Loving Life

2012-02-02T23:14:00.003-05:00

Presenting

hAPPy Heart Day~~Share the Love

Mary Clare Tarpley

Please join us in welcoming our first guest speaker, Mary Clare Tarpley, to the Feb. 11th monthly meeting. Mary Clare is a local educator for the Valdosta City Schools, majoring in reading education. Mary Clare will be sharing great websites and apps to help our children reach their fullest potential while using the latest technology available. She has a great presentation planned and some nice apps and accessories to give away. Please make plans to attend and invite other parents who will benefit from this presentation. We look forward to seeing you next week.

Meeting will be held at First Christian Church on Patterson St, Valdosta, Georgia.
Meeting time is 10 am - 12 noon.
Childcare provided.
For more information, please contact Erin or Donna @ info@southgeorgiadsa.org

Sometimes there are no words—just heartache

2011-11-10T22:05:00.001-05:00

I read my blogs and Facebook posts and the writers share their stories of themselves, their families and their thoughts about life in general. You start following their stories and suddenly you feel like you are part of their lives. And you are in a sense. Friendships for me have developed just through the written word. Sometimes I find their blogs because someone linked it in their post, sometimes I see them link it from Facebook or just word of mouth. I have been following and praying daily for two Facebook friends and their children who have been in crisis recently. I just read heartbreaking news about both of them back to back. And sometimes all you can do is cry and ask why.

This was the title of the blog post over at Shannon’s blog—The post in which my heart breaks. You can visit Shannon over at Little Wonders. To understand the reason for the post is to go back and read her story. She has been trying to adopt Ethan. He is medically fragile and needs this family. Today she found out he is being transferred to another hospital. She is losing the boy she has fought to adopt, the boy she has advocated for, her heart. I can’t understand these things. I again ask God why. Why does he go away from the family who loves him and wants him? What happens when he is transferred away? This little boy has spent so much of his life in the hospital and with this family who wanted him from the first moment they saw him—he is being taken away from them. I ask that you lift Shannon, Ethan and her family up in prayers during this difficult time. She has an amazing faith despite all the doubts, fears and heartache.

The other post I read tonight was Stephanie’s. Her daughter Iris had open heart surgery recently and has been battling some big complications in the past few weeks. Her post on Facebook was this: Iris had a very rough morning today~she went into a Pulmonary Hypertension Crisis~her heart stopped & they had 2 code her & perform compressions on her chest 2 bring her back~they are not sure why this is happened~trying to stabilize her & get her into the cath lab 2 find answers~PLEASE CONTINUE STRONG PRAYERS. They have recently started a blog. You can find them here: http://irisangels.blogspot.com/. Please keep them all of them in prayer and pray for Iris to stabilize.

This doesn’t even touch the surface of people needing prayers and support. Sometimes I find my heart just hurts from the heartache of other people’s grief, sadness, despair, and troubles in general. We are here to do God’s work, to share his love with others. If I feel this pain, what does he feel? I have been asking myself so many questions about suffering and why it is allowed. I have searched for answers and have gotten them, yet I don’t feel a peace over the answers. Maybe because my human needs are to be selfish and to ask God to stop all this suffering. That it feels so unnecessary. But I know that we are not to know all of God’s ways. I know his people rise time and time again, through despair, sadness, grief and troubled times. So I continue to look upward and to a promise that remains to this day. Trust in HIM and he will never fail you.

2 Corinthians 1:3-4 says--Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.

Philippians 4:6-7 says--- Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Psalms 119:50---My comfort in my suffering is this: Your promise preserves my life.

Gratitude and Blessings

2011-11-08T23:16:00.001-05:00

gratitude---the quality or feeling of being grateful or thankful; blessings---something promoting or contributing to happiness, well-being, or prosperity;the bestowal of a divine gift or favor

As we barrel forward into the month of November, our thoughts turn to Thanksgiving and the meaning of that day. It is said that people began having feasts as early as the 1600’s to give thanks. (Attributed back to 1621 in Plymouth.) A lady by the name of Sarah Hale promoted the idea of a national day set aside for giving thanks back in the 1800’s. She spent many years trying to persuade Presidents to observe this day. In 1863 Abraham Lincoln set aside the last Thursday in November as a national holiday. This would be observed by following Presidents until 1941 when Congress finally made it a permanent holiday to observe. Thanksgiving was observed to give thanks for the harvest of the year. Today Thanksgiving holds a lot of different meanings for different people nowadays, although we should be grateful for the farmers who bring in the harvest every year. Without them, we wouldn’t have any food on the table. It is the kickoff to the Christmas season, great shopping deals on black Friday, football, stuffing your face with an enormous amount of food, traveling, long weekends off from work, and time spent with extended family and friends. I count Thanksgiving as one of the greatest holidays we celebrate.

It is a time to reflect and to give thanks to God for all that I have. It is so easy to complain and think of the things you don’t have in life or the things others have that you are lacking. Are you lacking a bed to sleep in? A roof over your head? Peanut butter and jelly sandwiches to eat? What about a job? A car to drive around in? TV to watch? The computer to surf the Internet? A smart phone so that you don’t miss a single tweet? Take a vacation or mini vacation every year? Some of these things are things we take for granted. You come home to your house and you wish you had a bigger one or a newer one? Be thankful that you are safe from the elements in your home. Be thankful you know where you are going when you come home for the night. What about your car? Too many miles on it for you? Doesn’t have a navigation system in it? Well, be grateful you have a motor and four tires. A job that you can’t stand? 100 other people are waiting for you to quit it to take your place. In America, we have so many “things” that we just take for granted. These are really things to be extremely grateful for. I could be somewhere riding a donkey to get from point a to b—somewhere tonight a donkey is thanking God that I have a car! I could be homeless and hungry looking for a job. I am blessed and grateful.

What about the things such as parents who loved and nurtured you instead of belittling you and neglecting you? What about a spouse who adores you and loves to see you every evening instead of one who takes you for granted? How about the freedom to walk around outside your house without hiding your face because you are a woman and are not valued? What about when you walk outside at night and your silence mingled with the crickets and frogs? Some people are listening to bombs and living in fear. We live in this great nation of ours with so much freedom because of the men and women who continue to serve and uphold our freedoms. I am blessed and grateful.

Did you know that there are over 925 million people going hungry in the world? Our Earth just reached the distinction of having 7 Billion people inhabiting it currently. So almost 1 Billion of those people are starving. How can this be? 1 in 7 people are starving. They are in our towns, cities, and states, not to mention the untold millions around the world. Do you remember to be thankful when you eat a meal? Do you ever think how much food we waste and how so many people would be thankful to eat our leftovers—even out of the trash. I am blessed and grateful.

Do you have your children with you? Can you love on them and hug them? What about your parents? Your extended family? Your friends? So many people are hurting tonight. They are lonely. They are missing important people. They feel empty. Do you take the time to tell those you love the most how important they are to you? How much they mean to you? Have you reached out a hand to those struggling? Don’t avoid them—it only hurts you. Be grateful that God put you here to minister to those needing love and attention. You can never tell someone enough how much they mean to you. I am blessed and grateful.

There is so much to be thankful for in this life. Every day during the month of November I am posting on Facebook something I am thankful for. I thank God for the little things, the great big things and everything in between. Even when you think there is nothing to be thankful for, remember something or someone that made you happy or made your day, even if it happened 10 years ago! Be thankful for those memories. Try blessing someone if you don’t feel blessed. Your heart and soul will thank you. I am blessed and grateful. What about you?

Blessings by Laura Story

Felt weird not blogging last night

2011-11-03T00:02:00.001-04:00

It was weird not blogging last night, but so nice to get to bed at 10 too. I really want to thank everyone who did take the time to come and check me out at my blog this past month. I had 1250 views for the month, which I think is wonderful considering that in the past year since I started blogging, I had 1750 views for the entire year. I blogged 31 times in 2010 and 30 of those days were during this exact same challenge in October. I have posted a few times since last October, but I couldn’t stay consistent with it. I know 1250 is probably what some people get in a hour, but I am perfectly happy that I did have a few people reading. I don’t know what my future holds concerning me blogging on a regular basis, but I will give it another go. I guess if you write it...they will come? Corny I know, but who doesn't love Field of Dreams? And if you haven't seen the movie, then you definitely won't know what I mean about the write and they will come line.

So, my Halloween night didn't turn out quite how I expected. I rushed home to find that Blake's Toy Story army man costume shipped to us in an adult XL----perfect for Kiley, not so great for Blake. A last minute run to Wal-mart and Superman he was.

My child who argues every year about what his costume can and can’t be. This year he wanted to be something I had never heard of as a character—Smart A@#!! I am pretty sure he wanted to be that so when everyone asked him who he was, he could say those two words! Negative boy! When will you learn? His second choice was fine and I even like this one too. They grow up way too fast!

My sweet Katie has had a cough for a couple of weeks and it has only gotten worse in the past week. When she didn't get out of the bed Sat, I knew that she was feeling worse than it seemed with just the cough. Her temp was low grade, never got above 100, but she didn't want to eat either. Halloween night she started whining as soon as I put her costume on her and I knew that she wasn't going anywhere. I took the costume off after having it on her for 5 minutes. She went to bed and that was the extent of her night.

My bug not feeling well at all. Her costume was so cute that I will put her back in it just to take some pictures of her standing up in it.

We had a great time taking my cousin out trick or treating. I use to take my other cousins out, but they have all grown up and now we just have one or two to make the rounds with. So, a few of us walked around the neighborhood near my parents' home and we watched Abrianna enjoy herself getting her treats. After we had walked a couple of miles, we went back to my dads, got the truck and then went out for the last hour riding to houses that way. The houses are farther apart in my parents' neighborhood, so it was quicker to ride in the truck.

My cousin Abranna enjoying herself as Batgirl!

There is always controversial beliefs about this day and especially with the Christian believers. I grew up only to see Halloween as a night to get out and get candy from your neighbors. That was it. It was a dress up night with lots of candy involved and socializing with your friends. Nothing more. Of course it wasn’t until I was grown that the whole idea of evil and celebrating the devil and stuff such as this was told to me. We have alternative plans for this day in the Baptist religion such as fall festivals which I think are wonderful and I enjoy those too. I don’t want to hide behind a mask of pretending that I don’t allow my children to get dressed up and go trick or treating. I am certainly not celebrating the devil and I just want the innocence of what I had as a child to be passed on to my children. Of course this day and age finds much of their innocence stripped from them at such an early age. I will tell you that I saw more people out and about on this one night then a whole year combined. It was fun to speak to everyone and admire costumes and just remember that this was what being neighbors meant. It is a shame that I am so busy, that I am never out in my own neighborhood! Maybe we should start something called Meet and Treat once a month. It would be a way for all the neighbors to come around and get to know each other. I might be on to something here! Anyway, I enjoyed this as a child and if my children want to enjoy it, then I want to let them. They can make their own minds up about it when they are older.

Isn’t he cute?

So, I posted the other night about getting stuck in the ditch. That was a lot of fun! Not! Triple A showed up exactly to the hour when they said they would and at 11:15 we were trying to get my car out of the ditch. The guy trying to tow my truck out of the ditch couldn’t do it without my help. The car was that stuck. The left front tire has a huge slash where the culvert just ate it up. He didn’t think I should just put the spare on because he had a hard time getting the car out and he was worried that I tore something loose under the hood. He towed my car to the shop for me and everything checked out fine. I will get 2 new tires later this week and my car will be like new money next week! Very eventful night for sure. As I was snapping pictures on my phone, I told him I had to have these pictures to blog about. He thought that was cool. Wonder what he would have thought if I had asked him to step into the pictures?

The car hung up on the culvert with my tire slashed and flat and the car getting towed away.

I had to take Katie to the doctor yesterday as she was still acting like she did over the weekend, which was miserable. Strep throat was the diagnosis. First time she has had this. She is still pretty miserable. Her cough is so wet and poor thing doesn’t have any clue about coughing it up and out, but her lungs sounded clear and her ears are fine. Antibiotics for 10 days. No joy in that for her. We had to wrap her in a towel and hold her down to get her to take the medicine. I hate doing that to her, but I can’t take a chance on her not getting these antibiotics in, especially with her heart condition. My little munchkin took some cough medicine tonight (first time for this too) that the doctor prescribed since she was coughing non-stop and she will stay home for the 3rd day in a row tomorrow. The doctor said that strep was running rampant right now and we have already had several cases of the flu as early as the beginning of Sept this year. I am hoping that tomorrow little bug will start to feel better so that she can get back to school.

The 31 for 21 challenge was a lot easier for me this year than last year. I only started floundering towards the end and I can safely say that I only had one day that I would consider a cop out post with 3 sentences to it. Why did I feel so strongly about finishing this challenge? Well, for one it honored my daughter and those living with Down syndrome. It is a way for me to share with people who have no clue of what it is like living with special needs. It is a way for me to meet new people who are sharing my same experiences. It was to tell the world that my little girl is amazing because from the moment she took her first breath outside my womb, she was fighting for her chance to be here in this world. I feel we are here on this Earth for two reasons-one to share the love of Christ and to honor him and the other is to honor and love each other. Every moment is a gift. I see that everyday in the work I do and from the people I interact with. At any given time, I have friends whose children are medically fragile and yet they continue to amaze me with everything that they do with their lives and their children. If I could help one mom out there who is struggling with a decision on whether or not they should keep their child with Down syndrome, then I have done more than I could have ever imagined with these words from the past month. It really is more than just awareness of Down syndrome for me, it is awareness of life, of living in the moment and being grateful for all that you have, including a little extra 21st chromosome.

This has been going around Facebook and I love it, so I leave it with you all.

When you were but a tiny speck deep within my womb, something happened to your cells as life began to bloom. A 'chromosomal abnormality' is what the doctors say, but you are EXACTLY what I asked for each night as I would pray: "Dear Lord, send me a happy child who will not grow up too fast, (for I love the joys of childhood & I wanted that to last) send me a child who sleeps all night & doesn't often cry, a little girl with endless love & a willingness to try." That little extra chromosome, that number 21, gave me all I ever wanted, YOU, my precious one! Happy Down syndrome awareness month! I love you Kaitlyn (Katie bug) Brooke...... JUST THE WAY YOU ARE!

31 for 21: Last day!

2011-10-31T23:13:00.001-04:00

I didn't envision my last post of this challenge coming from my phone, but when you are stuck in a ditch with a flat tire, you make do with what you have. Waiting on the tow guy from triple a to get here when I should be hitting the bed. Oh well. That's life. What I loved about triple a was when I called them, the first thing they asked me was if I was safe. So thank you Lord--I am safe.

I had a simple post thought out for tonight-kind of like some closing remarks about this challenge, but I will save them for Wednesday. Might blog tomorrow, but highly unlikely since I am exhausted!

Bug is not feeling well at all. She was very fussy this afternoon when I got home. I tried to put her in her costume, but she was very unhappy. I didn't even get a picture of her standing in her outfit because she was miserable. I guess I tried because it was what I wanted, not what was in her best interest. Trying to make a moment happen that was not meant to be. I took her outfit off and that was the extent of her Halloween. She will feel better another day and we will try again for pictures. If not, we can just buy a new costume and try again next year. I just want my bug to feel better.

Blake wanted to dress up this year, but he wanted to be something inappropriate. I have always had this clash of the minds with him over costumes. I don't care for the scary type costumes--he always wants to be one of those. We have always settled for great outfits like Buzz Lightyear, Batman, and Tigger. His second choice was the army man from Toy Story. The outfit that came in the mail was an adult xl. So, we end up at Walmart today and he became Superman. We both liked the outfit, so I was happy that in the end he got to be something he liked and I got another "cute" costume out of him. Maybe we won't have a battle next year--yeah,as if it could be that easy!

I am hoping that the guy gets here soon and gets my car out of the ditch so I can go home! Happy Halloween! I guess I got a trick instead of a treat this year! Oh well, I could have gotten a bag of rocks. Such is life....

31 for 21: Day 30—Almost there, Q is for Quotes

2011-10-31T00:03:00.001-04:00

I love quotes, Bible verses, and almost anything that packs a punch with a few words. I find inspiration in many different places. Sometimes it is in someone’s signature line with their e-mail, sometimes it is a saying on a mug or picture, they are all over my Facebook wall, and they even have good one’s in my Dove chocolate candy wrappers. My favorite Dove one has to be the one at my desk at work: Chocolate therapy—oh so good! True words for sure! Good one Dove candy wrapper inspiration team! I know that had to come from a woman—I haven’t really seen many men go nuts for chocolate. I love quotes from famous people such as Abraham Lincoln, Mother Teresa, and Eleanor Roosevelt to name some of my favorites. I find inspiring words on Facebook pages such as Hopelights and An Angels Love. My love of quotes can be found just about anywhere. On logos, in magazines, favorite passages in books, in cards and gift shops. Chances are you usually see a quote when I am writing too. I just thought I would share with you some of the quotes around my house.

Can’t remember where this came from, but it is a magnet that hangs on my fridge.

Books such as these have a lot of inspiring words in them. Book on the left has great pictures to go with the great words.

These hangs in the kitchen.

This hangs in Kaitlyn’s room.

These are on Katie’s hutch. Please note that yes there is that much dust on her curio! Embarrassing, but this is real life here. Good thing Katie doesn’t sleep in her room—she would have some serious allergies!

This is a quote I painted on her wall after we came home from the NICU. I put the vinyl words up, taped off the the rectangle shape, painted inside the square and when the paint was dry, pulled off the vinyl words. Her wooden letters came from eBay. They were painted to match her bedding set.

Another plaque in Katie’s room.

I keep this in the kitchen where I drop all my junk when I come home. I like to look at it everyday to be reminded that life is a miracle and a gift.

I do have many more items such as these around the house, in my journals, and bookmarked on my computer. I guess I like to be uplifted by encouraging words and sayings. I love captions with pictures too. I recently found this one on Facebook and I had to share it.

And inspirational Bible verses such as this one.

I believe in these words. I believe in the power of words and the meaning behind the words. Just wanted to share some of what lifts me up. What inspires you?

Tomorrow completes the blogging challenge! I have almost made it! Whew! Katie is going to be a special little bug tomorrow. Will share tomorrow night what she dressed up as. Have to share these two pictures tonight. Love the Peanuts gang and Snoopy is the coolest dog of all time. Period. And this is a nice big tub of candy I will put on the front porch tomorrow night for the trick or treaters. I know, some of you are saying that someone will come by and dump the whole tub in their bag. So be it. I feel better having it out there whether we are here or not. Kiley bought a ton of candy today. You can’t really see how big the tub is, but it is a nice big stash! Happy Halloween and for those who don’t participate—Happy October 31st!

31 for 21: Day 29 Q is for Quiet

2011-10-29T22:32:00.001-04:00

Today has been a really nice quiet day for this old girl. Weekend plans had changed by the middle of this week for us as we had an opportunity to get some tickets for the big Florida/Georgia game today in Jacksonville. Thanks again Erin! 4 tickets were perfect for the family, but I really don’t think Katie is ready for 85,000 fanatics of football. So, I elected not to go along with Katie. Sent the boys off with my dad and my uncle to the big game today. Kiley even went out and bought him a Georgia Bulldogs shirt and when he put it on this morning, he said it pained him to wear it. He should have just worn his LSU or Kentucky gear. The fans would have taken pity on him (Kentucky) or been in awe (LSU). One thing I can say about that boy—he is a die hard fan, never wavers regardless of what his teams do and has been that way since the day I met him. Of course Blake is a die hard Gator fan. I don’t remember when he really started liking the Gators, but he wore his colors proudly today. For the record—Georgia won 24-20. Blake sent this message out earlier---“At the Georgia/Florida game, surrounded by red, and probably some drunks. Like seriously there’s this dude in no shirt, his body is painted red and he has some messed up shoulder pads on with a Viking helmet.” Gotta love your kids! So before they left this morning I snapped a few pictures.

Kiley wearing a Bulldog shirt—probably first and last time that is happening! Blake in his Gator shirt and Katie in her Kentucky cheerleading outfit.

Daddy, do I have to wear this outfit? You know this isn’t my team!

Katie and I just stayed home and relaxed. Katie is not feeling well actually and stayed in bed all day today. She has had a nasty cough and it just seems to keep hanging on. She wouldn’t eat until tonight, so I am hoping that this doesn’t get any worse. She has been eating and drinking fine until today, so I am thinking that she just needed a day for her body to rest. Praying that this doesn’t turn into anything worse!

31 for 21: Day 28 The Very Hungry Caterpillar

2011-10-28T23:31:00.001-04:00

Today was character day at Katie’s school. Katie’s class dressed up as part of The Very Hungry Caterpillar.

Ok, I took this image from Amazon.com if you couldn’t tell! Thanks Amazon! I love Amazon too.

I have to admit, I have never read this book. I knew it was a classic, but it had not been a book that I had ever picked up before to even glance at it. I was at the store the other day and I did read the book once I knew that was what we were going to do as a class project. Very cute book and I will have to get it for Katie as a Christmas gift. I will write in it and tell her a story about her class and this day on the inside cover.

So, I am not at all a crafty person. I love crafts, but they are always bought. The only thing that I have ever really gotten into is scrapbooking. Now I keep pinning all these pins over on Pinterest with the great hopes that I will do some of these crafts! It doesn’t matter if I don’t. I like looking at them all regardless. Now I have made a few food items from there and I can’t wait to try some more of the recipes I have gathered. Anyway, back to this story….

