Sunday, October 31, 2010

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

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!

Saturday, October 30, 2010

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

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!

Friday, October 29, 2010

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!

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, 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..... 

Thursday, October 28, 2010

Day 28--31 for 21: Wishes and Warriors

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.

Wednesday, October 27, 2010

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

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. 

Tuesday, October 26, 2010

Day 26: 31 for 21----Unworthy

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!

Monday, October 25, 2010

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

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

Sunday, October 24, 2010

Day 24 of 31 for 21: Signing and Seizures

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. 

Day 23: 31 for 21--Reminiscing and the "R" word

Let's start with the hot topic button shall we?  The use of the word retard.  I think every person with a Down syndrome child has an opinion on this word.  Let me start with my background of this word as it relates to me.  Yes, I was one of those who threw this word around very loosely back in the day.  "Oh, you're such a retard", "That's so retarded" and other variations of this statement.  I never said it regarding anyone with a mental handicap.  I never thought it about anyone with a mental handicap.  To me, it was just a slang term to be used to describe something dumb.  I had never had any personal interaction with someone who had Down syndrome until Katie.  I didn't know anything about Ds until Katie came along.

I have a cousin who is mentally handicapped.  She would be considered profound by some.  What she has done has exceeded any expectations of what anyone thought possible for her.  She had several champions in her corner  who battled for her.   That is a story for another time though.   I look at my cousin with so much respect now, never really understanding what she dealt with until I too was thrown an unexpected turn in my life.  I never called my cousin retarded though.  She was always mentally handicapped to me. 

Facebook, blogs and message boards were not a part of my life when K was born.  Facebook had just started taking off sometime that same year she was born.  So imagine my surprise when I found that the "r" word was a subject of great debate among many.  There are some who fiercely object to it, some who could care less about the word, and some who are in between.  At first I was one of those who didn't care.  As long as you weren't saying it about my Katie, why should it bother me?  I knew people weren't saying it to reference her.  Then, I started really hearing the word.  Kind of like the white elephant in the room type thing.  Someone would say the word and then everyone would look at me for my reaction.  It was like a spotlight was on me.  Now I here the word and I cringe.  I don't say it and am just now saying to people who matter to me to please stop saying it.  Someone very dear to my heart use to throw the word around very casually.  I asked this person to stop.  I have heard it slip out of this person's mouth a few times since then.  I just say please use a different word.  I don't get upset and I don't hate this person because I know this person is genuinely trying.  Some people would argue with me and say that they aren't trying hard enough.  We are making a difference when we have someone become aware of what they are saying.  One less time it is used is one less time I have to wonder if someone is going to call my daughter a retard.  Will it ever happen?  I'm not betting against it, but I am hopeful that we can eliminate this word someday.  We have a good start and I am pleased that President Obama recently signed a bill into law.  Rosa's Law was just passed which eliminates the word mental retardation and mentally retarded from federal health, education and labor policies.

Kids use this word so loosely.  Do you know that kids are more likely to laugh than they are to feel sorry or bad about someone being picked on?  How sad is that?  Thankfully, we do have people who are paving the way for a better tomorrow for my daughter and all those who share her special gene.  Even MTV, who doesn't meet a lot of parental approval, is bleeping out the word on shows.  So if we can get someone as huge as MTV to join in this cause, how about my friends and family who care about me and Katie stop using this word?  To those of you who have stopped, thank you.  To those of you haven't, let me challenge you to find a different word to express your thoughts.

I remember very early on after I had Katie, an older person, late 60's, used the word mongoloid to describe Kaitlyn.  To say that my eyeballs didn't pop out of my head is an understatement.  I politely told this person that that term was extremely outdated and derogatory.  The person apologized to me and I accepted it.  I do know that there are people who don't know that the "r" word is hurtful and demeaning.  Let me tell you a story.  I started school post integration.  I didn't know the word colored was derogatory.  I used it in a story I was telling.  I highly offended the person when I said it.  I literally had no idea what the word meant.  I was raised to love everyone and it didn't matter what color your skin was.  It was only after it was brought to my attention that the word was inappropriate that I never said it again.  That is how change starts.  One person at the time.  I don't believe in wiping you off the face of the Earth if you do say it.  I won't de-friend you, but I will respect you a who lot less if you keep saying it if you know how I feel about the subject.  You can be the change.  Won't you start today?