The paper came home with a list of possible suggestions on what Katie could be out of the book. A leaf, a strawberry, a watermelon, an ice cream cone, a cake, an apple and the cupcake which she was, along with a few other things I can’t remember. I told Kiley we had to do the ice cream cone or the cupcake. I googled images of homemade costumes thinking how am I going to come up with an outfit! Not this un-crafty girl. But….the debacle over my son many years back in kindergarten not dressing up for the Fairy Tale ball or something like that still lingers with this momma. I will have to you the story about this someday, along with a few others….like the time I forgot to pick up Blake on the last day of school that same year as the fairy tale ball and the school calls me. As soon as I hear my name on the overhead hospital paging system, I jumped up from my cafeteria chair and ran out of the hospital! I knew what I had done right at that moment. Needless to say, he was the last child there. How embarrassing! Oh well….stories of a failed momma another night. Back to this story…..

I went to work and told a few people what I was going to try to do this past weekend (make a costume) because I was looking for some suggestions on how to do the costume. Well, I am saved that night. My friend sends me a message that they have cupcake costumes on sale at Old Navy for the grand total of $12.50! I knew what I was going to do first thing in the morning! And VIOLA! The cupcake she was, courtesy of Old Navy. Now, I would have loved to have made some of the outfits I saw such as these, but I happily took the easy way out.

I got home this evening and I see that Katie’s teacher has posted a video. I copied all of these images from her video, so thank you Mrs. Amy. I can’t tell you how much I love her teachers and their para pros. I can tell they genuinely love our kids.

Katie looking so cute sitting with the scarecrow earlier in the week.

Watching with a little skepticism in her eyes as another child is getting his hands dirty.

Katie looks like she didn’t really like this. Her faces is saying yuck! Good sensory stimulation Katie—I love your hands in this!

Mrs. Marge is the apple, Mrs. Amy is the caterpillar, and Mrs. Cathy is the watermelon. Now they are crafty!

A picture of the class today. Please excuse the red blurs, but I do not want these children’s faces posted without their parents permission.

Going for a class walk. Not sure where to, but of course they needed to parade themselves around. They are too cute not to let everyone see their handiwork.

I just met this little boy on the left a few weeks ago. Very sweet. The one in the middle is wonderful with Katie. He loves her and I love when he says her name.

It looks like they played some great games too!

I would say my bug had a wonderful time these last few days! What a wonderful story that came to life today for The Very Hungry Caterpillar!

Note to self, why did you get the 2t-3t costume when you know she wears 4t and it was available for purchase!? Duh! The cupcake liner kept riding up on Katie---momma thinks you were adorable regardless.

Gearing up for a nice, relaxing weekend as we go into the final days of October. Other things were planned, but a great offer came up, so plans were changed and we are relaxing. I’ll share those details later.

31 for 21: Day 27—Fun after therapy today

2011-10-27T23:12:00.001-04:00

A diagnosis of Down syndrome usually means some form of therapy for our children at some point during their lives. For some it starts shortly after birth, some a half year into the journey and for some even later. Of course there are probably exceptions to this as there are with all things in life and they take therapy for a short time or never. For Katie, we were in contact with Early Intervention services as soon as we got home from our NICU stay. We didn’t actually start any therapy until she was 6 months old and then it was a monthly thing, then bimonthly, then weekly and now we are even doing triweekly services with speech. (just to clarify—2 days of speech are private and the other day is public with the school) She has never had an actual session with a physical therapist, but occupational therapy did the job of both. People ask me all the time how come we didn’t have a physical therapist. At the time we were getting evaluations, there was a waiting list to get a consult with the therapist and I didn’t push for the services like I should have. I didn’t even ask to be put on the PT list for a consult. My OT, Missy, did a great job with Katie. She would show me what to work on with Katie PT wise and she did just fine. Therapy won’t work if you don’t apply what they are teaching your child. You can’t expect your child to work an hour in therapy and that is it until the next week. You have to apply everything they are teaching BOTH of you. Learning never stops for any of us. So, as we continue to move forward with therapy, we are steadily working on old and new skills and I don’t feel that therapy services will be stopping for us anytime in the near future.

For the first three years of Katie’s life, the therapists came to our home. (It was lovely too!) Now we go to them. She loves therapy. Those first initial visits were rough. Katie has to grow into things I’ve noticed. She screams and cries like her whole world has gone to pieces (and for her it has) until she adapts after a few days or weeks in the new routine. Just like school was at the beginning of the year. Everyone at the therapy clinic can tell a big difference in how she was when she first started. We started with new therapists last year when she turned 3 and moved out of Early Intervention. My girl loves her therapists! I have been lucky in that Katie has loved them all past and present. Today they had a bounce house, hay rides, games and treats for the kiddos at the clinic.

Katie woke up at 1 am last night, stayed up for about 15 minutes, back to bed until 3 am. Then she proceeded to stay up the rest of the night. So, come therapy time today, she was exhausted. She still had a great time, but was ready to go after she had an allergic reaction to the bubbles solution. Here is some snapshots from today’s event.

We have to be appropriately dressed for these type of fall festivals!

Katie and her speech therapist Mandy. We love Mandy!

Fun things like the bounce house and the pumpkin ring toss!

Going for a hayride with Mandy.

Katie doing her favorite thing ever—bubbles!! This girl loves bubbles. Pop, pop, pop,pop, pop! That’s what Katie says.

Note that Katie is wet and that she has her hand (both at different times) in the soap dishes. She had soap all over her. You can’t see it, but her hair is slicked down with soap on her right side.

Love this game! Pin the “stache” on Mr. Frank, who also sees Katie as her OT. We love Mr. Frank too! Katie is like what the heck on the middle photo. Mr. Frank is hanging sideways. Kiley found it amusing and of course pinned it perfectly. Great game for those who are looking for a twist on pin the donkey!

Okay, so remember Katie got her hands in the bubbles several times. She ended up with bubbles in her right eye. You can’t see it here, but her eye is really red and she had a rash pop up on her right cheek. She was miserable by this time. It was time to go. She fell asleep about a minute after we got in the car, took a nap for a few hours (remember she had been up since 3 am), and when she woke up, the picture on the right tells how she was still feeling!

My sweetheart did ok after an hour or so once she fully woke back up. Her eye is no longer red and the rash is gone. She is ready for more fun tomorrow! It’s character day at school tomorrow. She will be a character from the book The Very Hungry Caterpillar, along with the rest of her classmates. Stay tuned…..

P is for Patience and Perspective 31 for 21: Day 26

2011-10-27T00:58:00.001-04:00

My mother has early stage dementia. To know my mother is to know one of the sweetest ladies possible. I don’t think you would find anyone who would say differently. This has been a fact my entire life. Our family is continually learning how to cope with this diagnosis. The reality of what we are facing hits me at different moments. Tonight I was again reminded of the road we are traveling. It scares me and saddens me to think that quite possibly my mother may not know me someday. Maybe a few years. Maybe more. Who knows? It has been about a year since we really started noticing that she was forgetting things. The constant asking of the same questions when the answer was already given 10 times. Not remembering how to cook a recipe from scratch. Not knowing the date. The small things started adding up to the conclusion that she was slowing forgetting all that she knows. All of your life you are being taught something. From the first second you were born. You never stop learning. But what do you do when your brain stops trying?

My mom pregnant with me in 1970.

I try to remember to be patient when the same questions are asked 5 minutes apart. I try to remember when she is short tempered and yelling that she is frustrated and it isn’t really me that she is angry with. I have depended on my mother my entire life. Still do. She has been amazing to me. She was the mom who at the last minute would take me to go see Nightmare on Elm Street at 14 because all of my friends were too scared to go. (Of course I was a big baby and I had to sleep with her that night and with the light on for weeks after!) She was the mom who would make her famous eggrolls for my friends just because she wanted to thank them for being so good to me. She was the mom who always took care of me when I was sick. She was the mom who would go on a trip with me just because I asked. She was the mom who would come to my house and plant flowers every year. On and on I could go. Neither Kiley or I have any siblings here. Katie and Blake’s other grandparents do not live here. Blake and Katie have been so lucky to have my parents here with us. They have taken such good care of them. It has never been a burden for her to watch the kids. Heck, they could live with her and she would be so happy. I remember when Katie was born. When we were out of town in the hospital with Katie and Kiley needed to get back to work, she stayed with me. She took care of me. She would sit some days at Katie’s bedside and silent tears would fall. She never said what she was thinking and I never asked. I just remembered trying to comfort her, to let her know that we would be ok. It was truly one of the first times that I remember feeling like I was taking care of her then by comforting her because it has always been her comforting me all my life. She has been Katie’s biggest supporter. Up until this school year, she has taken care of Katie full time for us while we work. My dad and I were talking this summer about how she will need to go to daycare after this year and I know this will sadden my mom (he is great too—he watches my mom watching Katie). I know Katie will be ok, but I don’t know about my mom. Since Katie is in school until lunch, she is with them for about 4-5 hours every afternoon. The doctor feels that Katie is helping to keep my mother focused, to give her some purpose in remembering and to help her live a stronger life. She is incredible with Katie and it will be so hard on her, but I know it is what is best for everyone.

My mom with Katie on her field trip earlier this month.

My mom possibly not remembering me will be terrible, but for her not to know my babies will be devastating. I am blessed that I have had her by my side for the last 40 years. (Thank you to my husband for loving me enough to stay when we were both so young and for allowing me to live here to be near her. He has given up so much too. I know how much it hurts for him not to be near his family.) I did not know my grandparents on my mother’s side. My mom is from Thailand and her mom died when she was 16 and her father passed when I was 6 or 7. My dad’s dad passed when I was almost 10 and my dad’s mom when I was 19. I have some wonderful memories of my grandparents on my dad’s side and I want those same memories for my kids. I want Kaitlyn to remember her grandmother. I want her grandmother to be here when she is 10, 15, 20. I know we aren’t guaranteed not one single moment, but if it were to be that we all lived another 20 years, how wonderful for us.
I have had 24 years more than my mom had with her mom. They have been good years. Wonderful years. I don’t take a day for granted. I am blessed. Thank you mom for being the best ever. I know I will never compare with you, but I hope that I have made you proud to have me as a daughter. I love you so much. Please remember her in your prayers.
Tonight made me remember my perspectives on life. How I want to live it—fully and honorable to God and to my friends and family. The road is not easy for any of us, but how we view our life in comparison with others is a big reality check for me despite some obstacles I am faced with. I am in a very good and blessed place. It reminds me that all it has ever taken to move forward is to put one foot in front of the other and to walk in faith. And when we have trouble walking down the path placed in front of us, that we can ask for help in being carried. I haven’t walked in anyone’s shoes but my own. Sharing Katie’s story is important to me. If sharing my perspective of parenting a child with special needs helps one person make a decision not to abort or not to give up on their child, it will have been worth the effort. I think of how people look at my daughter and how they instantly perceive how she is or how we live and how we can be so wrong with our perceptions without knowing the full story. My life is a series of events, all happening in God’s timing. I am profoundly aware of life being fragile and that we should be grateful to be a part of it. My perspectives became clearer again today on several things, one of which is how this blogging 31 for 21 challenge makes me feel. I have been thinking for the last few days that I just can’t do another night due to fatigue. Then I am reminded that maybe someone who has never given Down syndrome a second thought may be inspired by this month of awareness. It reminds me that we still have so much work to do on educating those who really have no idea about Down syndrome and the life our family member lives and the ones we live with them. So our work must continue and we push forward even on those days when weariness creeps in and decides to stay for an extended visit. My perspective is that life is a gift and one not to be wasted. Wouldn’t you agree?

P is for Possibilities 31 for 21: Day 25

2011-10-25T22:29:00.001-04:00

I am having a hard time tonight writing this post. I can’t find the words to say what I feel. P has been for passion, pessimism, prayers, pictures, patience and now possibilities. I guess I have so much I am thinking and feeling, but unable to articulate what it is I want to say. Is that how my Katie feels at times? You know she wants to say what she is thinking, but it doesn’t always come out when she wants it to. I look at her and in my eyes I am pleading, talk to me, say what you are thinking, only to be met with those beautiful soulful eyes and silence. This isn’t to be misunderstood with her actually talking. Her teachers tell me that she is quite talkative in class. She babbles and says words and she knows what is going on, but if I ask Katie a question, it is very rare that she will just answer me back. How was your day Katie? Silence. I love you. Silence. Sleep ok? Silence. Some days the silence overwhelms me. Other times it is just what it is. I wouldn’t trade my daughter for anything. She is full of possibility and I believe there will be a day when she is asking the questions instead of me. The Lord showed me how full of those possibilities she was those first few months of her life. When I think of those things she struggled with and things she still struggles with, it hurts me, but I know she doesn’t see it as a struggle. She knows no different at this age. She just keeps trying over and over. She is my inspiration through and through.
I think of how people write our children off because they hear the word Down syndrome and they automatically label her. They haven’t allowed her the possibility to shine, to show what she is capable of. I get so tired of people writing you off at first glance. I hate when people look and the instant label is put on them. To be fair, I have done it many times too, so please don’t think I am exempting myself from this statement. Their clothes are secondhand—oh they must be poor. Their house is a mess—oh they are slobs. They talk funny—they are uneducated. I use to think people were so rude when you would speak to them and they wouldn’t speak back. Now in my wisdom I know it is probably because they didn’t hear me or their minds were occupied on something else. My mother is so hard of hearing. I have to go around and tell everyone, if she doesn’t respond to you, she isn’t ignoring you, she can’t hear you, talk louder. Yet people who don’t know her have already labeled her in that one instance. How many times has someone looked at my Katie and then looked at her again and instantly made up their minds about her? Far too many I am sure, but I am going to try my hardest to stop labeling someone just from my first image of them. You know the old saying about first impressions…they count the most, blah, blah, blah….Well, I am going to go for second and third impressions too! Extend the same courtesy to my daughter too if you don’t mind. You’ll be a better person for it.
Think of what the world would be like if we allowed ourselves to be open to the possibility of always finding the good in others. To those who have accepted my daughter just as she is, thank you from the bottom of my heart. Thank you for seeing my daughter exactly as she is. Thank you for not judging and for allowing the possibility of her beautiful soul with her extra chromosome to shine through her into you.
Passionately believe in what you are doing, let nothing hold you up in your work, and one day at a time the impossible can become possible. I am passionately believing in the possibility that our children will be given all the same chances as everyone else. Change always starts with one person. There are moments in life that change you forever and my Katie’s birth is one of them for me. I leave you with a quote….
Never judge a book by its cover because the story inside could be the one that changes your life. You need to take time to look inside and give it a chance.

Mostly muted Monday 31 for 21: Day 24

2011-10-24T23:41:00.001-04:00

I continue to find myself here at the end of the day (for me anyway) trying to get a post together. Every.stinking.day. I see the Wordless Wednesday posts, the Silent Sundays, and the Talk less Tuesdays, so I figured why not try Monday. I wanted to label it Making it through Monday post, but I am really grateful to be here every day and I wanted to have a post where I didn't have to write too much. So mostly muted Monday it is. I am a terrible picture taker and I haven't even used my simple point and shoot in months. I just use my phone to take pictures nowadays. I haven't posted very much here period, but I really haven't posted enough pictures at all. I love photos. Never get tired of taking them or looking at them. So, to finish this day I am going to just post some random shots I have taken recently.
Her hair is so long! She really needs it cut, but I don’t know if she is going to sit still. I guess we won’t know until we try, but I am so scared!

Ok, so I go in the bedroom and Katie and Kiley are napping one afternoon. They are both knocked out cold. He’s snoring away with her foot firmly pressed against his head! Of course our kiddos are flexible, so the leg you see is at a 90 degree angle here!

Katie over at nana’s climbing on the table! This girl is into everything!

Katie and I were messing around in front of the camera, she loves looking at herself! If I looked as good as she did, I would like looking at myself all the time too!

Happy Monday! Now to go and get ready for Tuesday if I am blessed enough to see it!

O is for Orphans 31 for 21: Day 23

2011-10-23T23:11:00.000-04:00

This was my original O post. I have been working through the alphabet, but not worrying whether or not I make it to Z, as long as I get 31 post in 31 days in. (so far, so good!) I am so lucky to be in such wonderful company as the families who have and are adopting children. At any given time over the last 2 years, I have followed several stories with those who have decided to answer the call to bring home a family member through the means of adoption. My friend Christie, over at Welcome to Taylorville, has just gotten home about a week ago with her new son Jadon. Praise the Lord! And my Facebook friend Ashley, over at The New face of Downs, just brought her daughter home this weekend! Welcome home Juliana! I have some Facebook friends such as Suzanne, over at Our Chinese Butterfly and Faith, at An Angels Ransom to name a couple of ladies who are in the midst of adoption. There are more beautiful mommas and families to share and it is my hope that I will get to do that here as I continue to be more productive in writing on the blog.

Last night I woke up around 2 am (and I had just gone to bed after 12!), but I always say it is because God has placed something on my mind that I need to pray about. Well, I got on the Internet, maybe Facebook, I can't really remember how I found out the news, but the first thing I see is that Katerina's (or Katie bug as we will get to know her) adoption has gone through! Praise God! I have been praying for this family and their story as soon as I started reading it. Katie's mom had gone over to see her daughter in Europe and she was warned that it might be hard to see her. You see, her daughter is 9 years old and weighs 10 pounds! It is so hard to believe that. Yet she has survived all these years waiting for her family to come and get her and the true blessing of God will rain down on her in just a few short weeks as she makes her way home to be directly admitted to Children's Hospital in Philadelphia and to start her new journey with her family at her side. She has 10 loving brothers and sisters to come home to. What an honor it has been to read this story and see it come to this point. Please go and visit Susanna's blog at The Blessing of Verity. I promise you will be moved to tears of joy and heartache as you read this story. I can't wait to continue to read this story and to witness the Lord at work through this family and this child.

The heartache is because as Susanna shares, there are so many more children waiting for someone to rescue them. Some of these children have minimal interaction with any humans and this goes on for years and years. How do you survive that? How do we as human beings allow this to happen? The problem is, we hear of these stories and yet there are hundreds, thousands more that we will never of. I know people all over this world are starving, being abused and tortured, growing up homeless and parent less and just living a life that has to seem so unforgiving to them. It is happening all over the United States. People will tell me that we shouldn't worry about what goes on in other parts of the world when we have our own troubles here. I don't believe God would want us to differentiate between one child or another. They are all valuable and they all matter. My heart and my cause is to these orphans particularly because I could see how the circumstances would have been if my Katie was born there. How blessed am I am to live here in the States, to know that I have rights for her future and help for her future. It is so hard to imagine how people could work in a place and not love on these children. How they could not hear the children crying and not comfort them? Would it just be too overwhelming for them? Do they feel that there isn't enough of them to go around? I have read stories of some being very cold towards the children and it is so heartbreaking. The society there in Eastern Europe do not value these children. I have no doubt that there are parents who want to keep their children but probably feel there is no good option from them at this point due to circumstances they have no control over. Many of my friends who have adopted have said that they are asked why they would want to adopt a child with Ds. If we continue to bring these children home, maybe we are helping to spread the message that these children will do just fine at home given the chance and that they can thrive when loved!

I just know that my heart hurts when I think of how there is no one to soothe their tears at night. How quickly I run to my daughter when she starts crying to comfort her. No one to read them a bedtime story and to tuck them in with snuggles and kisses as Katie bug gets every night. No one to give them the time to just sit back and enjoy their meal like my Katie did tonight. No one to praise them and encourage them when they need it. I think of things like how my Katie loves to get a bath and how she loves for me to brush her teeth after and will sit and thoroughly enjoy having her hair blow dried. These children have no idea what a bathtub is. I have heard that some of them have never had their teeth brushed. And this is just touching the surface of what they don't know because they haven't been given the chance to live. How can that be? No matter how many times I think about it, I still cannot fathom how we as human beings can treat others this way.

I love this website, Reece's Rainbow. You can see and read about the children who are ready to come home to a family, perhaps you? If you are not considering adoption, please consider donating monetarily and sharing this site with your friends and family, pray for the families who are adopting, pray for the children who are waiting, waiting for a future that you can play a part in. I always say this, but it is so true, you are helping to forever change someones future. These children are like investing in an investment that yields high returns, only better, the return you receive in this investment can never have a price put on them. It is a life that deserves to be lived outside of a crib, outside of a mental institution and inside the loving arms of a family who have love, comfort, kindness, patience and hope to share with them. Please be a blessing to these children. They are waiting....

O is for Organizing--31 for 21:Day 22

2011-10-22T23:57:00.001-04:00

I was hoping to do my original O post tonight, but again, I am pressed for time as I have been busy today cleaning and organizing. While I was busy working at house cleaning, my son was enjoying the day in Tallahassee at the FSU football game with his football team. What is wrong with this picture?

I am going to have to download the pictures of the organizing project I started today. You literally could not walk in our spare room. The floor was completely covered in boxes of every sort. Boxes on top of boxes! My good intentions a few years back were to make a spare guest room again. Of course that didn't happen. My mom had given me her mattresses that she had when she upgraded beds a few years back and they have been sitting against the wall since she gave them to me! The problem is this is not the first time we have had to do major reorganization in this room. It is a catchall!

We simply have way too much clutter and I am a hoarder! I hate letting go of stuff. Need a pen? I have a couple hundred? Pictures? A few thousand. Cards? A huge box of them. I have letters back from when I was a child! Now to give myself some credit, I have done some major purging through the years. I did go through and throw away all my old receipts from 5 years ago and every statement I have kept from the phone company,the electric company, etc. I have saved magazines before for years and decided to just put them out at a yard sale for free to get them gone. Good ones that don't go out of style like cooking magazines. I have sold several hundred books (hardback) for a dollar apiece at yard sales and about 3 years ago did my last final purge of all the hardbacks that were my absolute favorites (400 books) and I donated them all to the local library. I simply don't have the room for all this stuff. Now my dream home would have this awesome library with a huge window reading nook, but that story is for a another post. Not to mention that I have gone digital with the Kindle for the last year and frankly, I don't miss holding a book for a wonderful reading experience. Ok, back to the clutter....

I have some ideas about what I want to do with the room (on a tight budget of course) and I will share the before and afters with you all. One thing I am going to do is leave the bed leaning up against the wall for now and only put it up if we have any overnight guests. I went to Sam's today and bought 2 of those 6 shelves storage rack thingys. Kiley put them together for me and I am going to use them to hold all sorts of bins and boxes. This gets everything off the floor and I can see everything I need. I think I will ask my mom to sew some panels to place over them to cover everything up until I can buy all the bins I want. I am already liking how it is looking as I have everything off the floor now and on the shelves. (that's what i have been doing all evening--tackling all the junk!) Now for the hardest part. My biggest project to tackle from this room is two huge boxes filled to the brim with all sorts of papers in them. Down syndrome stuff, medical bills, recipes, photos, journaling notes, old bills, brochures, work junk, school stuff from the kids, etc. You name it I have it!

So, I am calling it a night and I hope to get a few hours of free time tomorrow to catch up on some more blogs from the blog hop yesterday and to share my original O post.

N is for New Friends--Blog Hopping tonight for Ds awareness 31 for 21: Day 21

2011-10-21T22:53:00.001-04:00

So I am getting started a little late tonight on the blog hop, and this would be par for the course as I can't seem to get any post out at a reasonable time of the evening. My sweet friend Erin, over @ Crazy Beautiful Love, had a great idea at the beginning of the month to host a blog hop. We are IRL friends and her Eslea bug is the most beautiful girl ever! Those blue eyes are piercing and she always lets me hold her so willingly, and she always gives me the greatest smile when I whip out my camera and point it at her! (momma bug Erin has taught her well!) Anyway, Erin, this is a really neat idea to have others come and visit our blogs and spread the Down syndrome love! Thanks so much! There is still time to join in. If you get to this too late, you can still click on all the links to the right and visit those who did participate. I love reading about everyone's life and the things that make their lives so special. Happy Blog Hopping Everyone!!! Can't wait to meet you guys!

Edited to add @ midnight: I only made it through 10 blogs tonight. I will finish visiting everyone through the weekend. I love reading everyone's story!

M is for mixed emotions regarding the new blood test that detects Ds 31 for 21: Day 20

2011-10-20T21:57:00.001-04:00

The test that we have been hearing so much about for the last few years is here. Starting Monday in 20 major markets the test, which can detect Ds noninvasively, will be an option for mothers. The success rate of determining if the child will have Ds is almost 100%. It is done by collecting a blood sample which is less of a risk then what is currently offered. The only ways to get near accurate positive results is by amniocentesis or chorionic villus sampling. Both of these tests are invasive techniques which carry a slight risk of complications including a miscarriage. Women can be tested as early as 10 weeks, but most will be tested in the second trimester.
Will an entire race be eliminated? I think the answer to that would be no because you will always have parents who are fiercely opposed to abortion for different reasons. Will the number of babies with Down syndrome be lowered? It would seem that way. We have already seen an 11% drop of babies born with Ds from 1989 through 2006. Women who choose to terminate children who have a diagnosis of Down syndrome is over 90%. That number is numbing to me. I have to look at the amount of abortions overall and I don’t even think it is just a diagnosis of Down syndrome that has these numbers so high, it just that there are so many unwanted pregnancies period. Much less a pregnancy with special needs involved. I keep thinking of what would happen if we had a screening tool for Autism, Cerebral Palsy, or any number of diagnoses out there. Would the parents abort then? We have become a society that is all about me, me, me. We want the latest, greatest, biggest and best of everything. If we could genetically alter our children to have them just the way we want, would we not pick the best of everything for them to have? They would be the smartest (Mensa smart), most popular, best sense of humor, best looking, best personality, etc., etc., etc. You get the intent here. I think of how the Jewish people must of felt when Hitler was in power. 6 million Jewish lives lost because one person persuaded others that his idea of a perfect race was to be carried out. He also had million of others killed because they were people with disabilities, different religions such as Jehovah’s Witnesses, homosexuals, Polish civilians. Whatever he deemed beneath him, he had them eliminated. Are we eradicating a population of the world simply because people see our children as less than? What will the numbers show 10 years from now because of this test? Is my daughter part of the last generation of children living with Down syndrome? Again, I don’t think so, because I do feel that you will have a small population of parents who will raise their child no matter what is in store for them. Wouldn’t it be amazing if we would see a rise in the number of children born with Ds? A rise because we had parents saying I can instead of I can’t.
I couldn’t handle having a child with special needs, better you than me. I don’t know how you do it.
It takes special people to raise a child with disabilities.
Really? No, I don’t think so. Now are there parents who have no business with special needs children? Absolutely, but they probably have no business pro-creating anything, including plants! I think more than ever with the advent of so many ways of socializing via Facebook, Twitter, YouTube, etc, we can continue to share our message with everyone---having a Down syndrome child is some of the best parenting you can do. You become a better person through the experience. You will find that our children eat and poop the same way everyone else does. You will find that their smile lights up your world. You will have a voice you never knew possible. You will celebrate all of the small things in life.
The test is not going away. Doctors will order it. Parents want to know. Parents will react—it is human nature to have emotions. We need to be ready to advise if given the chance and to tell our stories. Will this test change the dynamics of how many children are born with Ds? Yes, I am sure of it. Let’s continue to advocate and share our perspectives of what it is like to give parents an option after they get a positive result if they choose to continue the pregnancy. What I will continue to do is hope that physicians will allow parents to be educated on the positives of Ds, instead of telling them so many negative things. That parents to be would find our stories and find hope. We can’t change what is happening right now, but we can continue to share our children with all of mankind. And as Martha Stewart would say----it’s a good thing!

My thoughts exactly!

2011-10-20T08:39:00.001-04:00

L is for Love, Love, Love…31 for 21: Day 19

2011-10-19T21:42:00.001-04:00

We covet it, abuse it, are blind to it, feel it in our souls, get hurt by it, overjoyed with it, can’t control it, judge it and are judged by it, misled by it, share it, keep it, hide it, are overcome by it, appreciate it and are defined by it.

There is no greater feeling in this world than to know love, share love and be loved. We are defined by what we love, what kinds of love we share or don’t share, what we feel or don’t feel.

Love is the great denominator of this world. Why are we here on this Earth if not to love one another as Jesus loves us? What purpose does life have if you have no love in it? I think that every person on this Earth has felt some type of love for something or someone at some point in their life. Is it that the love we share gets abused or discarded that we find ourselves filled with disgust, distrust and negativity? Where does it all go wrong? How do some people find joy and love in everything they do while others are eat up with misery? I think you can choose to fill your life with love. Share you heart with others. The love you share will come back to you a hundred times over.

I love the simple things such as Chick fil A lemonade and the smell of rain. I love the big things such as my friends and family. When I look back on my life, it has never been things that have defined my life, it has always been the people in my life and the events I shared with these people.

Speaking of love---I love the 21st chromosome! Now you knew I was going here---how could I not since we are blogging to raise awareness of Down syndrome. Of course my love for T21 (Down syndrome) has only grown through the years since Katie’s birth. I think what the extra chromosome is filled with is love, love, love! I never get tired of looking at my Katie bug. I never get tired of her presence. I feel so much joy when I see that she is overjoyed. Reading this blog you may think she is an only child, but that isn’t the case. I love my son in every possible way too. I find it easier to share my experiences about her since she can’t tell me she would be embarrassed or cringe if she finds herself the topic of every post as my son no doubt likes to tell me. Anyway, the love I feel for my friends in the Down syndrome community can’t be explained. We all share our love with each other over our kids—it is wonderful to be able to share every single moment and milestone with them because they never get tired of it and they love to share too. I have some amazing friends who are adoptive parents too. They already have a child with Ds and they add to their families by bringing more of these beautiful children home with them. Amazing!! That kind of love cannot be measured. Really, our community of Ds parents are the best group of people ever! We come from all different walks of life and we bond and have so much pride in our children.

Love is looking at my daughter and fully believing that she was made in the image of the Lord. I believe her life is just as valuable as any other person living here on this Earth. I believe she has a purpose. I look at her and she is the definition of love in every sense of the word to me.

Share the love you have inside yourself with someone who is hurting, who needs a shoulder to cry on, who needs eyes to help them focus, who needs ears to help them hear the words of hope, faith and love, who needs an encouraging word spoken to them. There are so many opportunities around us every day. Take the time to find them and be a blessing to someone. Your heart and soul will thank you.

L is for Later....31for21:Day 18

2011-10-18T22:24:00.001-04:00

I am simply too tired to write a post tonight. All these late nights have caught up with me and I need some sleep. It doesn't help that it is raining outside and there is nothing better than sleeping to the sound of the rain. Tomorrow I will catch up on my post about the L word...LOVE. Until then....

K is for Kind and Kindness 31 for 21: Day 17

2011-10-17T22:02:00.001-04:00

Wherever there is a human being, there is an opportunity for a kindness. ~Seneca

You cannot do a kindness too soon, for you never know how soon it will be too late. ~Ralph Waldo Emerson

Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. ~Leo Buscaglia

kind

adjective, -er, -est.

1.of a good or benevolent nature or disposition, as a person: a kind and loving person.

2.having, showing, or proceeding from benevolence: kind words.

3.indulgent, considerate, or helpful; humane (often followed by to ): to be kind to animals.

4.mild; gentle; clement: kind weather.

5.British Dialect . loving; affectionate.

When was the last time you showed some kindness to someone? Remember when Random Acts of Kindness was all the rage? It still is the “in” thing to do you know! Don’t you love that feeling that you get when you genuinely do something out of the goodness of your heart? You expect nothing in return. No acknowledgement of the deed, no hurrahs through the bullhorn, no ticker in Times Square announcing that you just made someone’s day. Don’t you love that feeling of euphoria that you are going to make someone's day? And really, kindness towards someone else can just be in the quick message of I am thinking of you today via text, the old fashioned card in the mail, a quick phone call, picking up a coke when you get one just because you want to share, and taking a moment to ask someone about how something in their life is going among other things. I certainly think I can improve in the area of carrying out simple acts of kindness to others. I think I am too quick to get into the details of my day to just remember that the goal of simply being happy with where I am and trying to be a better person can get away from me. How about you? Find someone to share something with—whether it is a scripture that made you think of them, a joke that you know they will love or just a quick I am thinking of you note. Your kindness meter will thank you!

Speaking of kindness---I don’t think I can say it enough, over these last 3 1/2 years, I have been bombarded with kindness since my bug has been born. Fact about Ds, our children are not all loving and kind every minute either. They have personalities and get mad and upset just like everyone else. They can throw tantrums too. Just a fact folks. Gotta keep it real. Although I can say with 100% accuracy, my sweet girl is the definition of joy. So, even today, 3 1/2 years later I still find so much kindness sent our way concerning my girl and even in them asking about Blake too. I have been lucky enough to meet some very big hearted people in my life. You know, the people who always remember the details you share with them and they always ask about you and those details every time they see you. Those are the people I aspire too. Several people come to mind. They are dealing with sickness and stress, yet it never fails that your details mean so much to them.

And on yet another note…not having anything to do with kindness, but I am outraged. I saw this video today of a 2 year old child being run over and left in the street to die. People walking right by and no one doing anything to lift a finger to help this girl who was bleeding massively in the streets. What has our world come to? Why all this dang suffering? Why are people so cold and unfeeling? Why have we stopped valuing life? What did this little girl do to deserve someone’s uncompassionate views and unfeeling heart? My heart goes out to this child and their family. They don’t think she will survive her injuries. I pray that God will touch this family with his healing hands. I just pray for the souls of so many lost people out here in this world. The good of this world has always prevailed over the bad, but sometimes my heart hurts so much for all the injustice out here that I am ready to just go home to be with Jesus. Of course I think of how many people do not value my daughter’s life and I am extremely saddened by this. I know that she is judged as less than by so many. People will look at her and never give her a second glance or thought. If they could just take the time to listen and believe me when I say that I am blessed in ways I never thought possible by having her in my life. Thank you Lord for you kindness in blessing my life, even when I don’t always see the good.

Kindness, like a boomerang, always returns. ~Author Unknown

J is for Journey: 31 for 21: Day 16

2011-10-16T23:31:00.001-04:00

Have you ended up where you thought you would be or somewhere you never dreamed possible? Maybe a little of both. I definitely can remember the dreams of my childhood, teen years and twenties. I even remember the dreams of where I was 5 years ago and where I wanted to be today. The journey isn’t all rainbows and unicorns. I can remember seeing a rainbow and firmly believing that if we could just get to the place it ended, there our pot of gold would sit, along with the Leprechaun from Lucky Charms of course. I didn’t dream of just things for myself though, I dreamed of making the world better. I thought I would go out and be a missionary and build a village. I dreamed that being a teacher would be my occupation until I had my 4 kids and stayed home, raising them the way I had seen June Cleaver raise her boys in Leave it to Beaver.

The fact is, my journey to where I am right at this moment in my life has happened not according to my plan, but according to the Lord’s plan. How many times have I asked him to do his will in my life and not beg him to let me do it my way? Trust me, I have begged more than I have asked. Have many times have you been lost on your way somewhere? And I am not just talking about being in a car screaming at your husband because he won’t stop and ask for directions either. I remember growing up and loving when we would travel. My dad had the books they gave you from AAA and it would have all these maps in it and they would highlight your route for you complete with detour information. I use to read those maps like I was the one driving. I couldn’t wait to follow the directions to get from point A to point B. But alas, human error would intervene even during the best laid highlighted routes. Think of where you are today, when did your life take a detour off the highlighted map that you had planned out?

Of course one such detour would be my daughter. I never planned on hitting the detour of unknown roads and pit stops of which I wondered if I would ever get back in the car. They didn’t tell me that my emotional tank would run on empty some days and that the car would stop and start with regular frequency. The windows were foggy at times but I would squirt some Rain X on them and the rain would just bounce off like a shiny penny on a United States boot camp made bed! My headlights burn brightly now as I know that the detour I took was one that brought me to a new place on the map—a place where it doesn’t matter what is highlighted, it’s a place to make new roads that Mapquest can detail for me later via my GPS. My journey is over only when the Lord decides to call me home. Until then, I look forward to the worn roads as well as the freshly paved ones.

I have shared this poem before and it is one that you either hate or love. I personally love it because it does describe a journey you want to take versus the one you end up having.

WELCOME TO HOLLAND

by
Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I is for Inclusion, Infantile Spasms, and IEP’s 31 for 21: Day 15

2011-10-15T22:24:00.001-04:00

I got an IEP progress report yesterday showing how Katie is doing in the goals we have set for her this year. She ranged anywhere from 0% mastery to 67% mastery. It is at once a sobering and yet a joyful reminder of how she has/hasn’t progressed. How can that be? When I look at everything she went through early on in her life and what she has had to catch up to, I am grateful for even the smallest progress. The fact is my daughter at 3 1/2 cannot do things that I took for granted with my son. Make no mistake about it---I do not dwell on what Katie can and cannot do, because I know Katie is trying the best that she can. It simply takes her longer to master a task than other children. Her normal is not anyone else’s normal. That is a fact plain and simple. Now this doesn’t mean that I don’t want her potty trained, feeding herself 100 % of the time, learning and saying her A, B,C’s, and colors among many other things. I do. I want her to reach the goals that we set for her at school and at home: school goals include paying attention to an activity for 10 minutes at the time, playing with toys with her peers during free time, and looking at a picture book and correctly picking out the requested item among some other goals. For the record she made a big, fat zero on the picking out items goal. Now I am going to ramp up what we do at home in that area and figure out what we can do to improve on that goal. I love watching her get into her toys and pull them out to play with the music toys and the balls. She didn’t do this for the first 3 years of her life. She showed no interest whatsoever in the toys in her toy box. So when I have to go around the living room picking up toys, I am grateful because she is showing progress of being curious, of taking interest in what is around her when she wasn’t before. Since we are potty training and I do feel like it is going good some days, I have to laugh when she takes her toilet and completely tears it apart. I take it that those are the days when she is not interested in the potty!

So what is an IEP? IEP stands for Individualized Education Programs. A good place to get the information in a broken down guide is at the US Dept of Education or at Wrightslaw. The IEP brings the parents, teachers, related service personnel (such as therapist) and school administration together to help improve the educational results for children with disabilities. Everyone gets together to look at the child’s needs and a plan is written out to assist in teaching and helping the child to learn. Goals are usually written for a year at the time and can address social, academic, behavioral and physical needs. You must have a way to measure the goals to see if the child has achieved the set goal. This article from Wrightslaw gives you extra tips on how to have a better IEP meeting. It was written by a lawyer who has an autistic daughter. This website has a printable toolkit to help assist you in writing IEP goals for children with Down syndrome. As you are starting to transition your child from an Early Intervention program into the school system, you will want to know about IEP’s as they will be a part of your life if you plan to educate your child in your local school system.

Speaking of school systems, I am so proud to report that Katie is doing wonderful in her full inclusion classroom at her private preschool that she attends 2 days a week. She is in the 2 1/2 year old class, making her a full year old than her peers, but developmentally it is the right fit for her. She has fit right in with the other children and she can model what her peers are doing. She enjoys going to school each day and I couldn’t be happier with the mixed schooling that we have her in right now. I was so worried about how she would do, would they find that she was too much trouble to have in the classroom since she had no attention span when she first started, would she be able to keep up with what her other classmates are doing, would the teachers feel that they were being burdened by having her in the class? I am so thankful that they were willing to try what they had not done before and that the entire school from the administrator on down would give my Katie a chance. I don’t know where our future will be concerning Inclusion, but I will approach that if we feel it is appropriate for Katie in the school system. I recently read an article my friend did for her teaching class about inclusion of children with Down syndrome. There really are so many benefits to it for the student and their peers. .

Inclusion is educating the student with disabilities with regular students for the majority of the day. Mainstreaming is when the student visits a regular classroom for specific subjects, usually non-academic. Inclusion shows that friendships develop and nondisabled students are more appreciative of the differences with students who have disabilities and they can find true acceptance of diversity which carries on into their home and community. I like the idea of inclusion in every part of my Katie’s life and as we go forward in the school system, we will assess her needs and determine what is best for her then. I am thankful that we have had a chance to see it action this year. Katie is like everyone else in that she wants to learn and wants to do what her peers are doing. Inclusion has been happening here at home for the last three years. Katie does everything we do-- we exclude her from nothing in our everyday lives. Today I went to the store and chased her around the store and got absolutely nothing done! Sometimes I need seclusion!

Just an fyi on how Katie is doing in the Infantile Spasm (West Syndrome) department. For those who don’t know, Infantile Spasms are a form of seizures. Katie started having them at 8 months of age and had them nonstop for 3 months. They can be neurologically devastating. We saw all of Katie’s development stop. Basically my daughter’s brainwaves were chaotic all of those months. Over half of all children with IS go on to develop other seizures. After treatment with high doses of steroids, Katie went into remission. She has been in remission since then. Even to this day when I think of what she went through, I am brought to tears because I lost my daughter during that time. I would try to research IS and would have to stop because I couldn’t see past all the negativity in the diagnosis. (Sort of how many people first think when they hear Ds as a diagnosis.) I felt so helpless during that time. Luckily for Katie, she is doing incredibly well now. Her doctor tells us that we are the only family he has treated that has continued to show a remission from these seizures. So for that I am extremely thankful.

That is why I said at the beginning of my post that Katie’s IEP is sobering yet joyful. Sobering because I am reminded that my daughter faced so many challenges starting out. Sobering because we continue to face challenges of a different source now. Joyful because for everything she went through, she has come out the other side intact and thriving. I don’t know Katie’s future, mine or anyone else’s for that matter. If I make it to the end of another day, I am happy that God allowed me to be here to see it. To see her. No doubt in my mind that Katie lives a joyful life—not to mention how much joy she brings to those in her life. When it is all said and done, will it really matter that my daughter learned things much later than others? Maybe, maybe not, but I can only be thankful for the joy she brings me right now and for the anticipated joy that she will continue to bring to me.

H is for Hope Haven and Healing 31 for 21: Day 14

2011-10-14T21:54:00.001-04:00

Hope Haven has a Down syndrome clinic that we go to in Jacksonville, Florida, 120 miles from us. I cannot sing the praises of this place enough. For new parents I would suggest you find a clinic, local or not that provides services especially for children with Ds. We had heard of Hope Haven from 2 of our friends, but we kept putting it off until the summer of 2010 (not because we were resistant, just being disorganized). When I finally made the call to get an appointment, they appointment was made for 8 months later. We were lucky because they had a cancellation in Nov and at the last minute we went down for our first full evaluation.

Talk about being impressed! We had a hour appointment with speech, physical and occupational therapy and education specialist. You also have the option of seeing the doctor who is a behavior specialist also. Since we already see a doctor in Atlanta at a different Down syndrome clinic, we opted out of the MD part of the visit. What I love about this clinic is the fact that they celebrate Down syndrome! They see all the positives in your child. The assess what your child is doing and has been doing and they give positive feedback on what you can work on to improve your child’s skills. They have a lot of knowledge about Ds and proven methods of what can work with our children. They are a supplement to what our therapist here are doing and they give me ideas of what I can do differently to enhance what therapies Katie does take. I love their enthusiasm for their jobs and it is so evident in how they interact with our kids, even though they only see them twice a year.

That would be my dream to see a clinic such as this here. To have all the resources in one building. To offer a preschool that promotes inclusion of our kids with their peers. If you are in this area or in Florida, I highly recommend this clinic. You can find more information at the link here--Hope Haven. If you haven’t connected with a clinic in your area, take the time to research one and visit it. I have come away from both of our visits so far highly impressed and armed with many ideas and new knowledge on how to best enrich all areas of my daughter’s life.

On another note, Katie had an appointment with her orthopedist yesterday. I had forgotten that she had an appointment since this was made 5 months ago. It was a follow up on her fractured femur from last Jan. Happy to report that her bone has completely healed exactly as it should have! We can cross that doctor off of her must see list! Thank you Lord! We are going to see an orthotics specialist to see if Katie needs some inserts though. In all likely hood she will. She bears a lot of weight on her inner part of her foot—it makes her ankles roll in. Does that make any sense? We have been watching this since she started walking, but it really looks like she needs a little extra help in that area. The physical therapist at Hope Haven recommended an evaluation when she saw her in August but said it could wait until we saw the doctor this month. So I guess we will get that appointment set up and see what they think.

H is for Hope 31 for 21 Day 13

2011-10-13T22:09:00.001-04:00

On Thursday I see a group of the same families (for the most part) at therapy. One couple brings their adopted son for services. As we have sat in the same waiting room for months on end, we naturally started talking about our children, the weather, and all the other details you feel like sharing. She has spoken openly about foster care and how her son came to be a part of their family. Today I really got the full scope of what she has done with the last 20 years of her life. She has seen 100 foster kids come through her home. Her daughter whom she adopted many years back was her foster child for 4 1/2 years before the courts decided to allow her to be adopted. She said it is very different now and that they don’t wait that long anymore. You can tell how much they love their son and how well taken care of he is. He has Cerebral Palsy and is non-verbal. You talk to this young man and his face lights up. He Is full of joy. One person, one simple act, one life changed. She has given hope to these children who didn’t ask for the circumstances for which they were left without parents. She opened her heart and her home 20 years ago and she has been blessed 100 times over. Amazing! I stand in awe of her.
As I have said before, I am proud to be a part of a network of moms who have a passion for their children. Within this group of moms is another group who have or are in the process of adopting children with Ds. How wonderful is that? I have talked about Reece's Rainbow in the past and it is a wonderful ministry helping to get children out of the orphanage’s , especially in Eastern Europe. We are lucky to have a waiting list here in the United States for children with Ds looking to be adopted. I don’t mean that we are lucky to have any of these children without a home, but I am so happy to know that children born here with Ds can be adopted so quickly due to many people waiting to get them. I wish we didn’t have any waiting list or orphanages period. What wonderful hope we give to these children when we take them from a life of living just to be existing and we take them out of these places and they blossom. I love the slogan Reece’s Rainbow has adopted: Every child with Down syndrome deserves life, love and a family of their own. It really is that black and white. That about sums it up plain and simple.

As the lady said today at therapy—“I believe that God placed these children with me all these years because I am to help nourish them, to help them blossom. They start out as seeds and I am the water and food. They leave me loved and taken care of and their roots have grown and become stronger.” Can you imagine how much the children who are taken out of the system forever feel? I follow these stories of the families and I see the before and after pictures and really, there are no words. Not all of us are called to adopt, but I do believe that we can all play a role in changing the life of one, ten, a hundred, and so forth just by being prayer warriors, donating funds, and speaking out to others about adoption and possibly sowing seeds within them.
One of the most inspirational people that I follow blog wise is Adeye Salem over at No Greater Joy Mom. Her family has added the blessing of 4 children via adoption. She writes so passionately and with such conviction from the Lord that you can’t help but be inspired by her. She recently posted links to 32 different families in the midst of adoptions. She is challenging us to make a difference by reading their blogs and donating to their accounts, ten dollars if you have it. If you don’t have any extra money, pray, send good thoughts, send an encouraging word to these families. All of these things makes a difference. This is the link to the blogs---here. Stay home instead of catching a movie, skip the venti latte, wait to pick up your favorite magazines next week, just one small change today adds up to one big change for someone’s future tomorrow.
We can be part of the hope that these children need. Hope to believe that a parent is waiting for them instead of just lying in a crib waiting for a touch from anyone; hope to believe that they will be read bedtime stories instead of lying alone in their cribs waiting to fall asleep; hope to believe that someone wakes them in the morning with a kiss and an I love you instead of lying there in their cribs covered in filth; hope to believe that they will sit around the dinner table and share stories with their brothers and sisters instead of being fed assembly style as quick as the food can be shoveled in; hope to believe that they will one day be accepted just as they are and that orphanages can be shuttered forever. When you look at the big picture it can be overwhelming, depressing, and seem impossible that you can make a difference, but you can. All it has ever taken is for one person to help be the change. Could that person be you? I am 100% certain it is.

G is for Goodbye---We will miss you Emily, Todge and Renee! 31 for 21 Day 12

2011-10-12T21:54:00.001-04:00

Tonight I said goodbye to the Smith’s. Emily, Todge and baby Renee are moving to Nebraska, courtesy of the United States Air Force. The Air Force has two very fine members in the Smiths and we know that duty calls. I don’t know that our paths would have crossed had it not been for our sweet girls sharing a common bond, but I am oh so glad it did!

Emily—what a doll baby! Oh so pretty!

Renee was born a little over a year ago and we first met at a play date that our fellow friend Polly set up so that we could meet Emily and Renee and offer them our support and friendship. (Todge was on TDY—Temporary Duty, which in civilian speak means that he was gone away on an Air Force assignment, which can last anywhere from a week or 6 months.) To be part of the military is to be in something as special as this support group I am in with my fellow moms and dads. Growing up in the military I remember (and still to this day have childhood friendships that I keep up with) the pain of leaving a set of friends only to find joy in the next set I would meet. Make no mistake about it, our military families make enormous sacrifices to protect our freedom and for that I am extremely grateful.

The Smith’s

Emily is one of our founding moms in helping to get our support group off of the ground. Anything we have asked of her, she has done it willingly and with enthusiasm. She has become a fierce advocate for her daughter and has been the liaison between the Air Force and our community as we have pushed forward to get the group growing. I am so sad to see her go, but I know that this isn’t really goodbye…its so long for now. We won’t get to watch her daughter Renee grow in person, but we will via the internet. As I told her tonight, we are only one Facebook status away from each other!

Emily, Todge and Renee, goodbye and good luck. I wish you all the best in your new home. Your old home will miss you, but we won’t forget you. Thank you again for everything. I look forward to seeing you blossom in your new support group, but will always cherish the fact that we had you first. Renee is blessed to have you two as her parents as you are to have her in your lives. She couldn’t ask for better advocates and parents. Your journey began with us, but your story is still left to be told and one day 20 years from now we will look back and say, Remember when…….

F is for Faith ---31 for 21 Day 11

2011-10-12T00:05:00.001-04:00

Sometimes there are no words. Yup, even from me. Sometimes I have to sit silently in the shadows and listen, feel and believe. Believe even when this world says there is nothing to believe in. Believe when it would be so easy to turn away. Believe when your faith feels small. Believe because this is the reason I am here, living each moment I have been given, because someone chose to end their life to give me mine.

Casting Crowns—Praise You in this Storm
I was sure by now,God, that You would have reached down
and wiped our tears away,
stepped in and saved the day.
But once again, I say amen
and it's still raining
as the thunder rolls
I barely hear You whisper through the rain,
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away.
Chorus:
And I'll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I've cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm
I remember when I stumbled in the wind
You heard my cry to You
and raised me up again
my strength is almost gone how can I carry on
if I can't find You
and as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away
Chorus
I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth
I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth
Chorus

Jeremy Camp—There Will be A Day

I try to hold on to this world with everything I have
But I feel the weight of what it brings, and the hurt that tries to grab
The many trials that seem to never end, His word declares this truth
That we will enter in this rest with wonders anew
But I hold on to this hope and the promise that He brings
That there will be a place with no more suffering
Chorus
There will be a day with no more tears, no more pain, and no more fears
There will be a day when the burdens of this place, will be no more, we’ll see Jesus face to face
But until that day, we’ll hold on to you always
I know the journey seems so long
You feel you’re walking on your own
But there has never been a step
Where you’ve walked out all alone
Chorus
There will be a day with no more tears, no more pain, and no more fears
There will be a day when the burdens of this place, will be no more, we’ll see Jesus face to face
But until that day, we’ll hold on to you always
Troubled soul don’t lose your heart
Cause joy and peace he brings
And the beauty that’s in store
Outweighs the hurt of life’s sting
I cant wait until that day where the very one I’ve lived for always will wipe away
the sorrow that I’ve faced
To touch the scars that rescued me from a life
of shame and misery this is why this is why I sing

E is for Events (part 2)-Field Trip 31 for 21 Day 10

2011-10-10T19:59:00.001-04:00

Katie got to go on her first school field trip ever this past Friday. I took the morning off from work to be able to go with her and asked her grandma to come also. This was the first time that she rode on the bus too. We went to the 30th annual Honey Bee Festival in a small town near Valdosta. Isn’t it funny how you can live somewhere for many years and never attend such a popular event? Well, that’s me. I love arts and crafts and parades, so I am not sure why I haven’t been before this field trip. I will have to plan on going to next years for sure. I didn’t have near enough time to do all the looking and shopping I wanted to do. I did get some cute little outfits for the Katie bug. I will have to share those when she wears them. Alas, we were a little pressed for time (or maybe it was just me as I wanted to stop at every booth), so I didn’t find the jelly and jams I was looking for. And was anyone selling honey? Seems like it couldn’t be a honeybee festival without someone sharing all things honey, but what do I know. I’ll let you all know next year. Oh yeah, check out her outfit…it was spirit day at school, but we don’t have any school outfits yet (we are working on that), but I had the perfect outfit for her. Take a look at her shirt, could it bee a coincidence?

Okay, bad pun, couldn’t help myself. Anyway….
Back to the field trip. Katie and 5 of her classmates went on the field trip. (Two have Down syndrome too!) Along with taking the kids to the Honeybee festival, we went to Katie’s teachers home and went on a hayride (which had a pumpkin scavenger hunt for the kids along the route) and we had a picnic on her front lawn. It was a truly wonderful morning! I can tell how much her teacher and her parapros love these kids. They are so good with them. The kids got to see the fire truck, walk among the food and craft booths, hop on an old caboose, touch real cotton coming out of the cotton field, hold pumpkins, sit on an John Deere tractor, and enjoy a picnic lunch. What more could you ask for? Thank you Mrs. Amy, Mrs. Cathy and Mrs. Marge for a wonderful time! I won’t ever forget it!

(I would have loved to show the other children, but I didn’t ask permission to share their photos, so I will share Katie’s friend Juicy with you. He is so sweet, he takes good care of her and I love to hear him call her name.)

L to R-checking out the train, everyone walking the streets, Juicy giving me the look like I need to stop taking his picture

Lto R-don’t you love festivals and fairs, the funnel cakes and lemonade always hit the spot for me, walking around to some more booths, Katie leaning on Juicy

L to R- checking the train out, walking with grandma, this was the only bee I could find

L to R- on the hay ride, Mrs. Amy with Juicy on the hay ride, one of the pumpkins hidden along the hay ride trip

L to R-enjoying the picnic, our tractor we rode, getting down with the grub

Katie checking out the tractor and the pumpkin.

More pictures of Katie and Juicy checking things out.

My thoughts and prayers are with the George family 31 for 21 day 9

2011-10-09T18:54:00.001-04:00

I had a different post ready to go for today, but it is not meant to be for today. Today it is overcast here. No clouds peeking through the gray that surrounds us. Light rain coming down from time to time. My heart feels heavy, overcast and gray with tears today, just like the sky outside my window.

Fear crackles like fire in every life, fed by the uncertainties that are a constant part of people and events. Small wonder that we dream universally of desert island, of quiet safe places where we might catch our breath for a moment. But there are no such islands, not for any of us. There is only life, unfolding quite mysteriously and with ever-present challenge even in the most commonplace existences.

Eugene Kennedy-The Pain of being Human

This morning I was made aware of some devastating news – a tragedy that had already befallen this same family 18 months ago. My friend Joany George has suffered the pain no parent wants to endure. Last night her son Brad perished in a home fire that destroyed her home. I cannot begin to imagine how she is feeling, but my heart hurts so badly for her. It was only a mere 18 months ago that she lost her daughter Carly to a sudden cardiac event. Her daughter was only 8 years old and in her short life she was challenged several times over. She was born with Down syndrome, had heart surgery and battled leukemia. I met Joany over the internet via carepages.com. She was one of the very first people I talked with who also had a child with Down syndrome. She gave me encouragement and she followed Katie’s story as I caught up with hers and began following her story. For Joany and her family to lose Carly after all that Carly had been through left me to question God as to why such heartbreaking things have to happen in the world we live in. To say the last 18 months have been difficult for Joany is an understatement. Joany has shared with us her struggles in living in a world that doesn’t have Carly physically present and her joys in the life Carly shared with her and all the memories she has carried with her of her daughter.

I cannot understand why another tragedy had to befall this family. Their other daughter, Ashleigh, just left for the Navy after completing college, so Joany was dealing with her daughter being gone too. Now this. I ask God why. I have never been afraid to ask him this. It is a simple question with a thousand possible answers and sometimes no answers. I learn something everyday that he has taught me. In times such as these I am left to wonder….wonder what good comes out of something so profoundly life changing and traumatic.

Which lead me to this-----My family of Ds moms and dads, our community of incredible people---- I feel so blessed to be a part of this group of parents. I have never met Joany personally. All of our words have been via the written or typed word. You hear it all the time---be cautious of what you do on the internet and who you talk to. Our community is built on the trust of the good in mankind. We need each other. Without these parents, relatives, friends and fellow advocates---I don’t know where I would be today. Our bond is stronger than the link of the extra cell that brought us together. I have gotten to know these people and their families and they all bring a different and welcomed perspective of Ds to our friendships. I have made hundreds of new friends, and have even met some of them in person.

It is the link of a network of people finding the beauty in a life most people choose to discard and ignore. It is the words of support, the laughter, the tears, the triumphs and the disappointments of what we share that brings our community of Ds parents together. My support network is amazing! The caring acts of a few moms such as Joany when I was first starting out has led me to be involved with a support network of priceless proportions. God gave me the gift of my child and through her, the gift of friendships I hold dearly to my heart. Through these ladies I am able to share with new families. I am able to bring support to these new moms and dads as Joany once did to me. So thank you to those special friends who have graced my life these last 3 1/2 years. I love you all!

It is not easy to find hope when you are facing pain and difficulties, but the one great hope for man is where he has always been---waiting patiently for us to give it all to HIM. So Lord, I give you all my pain of this tragedy. I give you all my hope that this family will continue to push forward in the face of despair and that they will find peace somewhere in this grief. I give you all my thoughts that I may never be able to comprehend or understand this tragedy or others like it. I give you all my sins of being human and being angry at you. I know that being human is to know pain, but I am fatigued in that department, so I give you my fatigue to put to rest. I give you my tears to use in nourishing the Georges to allow them to blossom again under your love and grace. I am not worthy but I am thankful. I am so thankful to have a love from you that compares to no other.

Please join me in sending prayers, thoughts and love to Joany, Paul and Ashleigh George in their time of need now and in the days and months to come. Lift them up and carry them forward through this difficult time. You can go visit Joany over at her blog--http://abandcsmom.blogspot.com/.

John 16:33 - "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

Lamentations 3:31-33 - For men are not cast off by the Lord forever. Though he brings grief, he will show compassion, so great is his unfailing love. For he does not willingly bring affliction or grief to the children of men.

E is for Events (part 1)-Buddy Walk 31 for 21 day 8

2011-10-08T21:28:00.000-04:00

Today we went to Tallahassee, Florida with some of the members of our Ds group to take part in a Buddy Walk. The Buddy Walk is an event held annually around the country and the world. Usually this is held here in the US in the month of October as we celebrate Down syndrome Awareness month. The goal of the Buddy Walk is to promote acceptance and inclusion and to bring awareness to everyone about Ds. The first Buddy Walk was held in 1995. In the past 16 years the walk has gone from 16 annually to close to 300 this year. Money raised at these walks go to benefit local and national programs.

The premier Buddy Walk event is held in New York City each year. Pictures are submitted of individuals living with Ds to get the chance to be on the New York Times Square Jumbotron prior to the race. I have had several of my friends walk with them and several people have had their picture shown. I am hoping that south Georgia (and yes I would love for Katie to make it) will be represented soon in the near future! To learn more information about Buddy Walks, including how to find one close to you or even start your own, visit the national Buddy Walk site here.

This Buddy Walk makes the fourth one that we have participated in. I hate that we didn’t get to walk with our friends the Zuidema’s this year as their Buddy Walk was today too. I thought of you all though! One of our goals for our group is to host our own here in south Georgia for those who do not want to travel the minimum of 1 1/2 hours to attend a Buddy Walk event which are held all around us here in Georgia and Florida. I fully believe our community will step up and join us as we push forward to making this dream become a reality for our Ds families.

Today was the perfect day to have a walk! Cloudy at times, sunny at times, nice breeze blowing, temps in the 80’s. What more could you ask for? Beats the weather we experienced at this event last year for sure. Our team had 7 of our children from the group represented. Several of our families and friends also made the extra effort of traveling to walk with us. I love that we got to pick the colors of our shirts from a variety of colors and that we got to have our name put on the sleeve of the shirt too. Although Katie’s shirt (and all the other kiddos with us) is several sizes too large, I was still able to keep her looking fashionable with a little tucking. This shirt officially becomes a part of her nightgown stash for the next two years as it reaches to her knees now! Thanks again Amy for getting our team set up and picking the colors of the shirt. Great choice! Everyone loves the color.

Again, thank each and every one of you for taking the time out of your busy schedules to walk today. We love all of our buddies!!

D is for delighted! As in delighted that I wrote this post a few days ago! 31 for 21 day 7

2011-10-07T21:13:00.002-04:00

Hi everyone! I am doing a small guest post over at my friends' blog tonight. Erin Gaskins is a friend of mine locally who writes over at her blog Crazy Beautiful Love. She is an excellent writer and I suggest you go and check her writing out. Her daughter Eslea also sports the extra 21st chromosome along with Katie. She just turned a year old and I have had the pleasure of getting to know Erin, Eslea, her husband Jason and their other daughter, Emma over the past 9 months or so. Erin is also a fellow co-founding member of the Down syndrome Association of South Georgia. Her enthusiasm for life is contagious and she is one proud momma of her two girls! I am blessed to call her my friend and to be able to share our common t21 bond with her. Thank you Erin for giving me some space on your blog. I feel honored to be there. So go on over, check out my guest post @ Crazy Beautiful Love.

C is for Challenges in Communication (verbally—our nonverbal works just fine) 31 for 21 day 6

2011-10-06T22:36:00.001-04:00

One of the big challenges you see with children and adults with Down syndrome is speech. In the last three years we have managed to find new means of communicating without the use of the verbal word on Katie’s part. Receptive (understanding what is being said) language skills are a strength for our children. It is the expressive (speaking and composing sentences) language skills that we work on repeatedly with our children. The difficulties come in the timing of the speech, coordination of muscles used for speech and the timing of the speech. It takes coordination of your breathing, voice and how you produce speech sounds. Some other factors that can hinder how they speak have to do with sensory processing and oral tactile issues. Non-verbally we have been exposed to new ideas with deep roots, such as sign language.
I cannot tell you how much Katie loves signing. It was recommended to me early on that signs had helped other children with Ds greatly, and upon further questioning, found many of the parents I talked with using Signing Times. I cannot recommend this series of videos, books and flash cards enough. You can get the app for the iPad and iPhone also. Great stuff! My daughter (and I) have learned so many signs. She will do signs that I have no clue of what she is doing. She understands signs that I do and will name them for me. She won’t do but a few signs for us when I ask her to, but I hope that in time she will use more than the basic signs to communicate with us. Anyway, Signing Times is another post for another day. To supplement that, you can find websites with thousands of other signs too. One site is http://handspeak.com. They have about 5,000 signs and a short 2-3 second video to show how to do each sign. Pretty neat stuff. Now where was I?
Our children usually do show strength in nonverbal communication with such things as picture exchange systems, signs and gestures. Speech therapy is usually targeted for them in infancy and into their childhood. Learning to talk is a big part of their development, especially socially and emotionally. It is important for all of our children to have their hearing tested regularly as this can also impact their speech in a huge way. We have laminated pictures of Katie’s favorite things so that she can pick a choice between a few cards. Stuff such as her drinking cup, cookies, chips, toys, and pictures of the family. We also have flash cards in many different themes. A, B, C’s, animals, shapes, colors, first words, on and on the list goes. We like to show her the flash cards and she can tell us what the picture is. We are just now exploring the use of the iPad for communicative programs. I heard so many wonderful things about the iPad that I knew it was a must have for us and I am exploring different apps now for Katie bug. I am going to recommend you get one if you don’t have one for your child. The iPad has the most apps for special needs of all the devices out there. Check out this website---Apps for Children with Special Needs. This site is excellent for learning about all the apps geared to our kids. You can find them by clicking here.
Right now we are doing speech therapy 3 times a week. Twice in private therapy and once in school. (She is in school 3 days a week at the public school.) My child’s verbalization of words has exploded since we started school this year. She is very chatty at both of her schools and during therapy. I hear her watching her videos and trying to sing the songs and I am just so proud. She has said words like Doritos and has strung some words together like—go, bye bye, school all at the same time or go, walk, bye bye. I think I am guilty too along with other family members of just anticipating her needs also. We are trying so hard to try to “force” her to say what she wants. For example—she hears me at the ice machine putting ice in my cup, she coming trotting into the kitchen and she is looking at me. I know she wants a drink. I try to get her to say drink to me. She will usually just keep looking at me or she will grunt. Sometimes she will say the word or sign it without prompting, but usually I have to ask her if she wants a drink and she may or may not say drink or sign drink after I do it.
Something I want to hear more than anything else from her mouth---I love you. I can’t wait to hear her speak those words to me verbally. She will sign it now and it makes me so incredibly happy when she does it. As with everything else…I take what I can get and work on all the rest. It will all come in Katie’s time.
For new parents, this is a nice, quick overview of speech from the National Down syndrome Society.
National Down syndrome Society article related to speech
Down syndrome education online also has a great overview article about speech. You can find that here.
National Down syndrome Congress also has some great articles on their website. You can find those articles here.

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B is for Birth Story and Beginnings 31 for 21 day 5

2011-10-06T00:00:00.001-04:00

Every story starts somewhere…..
The clarity in which I remember the day after we heard the words Katie and Down syndrome in the same sentence still remain in clear focus for me. It is as with everything in life…some people remember every detail, some people say they were in a fog after the words were spoken.
I had been on bed rest for about 2 plus weeks prior to having her. Went to work and showed a co-worker how swollen my feet were. Next thing I know my boss is demanding me to lie down and get vital signs. Blood pressure elevated too and I am sent home to call the doctor. I go in to see the doctor and am admitted to the hospital. After a few days I go home with strict instructions to stay in the bed the rest of my pregnancy. I am back in the hospital 3 days later for another week. I go home and less than 36 hours later I had Katie. I remember not sleeping the night before her birth, staying up and writing thank you cards out for gifts I had received and whatnot. That morning my water broke and a hour after I get to the hospital, I have Katie. The birth is pretty much uneventful. I screamed pretty loud during labor (scared Blake to death, no epidural, just a shot of pain medicine) and I had to have some oxygen right at the end. Probably needed the oxygen because I was screaming so much and too loud! Anyway, Katie is not as responsive as she should be. Apgar score a 4, had to give her Narcan (helps to reverse the effect of Demerol—the pain medicine I had gotten) because they felt she was sedated from that. Apgar score comes up to a 9. No mention that anything else was a concern. We go to our room and spend a very quiet night with Katie. I didn’t sleep at all either night after I had Katie or Blake. I guess it was the wonderful miracle of birth that kept me on a natural high. I remember telling Kiley that I wanted an echo (ultrasound of the heart) done on Katie because we had seen a cardiologist while I was pregnant, just because of Blake’s heart history. We had not named Katie yet when I was told that we couldn’t get the echo done until she had a name. So, in a split second, I just went with what I wanted to name her and signed the papers. I remember Kiley telling me that he had went around to the nursery when they had brought Katie back there that evening and he saw written on a piece of paper by her name the words heart murmur. I told Kiley that night that Katie probably had some kind of heart problem. I just sensed it. When she wouldn’t feed that night—she wouldn’t suck on the bottle---it just made me feel that something was wrong. I attributed it to her heart as the reason she wasn’t feeding. Looking at Katie, I never once thought the words Down syndrome. Looking at her now, I can see some of the features they mentioned, but back then I didn’t see anything.

The photo they take while you are in the hospital.

The words Down syndrome had been brought up to me back at my 18 week check up. My AFP was low and I was told that Ds could be a possibility. I remember the words abortion being mentioned and that if something was wrong, we should pursue finding out now in case we wanted to terminate. My doctor was wonderful. Let me tell you that there was so much more to this conversation because he knew that wasn’t what I wanted, but legally he had to let me know my rights. I saw a specialist, had several level 2 ultrasounds which all looked normal and was told that everything was probably fine. I never gave the words Down syndrome anymore thought after seeing the specialist. We elected not to do amnio because it wouldn’t have changed anything for us and even though the risk of complications is small, it wasn’t worth it to us to take that chance.

People ask all the time if I wanted to know beforehand. In some ways yes, but it all worked out the way it was supposed to for me. I had a beautiful, uneventful pregnancy. I enjoyed every day of my pregnancy. I was never sick and I felt so alive during that time, so I look back on my pregnancy with very fond memories.
The next morning after Katie’s birth, Katie went back to the nursery some time around 4 am so I could rest. When they hadn’t brought her around to me around 8 or so, I wondered what was going on. Kiley went to the nursery and he was told she needed to stay in there a little longer. He then went home to shower and change. While he was gone, the doctor came in with a nurse and told me that they thought she had Ds and that she did have a heart defect. I was all alone and I remember asking the doctor what made her think Katie had Ds. I was extremely calm—almost no emotion. I remember telling them that I wanted to go to the nursery and see her and that I wanted my doctor called and I wanted to be released to go with Katie to the other hospital. (We were transferred 1 1/2 hours away to the University of Florida.) I called Kiley at home and just stated what the doctor had told me. He started crying as did my parents when I told them. I started getting visitors prior to us leaving the hospital and I was extremely calm through all of it. No tears but no real joy either—just smiles of I can handle this. I just accepted it because I knew that I had two ways to deal with this. I just felt like I had to be strong for everyone else around me. It was only when I was in the car and we were almost to Shands and Martina McBride’s song In my daughter’s eyes came on that the tears started flowing. I was talking to my sister in law at that time and I couldn’t speak because I was so taken with the words of this song. Now mind you, this was just a random radio station we had on—just background noise as we were all lost in thought on the drive down. For me to hear that song---I wondered if that was how my daughter would see me—what would our relationship be? What was our future?

Katie arrived by ambulance that afternoon and we followed after running home and packing some things for our trip. I remember walking in the hospital which was packed with Sunday afternoon Easter visitors and I just remembered how badly I needed to see her—that I needed to hold her. She had been taken up to the level three NICU to be evaluated. We did not leave her side until after midnight because we wanted to see all of her doctors. Those first few weeks were a whirlwind. I would wake up and go see her as soon as I got up and I would stay until 10 pm or later each day because I didn’t want to leave her. I would start a carepage for her around day 19 or 20 of our stay. You can read the beginning of our story from carepages here. Now mind you, back in 2008 I didn’t have a laptop and my cellphone was a pay as you go phone because I never used it. Prior to starting her carepage, I did what I have done since I was a teenager-- I journaled by hand all my thoughts of those first few scary, uncertain weeks. Late at night some nights I would lie in my bed at the Ronald McDonald house and just cry silent tears—tears of the unknown, tears of exhaustion, tears of joy, tears of thankfulness.
We would stay 6 weeks in the NICU. We went from level 3 to level 2 and then back to level 3 for another week after we had a scare and they had to bag Katie due to her oxygen levels dropping in the twenties and thirties. Talk about feeling hopeless. You have a massive amount of people running to your bedside and you are sitting there wondering if your child is going to breathe. After Katie was sent back to NICU 3 for the week, we made it back to NICU 2 and we stayed there the rest of our trip. We became friends with the other moms (some babies are there for 3 or 4 months or longer) and with the staff. We fell into a routine and it became a little easier not to spend my first waking moment at her side. I would sleep well at night after those first two weeks and I would get up and not rush to jump to her bedside. I knew that once we left, all her care would be up to me, so I learned to appreciate that these highly trained nurses would take very good care of my baby while I wasn’t there. We stayed in the hospital for 6 weeks because she was having trouble breathing and with her feeding issues. We were able to bring her home with a heart monitor and oxygen and she didn’t have to come home with a tube to help her feed. Once she was home, we worked on keeping her as healthy as she could be and helping her to gain weight prior to her surgery. She was 5 pounds when she was born, lost down to 4 lbs 12 ounces and left the hospital at 6.5 lbs.
I can’t tell you how ready I was to be home. It is not easy to be away from home, just having had a baby and dealing with all the fluctating hormones and dealing with all the complications that she had at birth, not to mention being away from my son for 6 weeks and thinking that this was not what I had in mind for a maternity vacation. It wasn’t the birth story I had planned out to go along with my fabulous pregnancy, but it is a story of how I was changed after that moment of hearing the words Down syndrome.
Looking back, I can tell you that that time was a gift to me. God used me in a way that to this day has changed who I am. His blessings are revealed to me daily and I am grateful for this life that I live, grateful that I am Katie’s momma and that I get to love her in a way I can’t describe. The rest of the story to be told later this month…..

A is for Amazing Appearances’ 31 for 21 day 4

2011-10-04T22:38:00.001-04:00

This is my girl, one of the many beautiful faces of Down syndrome. We are a society obsessed with appearances. I know my daughter gets second glances all the time. She doesn’t fit society’s definition of a “normal” appearance. I see how the media of TV, computers and print ads via magazines play into what we feel is the “perfect” appearance. How many times have you looked at someone and at first glance made a quick assessment of them? I know I am guilty of it many times over. It is so easy to quickly glance at the person who is dressed “weird” and label them a nut, someone who looks put together and carries themselves with confidence can be mistaken as snobby and better than the average person, the person with the blue hair and all black clothes are labeled as “suspicious”. I could go on and on with the labels we place on each other. I like to remember that God created my Katie and those who have Ds as well as every other person on this Earth as someone who is in his image. How can we label someone with just one glance? Why do we do it? Just human nature I guess? One look at my bug and she is instantly labeled. Have you ever gotten to know someone and years later they tell you what their first impression of you was? I have gotten that story told to me several times. One by a best friend of mine who thought I was standoffish and too good to socialize with them. Yet here I am 20+ years later with that same best friend. What if this person had just written me off at the first glance? To those of you who look and make assumptions of our children and adults with Ds—look again and again if you have to. Remember that they are someone with feelings just like you. They hurt, laugh, cry, and smile like you. This is someone’s sister, brother, daughter, son, cousin, friend, neighbor, aunt, and uncle. Don’t be so quick to judge what you don’t know. You might find yourself extremely pleased once you find the beauty that the first glance may have caused you to miss.

Now, some info about Down syndrome since this is awareness month—a few traits that can be present in the appearance of a child with Ds. These can include:

low muscle tone
upward slant to the eyes-eyes are shaped “almond like”
brushfield spots in the eyes (light colored spots in the eyes)
single deep crease in the palms of the hands
a flattened facial profile
a small mouth which makes the tongue seem large
small, lower set ears
pinky finger that curves inward
larger than normal space between the big toe and second toe
round faces
short, stubby fingers
smaller head
fine hair

If a doctor sees several of these features, they may suspect that Down syndrome is present. Ds confirmation is done through a chromosomal analysis at birth. This is called a karotype or they can order a FISH analysis which can result in a shorter wait time. Prenatally ultrasounds and blood samples are taken which may show markers for an increased risk of Down syndrome. These are not definitive tests, but families can choose to undergo chorionic villus sampling or amniocentesis for an almost 100% positive diagnosis. There is also a new blood test screening which is in the works that will offer a less invasive screening tool with an almost 100% accurate diagnosis. This test will be available soon to the public. Not all people with Ds have all of these traits. Some have more than others and some have less—just like we all weren’t gifted with common sense or size 6 bottoms!

Being different 31 for 21 day 3

2011-10-03T23:38:00.003-04:00

Why is being different talked about so much? Why can't we learn to respect and admire people for the very things that make them stand out? My son loves the color pink. As in, "mom, can we paint my room bubblegum pink and lime green?" Uh, no son, I really don't want to have to repaint in 6 months when you change your mind, but we could pick up a nice comforter set in those colors! Every day his love for pink is on display. His main pair of shoes that he wears is a very traditional shoe. Popular name brand, style is just like every other million pairs being worn today. What I love about his shoes though are his hot pink shoelaces! He has no fear about wearing them. Same with his skates--typical look, but the hot pink laces are present. In middle school, kids are trying to find themselves and their way around the maze of adolescents. It can be a very trying time and I most certainly have found that out this past year. Every day that he wears these, this is a statement about how one small difference can stand out. I am reminded of that every time I look at them. I love that he is bold enough not to care what people think.
Which leads me to the small difference the extra chromosome makes. My Katie was born with one extra chromosome--the difference between standing out and blending in with the crowd. We went to our local amusement park this weekend. She was the object of quite a few stares and second glances. When I tell you that I am so blessed to live here, I really mean it. In the three years that I have lived here, I have never once heard any comments about how my daughter looks that hasn't been anything but positive. I know that the rude comment or joke at her expense is probably coming. Breaks my heart before it even happens. I believe in the good of man and I believe it far outweighs the shortcomings of man, but I am realistic in that I know that there is a lot of cruelty in this world and my daughter is going to experience that one day because there is still so much ignorance out there. Does she get stared out? You betcha! I watch people watching her. I notice people noticing her. It makes my heart proud though. You know why? People notice the difference and they really don't care! I have heard many horror stories over the last 3 years about rude, snarky comments made to other people. I have cried tears over people who couldn't accept the extra chromosome. I have been angry over the ignorance of what people DON'T know about special needs and Down syndrome and how they see these kids as people who "suffer" from this condition. I am saddened that so many parents choose to abort these wonderful blessings when they hear the words Down syndrome. I am frustrated that misconceptions still exist about what people with Down sydrome can and can't do. Yet I know that each interaction my daughter has with someone, maybe she is helping to change that person's perception of life.
Being different is about being your own person. It is being true to who you were born to be. It is about saying pink shoelaces are the bomb no matter how many people see it as ugly. It is about having 3 copies of the 21st chromosome and rocking those chromosomes for all they are worth!
My daughter is more like her peers than different. She is learning everyday. She is the second glances, she is the face to say "hey, I look a little different than most people, but man, don't I look good!" Who knows, maybe one day Katie will be the one rocking out the colored shoelaces with the very typical shoes, showing that being different is really just being yourself and that is a great thing to have ownership of. She already rocks everything else she does!

Just a note---I originally wrote this post in April 2010. I guess I saved it in my drafts and forgot about posting it. I thought I would share it tonight. My son doesn't wear hot pink laces anymore, but he still loves all things pink. Of course Katie and I are just like him--we love pink too!

21 things about Katie 31 for 21 day 2

2011-10-02T21:59:00.001-04:00

I am going to take a cue from what I did last year during this challenge and probably do an A – Z post. A letter of the alphabet each day for 26 days. I thought I would do what they are doing over at http://babycenter.com and do a 21 things topic too. This is probably a post for another day, but I can’t say enough good things about that site. I relied so much on babycenter when K was born. I spent every day there reading, asking for advice and sharing my experiences. When I didn’t know where to turn—I found solace in a group of internet moms just like myself. I don’t post on babycenter very much (very rare) due to time constraints, but I refer everyone I know there. Those ladies are fantastic and so knowledgeable.
So, 21 facts about the bug….
1. Kaitlyn has nondisjuction Trisomy 21, which is the most common form of Ds. There are also two other forms of Ds—translocation and mosaicism.
2. K loves cool ranch Doritos. She would eat these every day for all meals if we let her.
3. K loves school. She gets so excited when we leave in the morning to go.
4. She likes to chew on all the hairbrushes in the house—sensory issue for her. I have bought her some chewlry to see if this will help, but the only thing she chews on is the hairbrush.
5. She is a huge Dora the Explorer fan. Funny that Dora and Katie do all the same things right now! (like going on the potty and laying down to go to bed)
6. Signing Times is her favorite set of videos ever. We have been signing with K since she was a baby and she is in love with Alex, Rachel, Leah and Hopkins. We can’t recommend signs enough to everyone.
7. She can swing all day long.
8. She can’t resist looking at herself in the mirror at all times of the day.
9. Where is Thumbkin, Patty Cake and Itsy Bitsy Spider still make her smile every time.
10. She loves to brush her teeth. She has been going to the dentist since she was 1—she still doesn’t like that experience though.
11. She loves swimming and bath time. She will get in the water and stay for hours if you let her.
12. She is learning to sign her name and knows when we sign her name.
13. K has a dimple on her left cheek.
14. She had heart surgery at 5 months. Same surgery that her brother had at 19 months.
15. Diagnosed with Infantile Spasms (seizures) at 8 months. Has been seizure free after almost 4 months of numerous seizures daily. She is still taking medicine every day for this.
16. She loves to play ball and likes to watch it on tv. (thanks to dad and Blake I believe)
17. She loves to play rough with her brother, especially wrestling with him.
18. Her eyes are blue, but they can look a different color depending on the weather and the clothes she wears.
19. Her way of saying bye is to blow you kisses along with a wave.
20. She loves to look at books.
21. She is an amazing child, so full of life and love. I love her so much. Words can’t even describe what I feel for her (or my son). We are blessed!

Back to blogging 31 for 21 day 1

2011-10-01T22:12:00.001-04:00

It has been 5, almost 6 months since I last blogged. I really wasn’t sure if I was going to do the 31 for 21 Down syndrome awareness challenge, but I felt that this would be a good way for me to try blogging again. It has been almost a year since I opened this blog up---for two years this blog was mine, sitting here blankly with not one thing written. It isn’t as if I am not inspired because if you know me, you know I am constantly talking and I am inspired by so many things in my life. Of course my children are my biggest inspiration. I think of how much I have changed in the last 3 1/2 years since my Katie was born. My eyes have been open to so much more than I knew possible. So why wouldn’t I want to share? I guess that I am constantly trying to find time to fit things into my schedule and I just didn’t want to commit the time in keeping my blog current. Anyhow…..I’m back and that’s really all that matters I guess.

So this month is Down syndrome awareness month. This is a way to further bring Ds to the forefront. I know that I really didn’t give Ds a thought prior to Katie being born. I had heard the words and had a couple of limited encounters with people who had Down syndrome, but that was it. It just wasn’t part of my world so to speak. I have said this before, but one of my purposes in life became so much more defined since her birth. It is one of my life’s missions to educate those to the world of Down syndrome, to change people’s perception of what they thought they knew about Ds, to show families that life is not doom and gloom for those living with Ds. Sure we have therapists, we have IEP’s, we have stares among other things, but we do everything any other family does. I like to think of our lives as being enhanced by Ds, most definitely not defined by it.
My sweet Katie has been doing very well since I last updated in April. We enjoyed our summer and started back to school in August. It was a rough two weeks to start with, but my girl loves school now! First day of school pic! An instant classic!
She cannot wait to go everyday. I thought that I was going to fall apart at the beginning of school when Katie would cry every day as I left her, but her teacher made me see the crying as something encouraging. She told me that Katie was aware that she was being separated from us. Separation awareness meant she wasn’t just in her little world anymore. After she told me that, I was at peace with the crying as I left her.
The other day I started to keep her home from school as she acted like she wasn’t feeling well. When I told her we were going bye bye, she said school and looked at her backpack and said pack. (I had left it on the counter because I thought she was just going to stay over at my mom’s.) She wanted to go to school and I guess she wanted her backpack! How dare I try to leave it on the counter! Off to school she went. She is doing so well in a routine and learning so much. I can’t believe the change in her since those first few days. We have her going 2 days a week to a private preschool, full inclusion and the other 3 days a week she is at the public school in a special needs class. She is thriving in both places. Her personality came alive! She is finally initiating play with her toys by herself! Now I have to clean up all the toys and everything else she pulls out all around the house whereas before she never touched her toys unless I pulled them out. It really is amazing to see all of her progress. How blessed I am to have her two schools and the staffs teaching Katie. They are incredible and I am so grateful that she is exactly where she needs to be. We get the best of both worlds.
Enjoying some playing time with her classmate Juicy!
Her beautiful smile!

My sweet/sour tween Blake is doing well also. He is playing football and staying busy with school and his social life. There is a 9 year age gap between my kids. I feel like I am raising two only children. In a few short years, my son will be graduating while my daughter will be in 3rd grade. I wish that Katie had a younger brother or sister, but love the 2 God has given me with all my heart. Heck, I wish I had about 4 more kids! Who knows what life will bring for me?

Blake and Katie at the zoo this summer.
So, look for a post everyday from me. I am going to try to mention Ds in each one. How can I not share all the wonderful awareness Ds has brought into my life these last 3 years?!

Happy Down syndrome Awareness Month!!

2011-10-01T19:12:00.001-04:00

The following post is copied from our group blog. If someone happens to come to my page looking for Down syndrome information I want to encourage you to check our group page out for links and information. We are at http://southgeorgiadsa.blogspot.com.

Greetings everyone. As we go into the fall season, we are celebrating many things here in Georgia. Things such as fall football being in full swing, the cooler temperatures, the gorgeous changing of the tree leaves, and many fall festivals. Did you know that this is also the month to celebrate the extra 21st chromosome? Before my child was born, I had no clue. This is just an extra way of really bringing Down syndrome into the mainstream. We have to continue to be advocates heard on every level in order to promote acceptance and understanding of what Down syndrome is.

We will be joining other teams for the annual Buddy Walk in Tallahassee, Florida next weekend (October 8th).

Pre-registration is now closed, but you can still register the day of the walk. The event takes place from 9 am-12noon. Please remember to wear sunscreen and be prepared for warm weather. The walk is a fun mile. We plan on walking together as a group. For those of you who have pre-registered, shirts will be issued the day of the walk. Please let everyone know to plan on changing into their shirts after we receive them once we check in that morning. Concessions will be on hand for food and drinks. For more information, please click here. We look forward to representing our group and collecting ideas as we move forward in hosting our own walk here in Valdosta next year.

In other news, the group had a fun outing to Leapin’ Lizards Fun Zone here in Valdosta for September. This is a great place in a safe environment to allow your children to play. For more information on Leapin’ Lizards, look for them on Facebook or here.

We are still in the process of securing a regular meeting place for our group. Please continue to follow us here or on Facebook for updated meeting information. Our next scheduled meeting will be November 12, 2011, meeting place to be announced at a later date.

We also had a chance to represent our group in our first community awareness outing. Moody Air Force Base held a grand opening for their new Child Development Center and invited us to be present at a table with our information. This was a great way for us to help get the word out in the community about our group. We networked and presented our group information to many different agencies. Please look for an updated post in the next week as we highlight what these groups have to offer the special needs community here in Valdosta and the South Georgia area. Thank you to Emily Smith and Polly Chase for going out to Moody to sit at the booth. Another great big thanks to Emily for helping to coordinate our group being at this event and thank you to Moody Air Force Base for allowing us to participate

Our table that we had set up at the event.

Emily at the booth. Her beautiful daughter Renee in the photo sitting in the chair. Maggie is another one of our beautiful kiddos. She is to the right of Renee in the photo.

Part of the playground at the Moody Child Development Center.

Emily and her brother Parker trying out the playground equipment.

As we continue to move forward with our group, please continue to spread the word that we are here for our Down syndrome community. We have many great ideas for the future of our group. Thank you for your continued support. As always, if we can do anything for you, please do not hesitate to contact us.

Happy Down syndrome awareness month! Spread the Ds love!

Alexander is ready to come home!

2011-04-10T22:40:00.002-04:00

When I find myself in a funk, I usually can get myself motivated and back on track. Sometimes it takes longer than other times. We have been busy here and I just haven't had any motivation to come here and blog despite the abundance of topics floating around in my head. In fact, the next 6 weeks will be filled with many activities, many to do with Katie and Blake. More about them in another post soon. What I never feel slack about is advocating for orphans.

I have been posting about adoptions and advocacy for Down syndrome orphans and I am just in awe of all my mommy friends who are in the process of adoption. It doesn't feel like it is enough to just blog and donate for them, but it is each of us taking one small step which can lead to change. To know that these kids will head down very different paths all because someone loved them enough to make a difference---well it fills my heart with such love. I will never get tired of hearing the stories about these children, of hearing that another one is saved, of knowing that I socialize with the biggest and brightest hearts here in this world.

Over on the page to the right is a button for Alexander. His forever family is in the process of bringing him home. I read her post tonight about how his 6th birthday is here. 6 long years in an orphanage. How sad that makes my heart. I know his next birthday is going to be a blast, but it is this birthday that I can't forget. I think of all we do here to celebrate a birthday. Birthdays are meant to be acknowledged, to let someone know that their arrival in this world is a special gift, that it is a gift every year they celebrate one. I look at his picture and I just melt every.single.time.

How can you not love this face?

He doesn't know any life other than the one he is in now. I can't wait to see him grow up with his family, the Taylors. You can follow their story and inspirational posts here. They are in the middle of fundraising to fund his adoption. You can make a tax deductible donation to his account and enter a chance to win an iPad 2. But again, it is never about the chance to win a prize. Your gift is the gift that will never stop giving. It is providing this family the chance to forever change his life. If he is smiling this huge now, imagine what he is going to be doing once he comes home. I for one can't wait to see it!

Praying for children to find their forever home

2011-03-31T19:26:00.000-04:00

I have had many posts in mind relating to different subjects, but I have not been able to stop thinking of something constantly that has tugged at my heart since I first heard this story and saw this picture. My life is full of good things, so my stories can wait. This boy coming home to his family cannot.

Kirill waiting to come home with his mommy.

This picture speaks me to each and every time I have looked at it. In this picture this little boy is right where he needs to be, in his mommy's arms being loved on. But, he isn't in them permanently yet. He was denied his family. Since this story broke about the Davis family (who I don't know), we have seen our community come together to share his story. The Davis family is appealing this decision so that he can come home where he belongs. You can follow Kirill and the Davis family here. Please be in prayer for them as they continue to lay before God their hearts desire, one of which is to complete their family.

We have two more families standing before the judge who denied Kirill a chance to come home. One family, the Hooks, met the judge yesterday. Court was dismissed until tomorrow, so we are praying that this judge is going home to think of how she can forever alter the story of a child who has no voice in the system there. Another family, the Moreno's, will also stand before this same judge soon. Pray, pray, pray people. The fate of these children lie in this person's judgement. Kirill was the first Down syndrome adoption attempted out of this region. There is still so much work to be done on behalf of these children as evidenced by the decision to say no to someones future.

I read a book the other day. I honestly wanted to read it because I don't want to ever forget what these children need. That we are the voices for the unspoken. The book I read---The Boy from Baby House 10: From the Nightmare of a Russian Orphanage to a New Life in America, was about a young man who was able to leave the system. The link to this book is here. He remembered his time in his baby house and in a mental institution before coming home to his mom. Very moving book about Vanya and those who helped him to a new life.

The baby homes are the better places for these children when they are dismissed from their families. It is far better than the alternative. They are taken much better care of than in the mental institutions where they are assigned and sent as young as 5. How could children be made to live with grown adults? There are horror stories of what happens in these places. I cannot turn a blind eye or ear to what the fate of these children are. I think of those children being fed assembly line, never knowing how a sweet, ripe, juicy strawberry will taste. I think of those children lying in their beds with no soft touches, no sweet kisses, no I love yous being spoken to them, their cries unheard. I think of these children never given a chance because of circumstances beyond their control. I think of how lucky my Katie is to be here with me. That she has a chance to live a good life. We have to remember that even 50 years ago here in the United States, many children were sent to institutions here. In the United States, we have shown the potential of these children when given a chance to be loved and to be raised in a home. We, the families of those who have children with Down syndrome, are the examples for the countries who still put their babies in these homes because they have been told there is no future for them. The pioneers of this movement belongs to those such as Andrea Roberts with Reece's Rainbow, who help bring the faces of these children and their stories to us here, to those of us who can help them.

It would be easy to be bitter and full of dislike for a judge who said no, but this is far bigger than a judge. This is about working on this judge's mind and heart. It is about making this judge see the potential of the life that they can be a part of if they aren't sent to an institution. It is about knowing that love, comfort, praise and believing in someone can be the catalysts for a different path in their life. Something is bigger than this judge or even anyone who doesn't believe in our children. His name is God, our Lord and Saviour, the reason we exist. The reason Katie and Kirill exist and all those with an extra chromosome. My fellow believers of Christ, please take a moment to pray. Pray for those who need our voices to be heard. Pray for those that don't know you, don't realize the redeeming love and life you bring to us. Change their hearts by changing their minds.

Cry out for insight and understanding. Search for them as you would lost money or hidden treasure. Proverbs 2:3-4

Hope is putting faith to work when doubting would be easier. ~Author Unknown

Happy Birthday Katie!!

2011-03-22T17:53:00.000-04:00

HAPPY BIRTHDAY KATIE BUG!!!!

Today my sweet bug turned 3. It is so hard to believe that 3 years have passed since she first arrived and was placed in my arms.

Katie the day she was born.

I still remember that day so vividly. The details of this day and the days to come are forever etched in my mind. The first moment I held you, I remember feeling such intense love and pride. I helped to create you. From the moment you were conceived, I prayed for you and asked God to bless me with your presence in my life. For 8 months, I shared thoughts about you that only the two of us could share. For 8 months, I nurtured, loved and protected you in a way that only moms can do. For 8 months, you were mine alone. For 8 months, you were being created exactly as God wanted you. 47 chromosomes would be a part of the rest of your life the Lord said, although I didn't know that at the time.

Little did I know that on Easter Sunday, my world would be forever changed and that life would present itself in ways I never imagined from the day of your birth until the present day. We would spend 6 weeks in the NICU. The first few days were spent trying to understand what Down syndrome was and everything that would come with that diagnosis. You were fragile, not eating and having trouble with oxygen levels and other things related to your heart. Oh how my heart for you. I remember feeling so many emotions. Sadness, shock, grief, helplessness, love, joy and confusion all wrapped into those days that followed your birth. Still through all of that, I felt blessed. Blessed that you were given to me. Blessed to have you in my arms.

Right after we arrived at Shands. Katie rode by ambulance, while we went home and packed. This was right after we saw her again.

Why was this happening to us? Why did I have to have 2 heart babies? Why couldn't you be born with Down syndrome and no other issues? Why did you have to have Down syndrome? What was your future going to look like? What about my future? Why couldn't I just go home the day after like everyone else and love on my new baby? What does Down syndrome mean? On and on the questions went. So many questions, so few answers or so I thought then.

I felt like such a prisoner to this new world with Down syndrome in it and obviously Katie was a prisoner in the NICU!

The days that followed started to stabilize out. We started to find a rhythm to our days. Still, I could hardly bear to leave Katie. I didn't want her to not feel me there. I came home to Valdosta for approximately 8 hours during her stay and that was only because I had to sign her up on my insurance at work. Eventually, the last couple of weeks there, we were able to wake up and not have to rush to the hospital and stay until midnight. We would venture out for something to eat outside of the hospital. We would go to Target and shop the baby aisles. We could go back to the Ronald McDonald house and not feel like we had to sleep in our clothes in case we needed to jump out and get back to the hospital stat. Katie started growing a little more.

We were finally allowed to go home and start being a normal family again! As we went through the months, I saw Katie growing stronger as was I. Her strength challenged me to do better and be better.

Still on oxygen after coming home.

At five months, she would have heart surgery.

Enjoying the time before challenges would be faced again.

Blown up from the steroids, but they worked and after several months, the seizures were in remission.

Looking pretty despite not feeling well due to seizure meds and steroids.

Her 1st birthday soon followed and with that new milestones were reached.

Hitting milestones such as walking.

Celebrating her 2nd birthday!

An now we are here, another year later, celebrating her 3rd birthday! It doesn't seem possible. So much has happened in these 3 short years. Things I never would have imagined possible 3 years ago. My eyes have been open to beauty I did not know existed. I am so thankful that God allowed and continues to allow me to be her mother. I kiss her face and I am kissing a pure soul. I look into her eyes and I see innocence. I see her joy and I see the hands of God on her.

I think back on the moments when she was first laid in my arms. My eyes were filled with awe and tears then and to look at her now, my eyes are still filled with awe and tears. She has come such a long way since those first shaky weeks. She doesn't know what it means to give up. When she falls, she gets right back up. Every. Single. Time. (one exception, the day she broke her leg :)) She doesn't know any other way to live. She doesn't see that people may take a second glance at her. She doesn't know that the world is full of people who pick on people with her diagnosis because they aren't societies definition of normal. She doesn't see that people will dismiss her because they think she is too slow to learn. Despite everything, Katie keeps on pushing through it all. She has done it on her time frame and will continue to with a lot of encouragement and love.

Katie, mom loves you so very much. You have filled my heart with a love beyond any words. Every day is a blessing and I don't forget that because I have you to remind me of all that is good, beautiful and pure in this world. Three years ago you entered my world and changed me forever. I only hope that someday you can be proud of me and that you will know I tried my best everyday for you. I will always fight for what is right for you. I have so many hopes and dreams for you. You made one of mine come true the day you were born. Happy Birthday my sweet bug. Love you forever and ever.

2011-03-21T22:12:00.001-04:00

~The Special Mother~

Most women become mothers by accident, some by choice, a few by social
pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

~Erma Bombeck~

Getting ready for K3

2011-03-21T22:10:00.001-04:00

It doesn't seem possible that tomorrow my little girl is turning 3! Where has the time gone? The Early Intervention program we have been with is for babies ages 0-3. This is a nationwide program--ours in the state of Georgia is called Babies Can't Wait. Each state has their own name for their EI program and services vary from state to state. At age 3, state services are continued through the local school system. She doesn't have to go to school at this point, but she is going to need speech therapy for years and we want her to have social and educational opportunities so that she can continue to thrive. We have been busy with transitioning her to the school system this past month. Her IEP (Individualized Education Program) meeting is tomorrow on her birthday. The day after that, she can start school! She is going to the same elementary school Blake went to and I am so excited for her, yet dreading it for me. I am sure that we will be at the school more with her than we were with Blake. (Clarifying a point here--Blake was a great child in elementary school--he stayed out of trouble and made good grades, so we were only at the school for special events for the most part. Working full time during school hours makes it hard to get away for lunches, etc. Our schedules are a little different now. I have a day off during the week and Kiley does too, thus making it easier to get to school.)

Anyway, I am so nervous about her going to school. She is so tiny compared to everyone else. She is my baby! We did her school testing a few weeks ago. Do you know how you can be in a moment and you are just talking to yourself and praying for an outcome you want? Well, that was me on school testing day. I wanted Kaitlyn to show them some of the things she can do, but I felt like we were just seeing all the things she couldn't do. I know school is different in their goals. They are there to provide her with an education. Her goals for school will be orientated to that. We are seeing her pediatrician this week for her annual checkup. I will be discussing whether we need a referral to see an Autism specialist or not for an evaluation. I know I am not supposed to compare her with anyone else, but it is the parent instinct in me that brings these thoughts about from time to time. I know she is going to be no one else but herself, just the way she has been these last 3 years. I just want to see her go in there with her peers and blossom. I think that is what most people want for their kids and I am no exception. Anyway, it is hard to believe that the time has come to let my little girl go off to school. Praying that all will go well tomorrow at the IEP. Will update our meeting and how it went later in the week.

World Down syndrome celebration a great day!

2011-03-20T12:27:00.011-04:00

I am so excited to announce that the Down syndrome Association of South Georgia had their first outing yesterday to celebrate World Down syndrome day. I started getting together with 2 fellow moms about a year and a half ago after meeting them through our special needs outreach group here in town. We would hear of a new mom who had just given birth and would ask them to join us in a get together. 7 families later and we were ready to reach out to our community and the surrounding communities. My fellow mom and friend, Erin, said we just had to go out there and just jump in with both feet, so that is what we did! We decided to have a celebration at McKey park and invite the community. Erin got our information into the paper and off we went!

Yesterday was a beautiful day. Perfect weather. Not a cloud in the sky. Temperatures in the high 70's/low 80's. Living in the deep South, this is the weather you appreciate all year long. We know long, hot, muggy days are ahead in a few short months. We couldn't have asked for better weather.

The turnout was great! I met several new faces yesterday. Down syndrome was represented from ages 2 months-37 years of age. We mixed and mingled and enjoyed each others' company. We had a balloon release at the end of our celebration to honor our children and all the other people in this world who have Ds. To the families who agreed to help me by bringing anything I asked for and for helping to invite and get the word out to other families, thank you.

World Down syndrome day is actually tomorrow (3/21). For those who don't know, this day was picked because of our family member having 3 sets of the 21st chromosome. That is why you may hear Trisomy 21 as another name for Ds. The day was picked as a way to celebrate, honor and promote acceptance in all people who share an extra 21st gene. My daughter is worthy of this day and so much more. Everyone has a gift to bring to this life we all live and love. I have never been more certain that I am to help be a voice for Ds. My daughter is one of the faces of Ds and my heart and soul is filled with love for those who have Ds. I hope our voices and actions will help others to see that there is more to Ds than they ever knew possible!

Happy World Down syndrome Day!! 

Katie and Kiley

Now, my friend Erin took much better pictures than I did (and probably hundreds more than I did), but I am going to attempt to share a few I took on my little point and shoot camera.

Eslea and Emily

Mary Nell and Joy

Nathaniel

Maggie and Scott

Maggie and Katie

Trying to get everyone together for a group shot!

Anna and Thanayi

Maggie and Kelly

The beautiful sky during the balloon release. I couldn't see when I took this picture, so it was just a random shot. I got some of the balloons in the picture regardless.

Renee

Lily

Brian and Griffen

Yummy cupcakes in the Down syndrome colors!

Adoption denied

2011-03-17T13:28:00.001-04:00

I was going to blog about something different today, but my heart is no longer into the post. I saw this posted on my facebook page this morning and I am just so saddened by the post that I have linked here to my blog. I am so tired of hearing that our children are unworthy of life!

God created my daughter and those who share her extra 21st chromosome for a purpose! He is never wrong! The bible says this---For You created my innermost being; You knit me together in my mother's womb. I praise You because I am fearfully and wonderfully made. Psalm 139:13-14

I cried when I first read that this adoption had been denied, then I became angry and sad. I am praying that this judge's heart would be changed. There are some more adoptions coming up before her soon. We have to pray that she will feel God's presence on her and in her, and that her heart would be opened to allowing these adoptions to proceed. There are still so many prejudices that prevail and will continue to exist until we are freed of this world as we know it. I long for the day when hate, ignorance and evil no longer exsist. Because this judge said one little word, a child's life living in freedom has been denied. My heart is broken for this little boy. I am praying for a miracle. Praying that maybe this judge will reverse her decision. Praying that she will be convicted by her actions and change them. Please join me in praying for her, this family and especially for this little boy. Please click on the link below and read the post.

Micah Six Eight: Hold them Close: "Hold your little ones close those of you who have crossed the waters and brought them safely to this side of the ocean. Hold them clos..."

Loving life, Loving Lera

2011-03-12T21:27:00.000-05:00

My friends---I would like for you all to take a moment and pray for this child--Lera. Isn't she beautiful?

Please visit her page (click on her name and it will link you to her page) and consider making a donation to help get her home. For a ten dollar donation to her fund, you will be in the running for some great prizes including an iPad among other things. This is tax-deductible also. With your ten dollar donation, you will receive more than a chance to win some great prizes. The ultimate prize will be this girl being allowed to come here to the States to start a new life. You are helping to buy her a future that she will love! A chance where she can come home and shine. A place where she will be loved beyond belief. Away from a life of sponge baths and mush to eat every single day. A place beyond the walls of the place she calls home now. If this adoption falls through, she will be transferred to a mental institution soon. There is no future there for these kids. She will be a number in the system.

She has lost several families who committed to her and had to back out of the adoption. The Higbie's are in the process of adopting her, but they were told they cannot move forward unless her family raises an additional $14,000 dollars in the next 19 days. This is not an impossible task. We are going to call on the one who can make this happen. Lord, we lift this child up to you. We ask that hearts will be open to calling out your name on her behalf. I have often asked myself and the Lord how can we make a difference when there are so many who need. Every life we save, one at the time, is a gift to God. We show him that we are heeding his call.

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. – Romans 8:28 (NIV)

I am called to pray for this child. I am called to ask you to help this child through your prayers and donations. I have never been one to ask (beg) for money, but I am begging for this life to be saved. I am begging for you to pray that we, the Higbie's Christian family, help save Lera's life. Yes, after we save Lera, there will be another child to save. Yes, I will ask you to help me again. Yes, it is all worth it.

Final fundraiser for the Sader family--Let's bring Melanie home!

2011-03-04T18:53:00.000-05:00

I am always in awe when the body of Christ comes together to show others what his followers can do! As I have said many times before, my Down syndrome family is incredible. I love the women who I network with. There are so many wonderful stories out there about the goodness of other people. People who are called by the Lord for a certain mission. Something I have witnessed several times in the last year are my fellow facebook friends adopting internationally. Many of these people step out on faith alone. It cost a good bit of the green stuff to fully fund these adoptions. Many are called to action, few step out on faith and prayers to heed the call regardless of what their situation is. Melanie's forever family, the Sader's, are doing just that. They are so close to fully funding their adoption of precious Melanie. This is a last hurrah to get them over the final hurdle.

Another sweet friend, Cathy, hosted a fundraiser recently for the Sader's. Initially, I wanted to just donate some money and try to win a cool prize. Then I thought about giving a gift card to be donated to the fundraiser. Then I just said the heck with it--let me donate an iPod. Surely someone would give a few dollars to a raffle for the chance to win one of these. So, I talked with Deanna and Cathy and we decided to try one more raffle to get the last bit of money in that we needed. I am not called to adopt at this time, but I wanted to help in any way I could to those who are called. I have prayed for the faces of Reece's Rainbow and cried so many tears of sadness for those who don't have a home yet. I have cried tears of joys for the families who are bringing these sweet, beautiful children home. I am passionate about this cause. Please give if you are able. Your donation is tax deductible. Once you donate, leave a comment on Cathy's blog. If you don't want to comment. let me know and I will let Cathy put your name in the drawing. If you cannot give monetarily, pray, pray, pray!!

Pray not only for Melanie, but for the kids waiting to get a forever family. Pray that these orphanages can close forever because the mindset of Eastern Europe would be changed and these kids would be valued and loved and able to stay in their own homes. Pray for the child who needs to be hugged and kissed and loved by a family. Pray that these babies don't have to go to an institution to live the rest of their lives in miserable, unspeakable conditions. Pray that you and your fellow beings never forgot about those who never had a chance because they were born with one little extra cell which forever changed the course of their lives.

"The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.' Matthew 25:40

Here is Cathy's post----

Our final push to bring Melanie home

Hello dear readers. . .

While I was hosting the last giveaway for Melanie, a Facebook friend contacted me and said she wanted to do something to help raise money for Melanie's adoption fund. Donna had an idea of what she wanted to donate, but wondered if Deanna and I would be interested.

Donna's idea??? An iPod!!!!

Oh yes, we were interested!!

I am always amazed at how God's people come together to help each other. What a blessing!!!

So here we are, trying to raise the last of the money that Rob and Deanna need to bring Melanie home! What a total blessing it would be to not have to worry AT ALL about the money part of their adoption.

And just in case you forgot what this little angel looks like...

We are going to make it super easy this time. Go to Melanie's Reece's Rainbow donation page and make a donation. Then come back here and comment. You can leave an extra comment if you blog and/or Facebook about our giveaway.

Here are the giveaway items...

An 8 GB iPod Touch AND a $25 iTunes card donated by Donna:

A $25 Kohl's giftcard donated by Brenda H. (another new friend who contacted me)

A $25 Chili's gift card donated by Mark and me.

If you didn't win one of Deanna's FABULOUS tutu dresses in our last giveaway, here's a chance to win a tutu skirt...

This just added, from Johannah, another of Deanna's cyper-buddies: Beachbody DVD ( new Entitled Turbo Jam: 5 Rockin' Workouts

This just in...a GORGEOUS lab-created sapphire and diamond pendant valued at $295!!! Donated by my sweet friend, Amy. (Amy...did I ever ask you how you found Lily's CaringBridge page way back when she had her OHS??!??)

If anyone would like to donate anything else for our giveaway, please contact me at scrapbookercathy@yahoo.com. :-)

We will draw winners on Wednesday, March 16, at 9 p.m. central time.

Melanie belongs in this picture!!!!! On behalf of the Sader family, THANK YOU for your support!!!

Let's get Olga home!!

2011-03-02T22:49:00.001-05:00

This is a guest post from a wonderful momma, Patti, who shares the common bond of a child with Ds with me. She is an amazing ambassador for orphans. You can follow her blog here. There were over 25 bloggers who posted this on the same day to help raise some funds for Olga's forever family.

Let me tell your friends--every prayer, every thought, every single penny helps. When you think your five dollars won't do much, think again. Your latte from Starbucks could be missed today and you won't suffer from it. Drink your Maxwell House at home for a day and help change this child's life. Olga touched my heart from the very first time I saw her. I was looking for a child to donate to during the Christmas season. As soon as I saw her, I knew she was the one. I was the first person to put some money in her fund. I say that not to brag, but to say that my little bit of seed money was a start for a new future for her. When I saw her sitting on her slide, I saw Katie looking at me. I thought about how this little girl needed a mother to push her on a swing. I thought this little girl needed a father to be waiting at the end of the slide with open arms ready to scoop her up and do it all over again. I thought this girl needed a brother and sister to shower her with hugs and wet kisses. I thought that she needed to get in her parents' arms and have them carry her beyond the confines of the fences at her orphanage. I thought she needed to go home to a loving family and never spend another night alone not knowing a family's love.

When I tell you my heart becomes burdened when I think of these children alone, well that word doesn't really do it justice. Did you know that there are around 160 million orphans in the world? How can this be? Yes, we can make a difference by saving one at the time. If you are led, please give a few dollars to this family. You can donate directly through the chip in button below or you can donate directly to their fund set up on Reece's Rainbow. If you donate through RR, this is tax deductible.

Here is Patti's post.....

A Day to Save Olga

Dear Friends,

So many of you already know this beautiful little face....

Olga turned five last month. She has spent the last five years in an orphanage in Eastern Europe, without the love of a mommy and daddy- simply because she arrived in life exactly as God designed her. One chromosome too many, and her fate was sealed from birth.

Sealed, because in Eastern Europe, babies who are born with Down syndrome are deemed unacceptable at birth. They are discarded as cast-offs of society, and when they turn five they leave the only home they've ever known...

And I wish I could say that for most of these children, leaving that home means going to a place of safety, a place of happiness, a place where they would finally know the love of a family...know what it means to be cuddled or sung to or read to, tucked in at night, prayed for, loved.

Instead, they are taken to a place that most people wouldn't leave their family pet.

A place of living hell, where they will never know the tenderness of a parent, never know the security of being raised in a family, and there they will stay, one ugly, pain-filled day at a time...until they die.

I read a post last December that stayed with me to this day. It was called from baby dolls to bedstraps.The blog author wrote about Elizabeth, an orphan on Reece's Rainbow who had been transferred to a mental institution, waiting for a family to step forward for her. Her words still haunt me.

I wonder where she thought she was going as they led her out of the orphanage that day. Did she think that maybe it was finally her turn? That they were taking her to her forever Mommy and Daddy?

And when they instead took her inside that dreadful place, when they shaved her head and tied her to a too-small metal crib

when they turned their backs and

walked

away…

when they left her confused, terrified,

in a room where the wails of schizophrenic adults echo through the cold air

what was going through her young mind?

Did she wonder if she was being punished?

How long did she hold out hope that this was only temporary?

That any minute, they would come and take her back to the baby house

to her baby dolls and teddy bear,

to her best friend, Angelina?

Did she long to free her arms from the restraints

to cover her head with her hands to drown out

the scary noises

the scary sights

the scary smells?

That could be my Lily….

It could be your child.

And what if it were?

What if you woke up one morning

and by some hellish, twilight-zone twist of fate

your child wasn’t still tucked into that warm bed down the hall,

what if your child was trapped

across the dark sea

in that nightmare that is

the institution?

What

would

you

DO?

Rescue those being led away to death; hold back those staggering toward slaughter. Proverbs 24:11
Elizabeth is being rescued today, thanks to the efforts of that blogging mama, and others like her.

Olga is being rescued today, thanks to so many of you...you gave so much and created such a large grant that a family was able to step forward and start the process of adoption.

The Abells have done so much already, towards rescuing Olga. I can't even imagine all the paperwork and prayer and emotion and finances that goes into an international adoption. They have done numerous fundraisers, and will continue to do so until they can bring Olga home.

Through the help of so many, a grant of over $13,000 has been raised for Olga's adoption. That grant is set aside for the final travel costs and fees that it will take to bring Olga home. It will take every penny of that and then some.

Right now the Abells are in need of raising the $7,000 that is needed to submit their dossier for Olga. Without that dossier we don't even know if Olga has been transferred yet. Here in America you just pick up the phone and ask these questions. But here in America we don't tie five year old girls to cribs to keep them from climbing out.

The Abells need to submit that dossier as soon as possible- at the very least to find out if she has been transferred already- because I know an army of prayer warriors who is going to want to know that piece of information as well. And at the very most, it could be able to hold Olga at the baby house until the Abells can rescue her. I wish I could say with certainty that she won't be transferred- truthfully we just don't know that.

Olga has been so heavy on my heart for months- friends, I want you to know that I DO trust that God has a plan here.

I prayed like crazy for a way to help the Abells. I truly believe that there is a network of people who love Olga here in blogland...a net that is woven by God and is stretching out across this blessed country we live in, and even beyond to generous hearts in other nations. I really cannot express enough how thankful I am to be a small part of what God has already done for Olga, Peter and Kareen. But I don't think our job is done.

Olga needs us.

I don't want her to spend one more forsaken day in that place than she has to.

We're not doing a giveaway here today. I don't even think we need to do one- I know so many just have a heart to help and to give, and prizes were never the real reason we all gave anyway.

So I'm just asking- for one day- for you to do whatever you could to help Olga. Whether that's $10 or $20 or even a hundred...if you are able to help raise this money for the dossier, please do so HERE... This is the Abell's chip-in.

This is the link for the Family Sponsorship Page on Reece's Rainbow...every single dollar goes to the Abell's adoption fund, and every single dollar will help.

We're calling this A Day to Save Olga, because there are about 17 of us blogging mamas and one blogging grandpa who have set aside this day to blog, post on Facebook, pray, give and spread the word to SAVE OLGA.

Will you help us?

I know you will:)

Love,

Patti

Giveaway for 5 free iPads for special needs children

2011-02-27T20:11:00.000-05:00

If you know of anyone who would like to enter for a chance to win a free iPad, please direct them to this blog---Marissa's Bunny. They are accepting stories for 5 different families to win an iPad. The only qualification is that there must be a child with special needs to benefit from the iPad. Their daughter Marissa has Infantile Spasms, the same type of seizures that Kaitlyn also has. By reading some of the entries on their blog (will go back and read much more later), I see that this diagnosis has changed this family's life. They have a foundation in place and it looks like Marissa's dad works for a kick butt boss! His boss told him if he could get 1000 dollars donated to their fund to help pay for Marissa's surgery, that they would give him 50,000 dollars toward Marissa's surgery and future care!! 50,000 dollars! WoW! So, I guess his boss (bosses) have helped to fund this giveaway and other giveaways for them. I found this blog by reading a fellow blogger's page, Blogzilly. I found Blogzilly through another reader. I have continued to read Blogzilly because he also has a child who has a diagnosis of Infantile Spasms. Now some of Blogzilly's language is a little on the saltier side, but he just tells it like it is. His blog is one of the only male written blogs I read. Not because I don't like reading from the male perspective, just because most of the blogs I read are special needs and written by the moms. I relate to Blogzilly and Marissa's dad and any other parent dealing with Infantile Spasms because I know the feeling of wanting to do anything you can to control what you have no control over.

If the seizures are not controlled, the effects on the person can be very catastrophic. Severe delays physically and mentally occur. My neurologist told us early on that these seizures can be difficult to control. Even if the seizures stop--such as the case with K, you can progress from Infantile Spasms to another type of seizure later on with more than 1/5th of the diagnosed with Lennox Gastautx Syndrome. These type of seizures are also catastrophic. I have said many times over that I did not deal with the seizure diagnosis well at all. I hated to see Katie stop smiling and playing. It was like a DVD was paused during that time. All of her skills stopped or regressed. We would just look at her while she was seizing just praying that God would stop the seizures. We were lucky. The seizures started in November and stopped in Feb. We saw multiple seizures daily--those didn't count the ones we couldn't see. My sweet girl had to take very high dose steroids which did throw her into a remission. Those few weeks of steroid use were horrible, but it worked and I am so thankful that we haven't seen a regression back into the seizures. At our last neurology appointment 2 weeks ago, we got good news that her MRI looked good. We will still take high dose Keppra for several more years as our doctor told us that "the tendency for her seizures to reappear are high." So, we continue to be thankful that our daughter is spared the devastating effects of ongoing seizures. Like I said in my last post, we are dealing with some other developmental issues which may or may not be related to the history of her Infantile Spasms and her Down syndrome. I just take it day by day because sometimes looking at the future gets to be overwhelming. We are never promised tomorrow and we all know that it only takes a minute and your life can change on a dime. For my fellow parents who do have an IS diagnosis, my heart is with you. I pray for the cure of this devastating condition for our children as for the future children diagnosed with this.

Questions yet to be answered

2011-02-20T22:35:00.000-05:00

It is hard to believe that we are almost out of Early Intervention. Where has the last 3 years gone?! The next few weeks will busy ones as we transition out of EI and transition in to the local school system. My little bug will be going to K3 in one short month from now! We will test next week and then have her first IEP soon after. I wish I could say that I am not worrying about the whole process, but the exact opposite is true. I am terrified. I worry about what the verdict will be for my daughter. What is the testing going to reveal? How will I handle the results?

For the last year the word Autism has been mentioned. My therapists brought this up again a few weeks ago. As in "don't be surprised if they think she has Autism". I value what my therapists have to say. They have never steered me wrong. They have many, many years in the field of therapy with pediatric kids. I am glad that they spoke up and told me what they think. I certainly don't want to go into a meeting blindsided. That statement has left me searching for answers again. We have brought this very subject up with different professionals who did not feel that the diagnosis was appropriate at the time we were evaluated during the past year. These evaluations occurred with 2 Down syndrome clinics and 2 pediatricians over the last year with the last eval being in Nov. (4 different professionals)

I thought that back at the end of the summer I was going to get K in daycare or some type of learning childcare program. Searching for places left me on some waiting lists and ruled out quite a few places. We had it narrowed down to a few places that we really liked, but the class size I felt were too large for K to get the attention she needed. So I did nothing. I let her stay where I felt she would be happiest and safe--with my mom. I cannot change my decision. I did what I felt was right for my daughter at the time. She hasn't had as much structured "learning" time as Kiley and I should have given her. I am praying that she will get to school in the next few weeks and will be able to adapt without too many difficulties. Of course I am thinking that I have hurt her in her learning processes by not letting her go to a daycare, etc. We will know soon enough just how well she will be able to adapt in a structured environment.

In therapy, K likes to look at books. She has only showed an interest in some toys in the last month or so. We do puzzles and blocks during therapy time, but books and pictures are her favorite things and she prefers that over anything else. She doesn't like to make eye contact with us. We can call her name and she will look sometimes, other times, she is looking every which way but at us. Same with therapy. She will not focus if it is blocks or puzzles. She may look at the puzzle pieces, but she won't try to put them in the right place. She does seem to be in her own world often and is content with that. She doesn't like when we laugh loudly, she starts crying when we do that. When I sing and sign to her, she pays great attention to me. She tries to imitate the signs I am doing. She is only following a few simple commands and only when she wants to. She doesn't have a problem being around other people. She doesn't cringe in new environments. She does have some eye issues, with squinting, crossing her eyes, rolling them. Her glasses are being ordered, so if those problems get better with the glasses, we will put it to her vision. If not, is it an Autism thing or a neurological problem? She does have a diagnosis of Infantile Spasms (seizures) Her last EEG and MRI were good. Her neurologist told us at her last visit a week ago that she has a high risk for relapse. The symptoms to look for are some of the same as what can manifest as Autism signs. (the lack of focus, the delays) Add the Down syndrome to it all and we just have a big mess!

So what can we say is the cause of all this? Is this a new diagnosis to deal with? Is this just from her seizures? Is it that she is more profound in her Ds diagnosis? She has done so well in so many areas. She walked at 19 months when she had only just learned to sit herself up at 17 months and crawled at 18 months. She made excellent progress with feeding herself and drinking from a cup with a straw well before her 2nd birthday. But those are just developmental milestones relating to some gross motor skills and maybe learning a few fine motor skills. Her speech is lacking. She can speak, but only when she wants, not when I ask her to. She will sign but it is random, not on my command. She is falling behind. I don't think she has regressed. I think she has retained everything she has learned. She just doesn't seem to be learning anything new. So, I think we are going to have some serious discussions with doctors and school staff on whether we should be pursuing an Autism diagnosis or not. First, let me get through her testing and IEP and lets see how she does with a structured environment.

This is what has been weighing heavy on my mind for the last few weeks as we enter this transition period. Praying that I will find peace through this process as I search for the answers to all these questions.

212 degrees

2011-02-12T06:00:00.005-05:00

Have you ever heard of the 212 degree philosophy?

At 211 degrees, water is very hot.

At 212 degrees, water boils.

And with boiling water comes steam.

And with steam, you can power a train.

Just one extra degree.... can make all the difference.

I was introduced the other day to it during a staff meeting from one of our customer care representatives. Our video was actually the crossing the line video at www.givemore.com. ( the video is not shown in its entirety--you have to buy it I guess to see the full presentation.) The 212 degree phrase was part of that video. Our presentation had to deal with the positives and negatives in your life, at home, on the job, with every choice you make, your friends, your family, your neighbors and even the strangers you meet. Every once in awhile it is great to be inspired by different messages. I like to think of myself as a positive person. A someone who finds joys and meaning in life.

During the Ds journey I have had the privilege of "meeting" lots of moms (and some dads too) with children of Ds. We network via blogs, email, facebook, private and public groups and I am lucky to know a few IRL here in our town. I am grateful for their friendship. When I need to talk about Ds, these women are here and they understand my joys and frustrations. They know what it is like to have a special needs child. We parent differently--advice given isn't always taken, one child's struggle is another child's strength. We come from all different walks of life--different races, different socioeconomic status', and different styles of living. For some of us, the only common link with each other is our children. Some parents with children who have Ds could care less about networking. It is just a personal preference. I personally love it.

Our differences can sometimes bring heated discussions amongst our groups. In the last few months I have seen several ladies "attacked" for their beliefs. Attacks by the very people that you hope can relate to what you are going through. Things got very ugly, very fast. Friendships broken over a difference of opinion. The attacks were uncalled for. Bringing each other down when we should be lifting each other up. All I can say is why?

To my Ds friends---each of you are important to me. You offer me wisdom, a shoulder to cry on, smiles, hugs, laughter, advice and opinions that I appreciate. Thank you for your friendship.

So, I was inspired to share my 212 with a particular group of ladies due to a private message sent to me via facebook. This is my thoughts on 212.....

Have you ever reached the boiling point? 212 degrees to the bad? Stuck in traffic? Late for an appointment? Waiting on someone who is late meeting you? Been insulted? Had a favorite tv show dvr'd only to find out the last 5 minutes got cut off? Been angry at your kids? Had your dog just eat your cherry pie that you were hoping to dig into? Gone on vacation and had it rain torrentially the entire time? Got home and found the wrong food order in your drive thru bag? You get the point. How many times do you hit your boiling point? The last time I hit my boiling point was ___________________!!! (insert your last 212 degree boiling point moment here)

Now, when was the last time you reached 212 degrees for the good? When you gave that extra effort and felt like a million bucks? When were you the steam that powered the train? I admit it. I have way more 212 degrees to the bad than I want. Not enough 212 to the good. 212's are your leaders. 212's are the goals you set and made. 212's is the RAOK you did today. 212's are the people letting you go ahead of them because you have 2 items to their 20 in the checkout line. 212's are the people who smile and mean it. 212's are the people you look up to. 212's inspire you to be better, to do better, to live better. 212's have passion and commitment written all over them. Their choices fuel their goals. I say this often---we have choices in almost everything we do.

To those who are passionate about advocacy, adoption, Ds, therapies, IEP's, the dinner you are going to make tonight, the song you are going to write, the 2 seconds you are going to take off your running time (no I don't run, unless its to the bathroom!) ----Whatever it is you are passionate about, stand tall and hold your ground!! Your voice matters. Your actions count. People are watching and taking notes and making plans. Do not be discouraged. Let the critics say what they want. Ignore them. Obviously they haven't found the positive side of 212 often enough. So much easier for them to find fault then it is to be the catalyst for something good.

To my sweet friends who are making 212 happen for the good I quote Ralph Waldo Emerson. "Do not go where the path my lead, go instead where there is no path and leave a trail......"

Will you be the 212 in someone's life today? Can you find the 212 that will get your passion going? When you find yourself going 212 to the bad, take a deep breath and focus on the good. I think 212 could definitely be a great way to live!

Birthdays

2011-02-06T22:46:00.000-05:00

This past Thursday my son celebrated a birthday. It is a time to celebrate a special day for him and for us. He came into this world already loved by us and by many others. What a blessing that is, to be loved and to know that you are loved. I am sure he does not realize the depth of our love for him. I can't help but contrast that with children who have not been blessed to be born into a family who love them unconditionally. Children who have never had someone to hold them and tell them that they are loved. How can this be? How can we bring children into the world only to abandon them? To leave them in orphanages to have the same day play over and over for them? To never feel a mother's kiss on their chubby cheeks, to not have someone wipe their tears away, to not have someone rock them to sleep, to never know what a bath feels like? So many things that they have never experienced. I have prayed in my heart to hear what God's word is to me on this very subject. I know that I am to keep praying for these children, to do whatever I possibly can to help their plight out of these orphanages. I want all of these children to be celebrated just like my son was this past week. I want someone to sing Happy Birthday to them. I want them to eat cake and blow out candles and thank God for another year. We can help these children. Every prayer, every dollar makes a difference. Consider Reece's Rainbow if you want to make a difference in the lives of children whose birthdays do make a difference. At 5 years of age, these children leave the baby orphanges to go to a mental institution to live the rest of their lives out. If we can save them before that happens, we will change the outcome of their lives. If you are thinking of adoption, please think of these children. Give them the chance that they deserve. If adoption is not in your plans, consider being a prayer warrior or a monetary donor. You can make a difference!

Well, Oct really did me in! I can't believe its been 3 months since I last posted!

2011-01-30T21:04:00.000-05:00

I truly didn't think I would let 3 months pass before I posted again! I will admit that the holidays are a hectic time, but no excuses for Jan. I have to say that I have been skeptical of even blogging at all. I go back and forth with myself about whether I need to post on such a public forum. On facebook, I am part of a couple of great groups where we moms (and some dads) can network with each other. I also have some other groups that I am a part of like http://www.babycenter.com/ that I post on occasionally. I have always been more of a reader/lurker in the groups due to mainly having so little time to be active in posting. With working and trying to balance family time with some me time, posting takes a back seat mostly for me. It is very easy to get caught up in the Internet too and spend way too much time on here. My fellow Ds moms are why I want to blog. I have met a lot of new moms who need some guidance, advice and encouraging through their journey. I follow so many blogs and I want the moms that I am friends with to be able to follow our journey, to know Katie and my family. Do I worry about stuff being out there for everyone to see? Sure I do, but I figure only people who know me are going to be reading this anyway. I am sure the occasional, unknown person may stumble upon this blog, but for the most part, I think it will just be friends and family reading, so I am going to keep trying to blog. At this rate, I should get 4 posts out per year!

We have been doing really well here. Katie broke her leg a few weeks ago. She is doing well in her soft splint and we hope that she will be able to continue to wear this throughout the casting process. They said that if they put a hard cast on, she might have to be put to sleep to have it taken off. I certainly don't want that if we can get away with this. We have the father/daughter dance coming up this week. This will be K's 3rd dance. It is really a big social outing for all the dads/daughters here in our area. The girls love getting dressed up and the dads love showing them off! I admit I don't have Katie's dress yet! (insert gasp here) I have a dress in reserve (her Easter dress for this year) if I can't find a dress for her. I am waiting because her soft cast is getting changed tomorrow and I have no idea what colors of tape they have to wrap her leg with. I want the tape to mesh, not clash with her dress, so I wait to pick out the tape tomorrow and then maybe find a dress after. Either way, she will go even if she has to wear a potato sack! I hate that she won't be able to walk around but she can still have her daddy dance. She is still busy with her therapy and we are in the process of transitioning her into the school system.

I am in the process of trying to find a location/childcare for us to start up an official Ds support group in our area. There are several of us moms who meet up for play dates, but I know there is a big group of parents we haven't reached yet. I want to gather information to put packets together to bring to the OB groups around here, the hospitals and other support services for our children. For some of our parents, having a Ds child will be our only common connection, but it is important that any parent have access to others who have been there, done that at any time they need it. I do network with a lot of moms and their support has been invaluable to me. I want to be able to share all the knowledge I have gained over these 3 years. I want someone with a new dx to know they have a support network ready for them. I don't want them to have to look all over the Internet to find information. I don't want someone to wait for months after their child's birth to be able to find some parents in their area to talk to. I don't want someone sitting up in the hospital who didn't have a prenatal dx wondering what has just happened and not having information right at their fingertips.

Our moms who have Ds children are passionate about our kids. We are their voices. At any given time, I am praying for one, sometimes many of our children who are sick, who are having procedures done, for parents who are struggling, for those who need to know that someone else understands. The list goes on and on. I have seen some moms who have been harassed recently because of what they believe or for something that was said. It saddens me that our common ground gets a little cracked at times, but the rains come, the goodness flows and all is well until we are faced with our next crack. I do know that our parenting styles, our thoughts, our point of view, our beliefs, our actions and reactions are all different. I think we have to remember what brought us together in the first place and hold onto that. Our children are worth that and more. Again, I am so thankful for each of you that I have met along this journey.

31 for 21: Day 31!! I made it!

2010-10-31T23:02:00.000-04:00

I had my doubts as to whether or not I would be able to post all 31 days. Not because I didn't have feel that I had nothing to say, just because of time issues. I absolutely love talking about Down syndrome and Katie! I think of all the challenges she has overcome in her short lifetime and I knew that I would push on through this one simple challenge. No one would have been affected by this outcome if I hadn't completed the challenge.

I did it in honor of her and to honor her and her diagnosis. I did it to say that you inspire me Katie to live each day full of gratitude. I did it to help honor those who are not valued due to their diagnosis of Down syndrome. To bring awareness to those children who have no idea that they sit in an orphange because of the very same genetic condition my daughter has. To those in an orphanage that need to have someone to pick them up and love on them. When I see their faces, I see Katie. She has so many challenges ahead of her in her life, but she will never have to worry about being loved. That grin melts her momma's heart every time.

If I give her a bath at night, we have a little ritual we share after bath time. I dry her off standing on the counter in front of the mirror. She loves to look at herself. I hold her close and hug her while we are both looking at each other in the mirror. She brings me so much happiness just by grinning at me in that mirror! I did this challenge to bring awareness to those kids who have never had a bath, who are just wiped off with rags. To the kids who are eating mush every meal. My Katie and the kids here in the USA with Ds are privelaged even as we fight to make those around us aware here in the US. We are the voice of these children and for those who have no voice. I did it so that others will know that you don't have to feel an ounce of pity for me or my family. We are very happy thank you very much.

I did this because we all have something in our lives we are passionate about. Something that makes us get out of bed and gives us purpose. When I am sharing Katie, I am sharing the love of God. I did it to say that you are amazing Katie bug! I am lucky you are mine! I love you baby girl, always and forever!

31 for 21--Day 30--21 things about Katie and trick or treating

2010-10-30T23:44:00.000-04:00

1. Katie has an amazing smile! She lights up my world when she smiles at me.
2. She loves to look in the mirror at herself. She smiles and talks to herself when she does. My dad has a huge mirror on the floor in his extra room just for her to go and admire herself in.
3. She is a lover of pasta. Her favorite stuff comes right out of the box--Tuna Helper!
4. She loves to be outside and her favorite thing to do is swing.
5. Her favorite drinks are ice cold water and lemonade.
6. Her favorite books are the picture books with babies in them doing various activities.
7. She is a huge fan of the Signing Times DVD's. She really is not interested in any tv except for these dvds.
8. She hates to have her hair combed, but she lets me put it up everyday.
9. Bath times are so much fun. We say the word bath, she starts signing it and walks to the bathroom with a huge grin on her face.
10. She only crawled for a few weeks and then she started walking.
11. She has the same heart defect as her brother. They are both in the 15% of children who are able to keep their pulmonary valves when they had their surgeries.
12. She loves to eat a bowl of ice cream every day.
13. We have to hide her medicine in her food so that she will take it.
14. She has some really wide feet and shoes are hard to find that will fit her properly.
15. She hasn't attached herself to any toys yet. (dolls, stuffed animals, etc)
16. She loves to listen to music.
17. She never gets tired of playing patty cake.
18. She loves to have someone read a book to her.
19. Her first two word phrase is "go, bye-bye".
20. She loves to watch us talk to her and sign to her at the same time.
21. She cries if daddy laughs too loud.

We had a nice time tonight trick or treating. Katie was a cutie patootie in her outfit! I will post pictures of that in the nice few days. She got to ride in high style around the neighborhood. I always enjoyed getting dressed up as a kid and trick or treating. I remember the plastic masks you wore on your face held together by plastic band in the back. You had two eye slits and a slit where your nose and mouth were. Not the most comfortable thing to wear. You carried around a pillowcase or a brown grocery bag to get your candy in and boy did we get tons of it! I would come home and dump all my candy on the living room floor and sort it out into brands. I use to leave a big bowl of candy on the front porch since we are usually never home on Halloween night, but I stopped because I felt like one kid would come along and dump the whole bowl in their bag. I like the decorations of the houses that get all into it. I took some pictures of some decorations too that I will have to share also. I know we have gotten into alternatives for trick or treating now such as fall festivals and trunk or treating, but I don't see anything wrong with trick or treating. Growing up it was just a night of dressing up, going out with your friends and getting free candy. A fun night for a kid!

We had a get together with our family also. I am calling it the Happy Halloweenie Party as we had hot dogs, chili, slaw and plenty of other food fitting for a get together. Blake went to the trunk or treat at church with his "girl"friends family. Usually we do a trunk, but we didn't this year as I had already committed to having this get together and the trunk or treat was in the afternoon this time. We watched the Florida/Georgia game together too. (Only a few Florida fans in house, so we had to watch the Dawgs lose another one to their rivals!) We have had another big day and I am ready to call it a night. Another early morning awaits. I hope everyone has a safe and Happy Halloween!

Day 29 of 31 for 21: W is for weary, no not really, W is for wishes and let's skip x,y, and z!

2010-10-29T22:49:00.000-04:00

I figured if I pulled that I'm tired bs again you guys might start calling my bluff on it! I keep wanting to call it a night, but I will press on.

So last night, I didn't get to finish my wishes post. They have the Wishes finale at Disney World several times a week after the parade at night. This show has been going on for several years. I can't remember when they changed the finale to the Wishes show, but man, the few times I have seen it--I am speechless. I literally stand in awe and just feel like a kid again. The first time I saw the show I got extremely teary eyed and it has been that way ever since. I stand there and remember how magical I always felt when I entered Disney World. As I have grown up, the magic for me has never gone away. Sure, I see the trash cans now, the cranky kids, the rude guests, the massive crowds, among other things. I can remember my first ride on Space Mountain, the teacups making my dad sick, the trip when we forgot to pack our underwear, just so many memories being made there. So Disney is a fantasy. The best kind of fantasy. Of course my ultimate wish is a week-long trip down to the parks staying on site in a deluxe resort with the best upgrades possible and then when I was done there, hop onto a Disney cruise ship for another week! Too much syrupy goodness for you?

Okay, so we all have wishes (those would be our wants) and we all have needs. My wishes vary from supersized dreams to simple requests. My simple wish is to sleep in. If we took that thought a bit further it would be to sleep in and then wake up to breakfast in bed. Of course the bed I slept in had freshly laundered sheets when I slipped into it, and I would awaken to the smell of muffins, fresh fruit, grits with cheese, eggs and bacon. This would lead into a day of lounging around in my pj's reading a book and watching a movie or two. A more elaborate wish would be to have a house with double the square footage and a housekeeper. But those are material wishes. I know I have way too many of those types of wishes in the storage of my mind, but you know that is not where I am going with this post.

My wishes for Katie and Blake....wow, where do I start? I think that I am no different than most parents when I say that I wish so much for my children. I want them to stay healthy. I want them to be kind, thoughtful children and adults. I want them to care about others and love with all their heart. My wish is for them to be productive citizens in their communities. I want them to treat people with the respect they deserve and get that same respect if it is so deserving to them. I want them to love their country, love their God, love their family and friends with abandon. Those are just some of the things I want for them.

We could go deeper with other wishes of what I want such as the eradication of poverty worldwide, no child abuse, no wars, no crimes, that we didn't have such things as orphans, that every person knows true love at least once, this list could go on and on. Of course this must be what heaven is like. There could be no other perfect place except for there. I wish I knew what the reasoning is for all of the suffering here on this Earth. I certainly am asking the big man on campus this when I get there.

Keeping it simple, my wish for Katie would be that she is fully accepted just as she is. That we stop making fun of those who don't match our definition of what is perfect in their eyes. My wish is that we won't have to fight for the right to have them included in normal activities. My wish is that her voice and opinion will matter someday, that she is valued as a person just because she is one. I think we are making progress. As they say at Disney, a dream is a wish that your heart makes.....

Day 28--31 for 21: Wishes and Warriors

2010-10-28T23:45:00.000-04:00

Congratulations to Reece's Rainbow warrior Andrea Roberts for being named People's Hero of the Year! Wow! What an accomplishment! She is the founder of Reece's Rainbow and is a huge advocate for adoption. Children's lives are forever changed when they are shown that they are wanted and loved. I have met some amazing moms through facebook and even one of our own locally who have opened their hearts and adopted a special needs child. Now those are some moms to talk about! What Andrea has done is opened up a world that I may never have been a part of through her advocating for these children in Eastern Europe and other countries. Adoption has crossed my mind more than once thanks to this website. I have prayed and cried for these children. I look at these children and I want them all to be mine. It breaks my heart to know that there are children even here in my town who are unloved. These children in her ministry make my heart hurt even more when I think about no one being there to wipe their tears away or to cuddle them for months and years on end. No one to look them in the eyes and say I love you and you are my world. No one to rock them to sleep when they are sick. No one to tickle them and make them giggle in fits. No one to sing to them. This is a reality folks. It is happening every minute of every day here in this world. Would you please consider checking out the link above if you feel led. They do a Christmas angel fund every year and these children need money put into their grant funds to help them find a forever family. If you think your one dollar or five dollars won't make a difference, you would be wrong. If you have a group you work with, you could all go in together and make a group donation. If money is a problem, commit to being one of these sweet angels' prayer warrior. That is something you could freely give that would be an incredible benefit for them.

Anyway, I just wanted to say congratulations again to a remarkable woman. Your work matters and you are making a difference Andrea. Thank you for opening your heart so freely and sharing these beautiful children with us. God's love shines through you. Look for her story to run in People magazine soon. (She was featured earlier this year and was nominated to be a finalist.)

As for the wishes in my title, well I wish I had more time to get this post written. I find myself writing these post close to midnight every.single.night! I have to get to sleep so that I can function in the morning--I am definitely not a morning person. GRRR! So, this post will have to be continued tomorrow. Until then.....remember to be a blessing to someone...maybe even one of the little angels at Reece's Rainbow.

31 for 21: Day 27--V is for very close to the finish and voice

2010-10-27T23:13:00.000-04:00

I keep thinking that I am not going to make this challenge, that I am just going to skip one day. Then I realize that I want to stay committed to seeing it through until the end. The end is in site though and I can see me doing the victory dance.

Have you ever gotten tired of talking, of using your voice for long periods of time? I know sometimes I can talk so much in a certain period of time that the sound of my voice can make me ill. I love using my voice to talk about Ds though and I never tire of talking with others about my daughter and her diagnosis. I have come to realize that I am passionate about Down syndrome and everything it stands for.

Katie is verbal, but not the talking in sentences kind of verbal. She will say words like mama, dada, dog, eat, book, bath, and a few others. She works with speech therapy once a week at this point. She loves to look at picture books and study the pictures. We know that picture therapy is a very good way for her to communicate with us. The books that she loves would be considered infant books. They have a picture on the page and one word. She will let us read other books to her with a story, but they do not hold her interest like the picture books do. Her voice is beautiful when she does speak to us. I do wonder how her speech will be as she gets older. Will people be able to understand her? Will she be able to voice her thoughts in a timely manner? Right now Katie will sometimes say bye to someone but it might be after they have walked out the door, not when they are in the processing of going out the door. We will enourage her to say bye, but her process is delayed in actually getting that thought out. We know that her voice also comes through in her hands. Signing has played a big part of our lives in this last year and I continue to be encouraged to learn and use it as a means of communicating with Katie. Her little hands are full of life. It doesn't help her occupational therapist any at this point, since we are trying to work on fine motor skills. Katie wants to use her hands for everything but her fine motor skills. I am Katie's voice right now and for however long she needs me to be.

Day 26: 31 for 21----Unworthy

2010-10-26T22:53:00.000-04:00

As we are winding down the 31 for 21 challenge this week, I wondered what I would blog about using the letter u. (Just decided to do the alphabet to make it easier to find stuff to talk about.)

Do you know the stigma that still surrounds our children? Do you know that some people still find our children unworthy of life? Do you know that some people see our children as having no value in society? How can that be? Have they ever really opened their eyes as to what this world is made of?

I know that I have talked about how fortunate our children are to be born here in the United States. If they are put up for adoption, they have parents waiting to take them home to love on them. This isn't the case in many other nations, where they are put in orphanages to live out a bleak, miserable, lonely life. No, this isn't an exaggeration. There is so much stigma surrounding their diagnosis, that families do not take these children home. They are seen as not worthy of a normal life. In Eastern Europe they are transferred to a mental institution at age 5 and if they live to be 18, they are then put out on the street. Literally put out on the street. How can this be? I don't know what the next 18 years of my Katie's life will bring, but I know that if I am not able to provide for her, she wouldn't be put out on the street to fend for herself. Yes, someday she may be able to live unassisted, maybe in an apartment that we have attached to our house, maybe in a group home, maybe with other family, who knows. But I have no doubt that she will be cared for. That she is worthy to be here on this Earth.

I can't imagine that someones heart would be so cold as to not being able to accept someone that is slower mentally than they are. How many times have we heard that if you know early enough in your pregnancy that your baby has Ds, then you can abort? People say to me, I don't know how you do it, it takes someone special to raise a special needs child, etc. What else would I do? First, all I have to do is love my child. The rest will work itself out. I feel that sometimes I am not worthy of being trusted with such a child. Are any of us more worthy than the other? No, we all breathe the same air, we all need water to survive, we all feel the same types of emotions, we would all bleed if cut, we are all more alike than different. So why does one person act like they are better than another? "If you judge people, you have no time to love them." Quote from Mother Teresa. She loved the "least of these". She cared for those who society had deemed unworthy. Wouldn't this world be a kinder, gentler place if we could all find the worth in every life born. My daughter's life is worth every breath I take and every breath she takes. My hope is that in my lifetime we will see the changing of how other countries view their children with Ds. That they will be changed in their hearts and will see all the value of their child's life. I don't think that is too big of a dream!

31 for 21: Day 25--Trust, Truths, Time

2010-10-25T22:41:00.001-04:00

Love all, trust a few, do wrong to none. ~William Shakespeare
I trust everyone. I just don't trust the devil inside them. ~Troy Kennedy-Martin, The Italian Job

Okay, now this is a quote I love! How I love to be gullible! I feel that sometimes I am too trusting with others. I like to believe in the good of people. I like to think that we are all living life to the best of our abilities. My trust in one person has never wavered throughout the years. Yes, my trust in God. He has never let me down. He always stays faithful in my corner, loving me, forgiving me, accepting me just as I am. I never have to be anyone but me with him. I can't say that about anyone else, not even about myself. When we trust others, we place ourselves in a vulnerable position. We believe that the other person won't let us down and we become disappointed, angry, sad, etc when they do.

The definition of trust is defined as assured reliance on the character, ability, strength, or truth of something or someone. When Katie looks at me, I feel as if I can see her soul. She is so trusting in me. She believes in me. Sometimes I feel like I do let her down. Like I am not here enough. That I am not doing enough. I don't want to disappoint her. She already has so many obstacles that she has/will overcome in her lifetime. She is trusting in me to be that person that will be her strenght through her life. The truth is, I love her with all my being. The truth is I am doing the best I can. The truth is she will be the last person I will ever want to disappoint. The truth is her obstacles that she has/will overcome will be done with me by her side. The truth is long before anyone else will believe in her, she already had my faith and trust. I trusted the Lord to give me a beautiful child. He did. I trusted him to remain perfect in his reasonings of bringing her into my life. I see his perfection in her. I trust that whatever she deals with in this life, she will never deal with them alone. I trust that if she can do nothing more than love, than that is enough for me. I trust that his gift to me is one that I will continue to unwrap and savor for all of my life.

Time is standing still for no one. I told someone today that I love Fridays, but I live for Mondays too. This person didn't know me. It was just idle chit chat. But I meant what I said. Live your life for today. Yes, I believe in dreaming and planning for tomorrow, but I know that if you are always waiting for that next moment in your life, you will miss the ones right in front of you. It is hard to believe that 2 1/2 years has passed since this little sweetheart entered our lives. I keep asking where has the time gone. I am getting ready to hit a milestone birthday soon. Where has the time gone? I can still remember 15 like it was yesterday. Do I live my life to the fullest everyday? No, I can do better. There is a lot of joy in all the little things everyday. A simple hug, a belly laugh, the person letting me pull out in front of them, the thank yous, the sweet kisses from the tender lips of my little one, the first breath when I wake up and I thank God that I have another day to enjoy with those who bless my life. The truth is we are never promised the next minute. It can all be over in the blink of an eye. Take the time to make someone's day brighter by giving a piece of you to them. So many people are lonely, confused, hurting, in need of a small moment to believe in all the good of mankind. Be that moment. Be the time that you can't get back and trust that it is all worth it.

Time is the most undefinable yet paradoxical of things; the past is gone, the future is not come, and the present becomes the past even while we attempt to define it, and, like the flash of lightning, at once exists and expires. ~Charles Caleb Colton

Day 24 of 31 for 21: Signing and Seizures

2010-10-24T23:01:00.003-04:00

We are big fans of Signing Times. Children with Down syndrome can have some problems with their hearing. Usually you will hear of parents talking about the ear drum being extremely small. We have been told that Katie's are some of the smallest they have seen. Katie did have tubes put in this summer after waiting for the last two years for her to pass her hearing test in both ears. Believe it or not,she has never had the first ear infection, before or after the tubes. It was our hope that the tubes would clear the ear canal of fluid which distorts her sound. She also had an ABR while sedated to really assess her hearing problems. She passed the hearing test, so we know she can hear for sure now.

Speech is a big challenge for our children also. I started letting Katie watch Signing Times after I heard one good review after another from other people. She loves it! I do believe it has helped her in being able to say what she cannot verbally. Her speech is still random, meaning I can't ask Katie to say momma and expect her to repeat it back to me. I know she understands though. Just tonight after her bath, she went up to a towel hanging in the bathroom and tried to say the word butterfly--the towel was covered with butterflies. She said the first part of the word clearly, but she couldn't get out the rest of the syllables. So what did she do, she signed it! So, we know that they are teaching her. She really cannot get enough of the videos. They are her favorite thing to watch. Kaitlyn is fascinated with us signing too. I will sing the songs and sign to her and she watches me every time. I love when I sing and sign and she will do it too. I have learned several hundred signs just by watching these videos with her. My goal is to get every one that has been published. Would I have ever thought that I would be able to learn it? I wondered, but once I started watching, I saw how easy it was. I haven't kept track of all the signs that I have seen her do, but she does know a lot of them. I know this is helping her right now as she is nonverbal for the most part.

The shows are around 30 minutes. Each episode is themed. The instructor, Rachel Coleman, is very easy to follow as are the other two stars of the show, Alex (her nephew) and Leah (her daughter, who is deaf and the inspiration for the show). They break down how to sign each word and then she puts the words together to form a song. They show each sign in pictures and have other children also signing the word. If you pay attention, other signs are shown which aren't the highlighted signs for the videos, but they help to expand your signing vocabulary. The website linked above is to their store. They also sell flashcards (which Katie loves), board books, and CD's among other things. You can also find their stuff at places like Amazon, Best Buy, Ebay, etc. I like her website because you can be put on their mailing list for sign of the week, updates on her blog and specials they run. They just announced that PBS will start showing their shows again, which is awesome. I hope that they will continue to put out DVD's for many years to come.

My mom and dad even sign and my dad said he was too old to be taught! So if you are looking for a great way to communicate with your child, studies have shown that sign language is a great way to do that. I think you would be very pleased if you started this with them. Happy Signing!

If you followed my carepages, then you know that Katie also was diagnosed with Infantile Spasms at 8 months of age. We got the multiple, daily seizures under control 4 months later with meds. She has been seizure free since then. We thought that she was having them again at the end of spring this year. We bumped up her meds and went for an EEG. The EEG was clear. Her eye doctor saw her a week after the EEG and said that her squinting one eye and turning her head was an eye issue. He was very sure of it. We then began noticing that she would stop doing it if we called her name and she turned her head or that she would start doing it if she was trying to focus. We have had a lot of trouble with her taking her seizure medicine this summer, but we have finally figured out that giving it to her first thing in the morning when she is hungry works best. We see the neurologist this week for a checkup. I think she is doing really well in that area. I don't know if she will have to be scheduled for any EEG's or MRI's in the upcoming months, but I know we have talked about getting an MRI sometime soon. Of all the things I have dealt with through this journey, the seizures were the hardest thing for me to cope with. I am so thankful that she responded so well to the first medication he put her on and that she is still pushing forward developmentally, mentally and physically.