I met with a few Ds moms today.  I love being able to share our lives with those who do understand everything that we experience as members of the 21 club.  Over on the babycenter message board in the Ds group, there was a question posed to the members about how honest we really were to others when we first found out the diagnosis.  I have loved reading the responses.  I haven't posted yet, but I will.  So it leads me to do a small amount of reminiscing and reflecting on that period of my life.  To say it was all overwhelming is an understatement. 

I was all alone when I was told.  Kiley had just went home after going to the nursery to see why Kaitlyn hadn't been brought back to us.  I was getting ready to take a shower and tuck in for a day of enjoying Easter and celebrating what that meant.  I had Kaitlyn the day before.  That night Kiley was at the nursery when he saw two words written on a paper next to K--heart murmur.  During the night she wouldn't take the bottle.  We kept thinking it was because of her heart.  She was scheduled for an echo that morning, so when they didn't bring her back to us, I felt it was because of her heart and what they had found. We never suspected Ds even when we were told that the AFP level was low back in the 4th month of pregnancy and my quad screen was elevated.  Everything after that point was normal.  We declined ammnio after we discussed it with our high risk OB.  So I never gave Ds another thought.  That morning the doctor on call came in with a nurse and said the words that would change my life.  I think your daughter has Down syndrome and she has Tetralogy of Fallot.  I just couldn't believe what she was saying.  I was asked  if I had heard what was being said.  I responded very calmly, yes, why do you suspect Ds?  I was told about her floppiness, the facial features, etc.  They were shipping her off to a more specialized hospital.  My next sentence was I need to get out of here to go with her, can you make that happen?  They left me and then I called my husband who lost it when he heard.  Next was my parents and so on.  I had many people crying for me.  I very calmly got ready and asked the staff to take me to the nursery where I would stay until the ambulance came to transport her.  People who were learning of the diagnosis came up to see us and pray for us.  When K left for the hospital, I was discharged and ran home and packed a suitcase.  About halfway down to Gainesville after many calls to friends and family, I spoke to my sister in law and all I said was K has Ds and the tears came then.  I cried silently in the car the rest of the way holding Kiley's hand and praying to God.  Once we got to Shands, we were taken to the NICU where we sat at K's side until after midnight.  I didn't have time to process any of it really.  We were too busy talking to doctor's and nurses.  I can close my eyes and I am back there, remembering.  I can see the outfit I wore that day, the hard rocking chair I sat in, the location of the NICU bay we were in.  I remember walking into Shands thinking about how everyone was dressed in their Sunday best and just celebrating the day and wondering why we couldn't be doing the same.

I accepted the diagnosis before it was even confirmed.  I was so worried that K wasn't going to live and I just prayed that God would let her live.  I had a few really bad days, but overall it was not a time of deep mourning for me.  Yes, I did grieve for what I didn't have, but I didn't dwell on it.  Those who know me know that I am always smiling and for the most part a positive person.  That didn't change because of a diagnosis.  I didn't have a break with reality and I wasn't in denial about it.  I just accepted it and decided that I needed to get educated in a hurry.  I was thankful that I didn't get the diagnosis prenatally.  I had the most wonderful, beautiful, enjoyable pregnancy.  Really, all I wanted was to find out everything I could about Ds those first few weeks.  The worse day that that I had came after we had to switch doctors  (that's a teaching hospital for you).  I felt that all the progress we had made with K was going to go down the toilet when the new head doctor came in and decided to switch up some stuff.  I started crying and I did not stop the entire day.  Loud, boo hoo sobs.  I stayed at K's bedside the entire time and am so grateful for the nurse who pulled me through that day just by being there and listening to me.  That was probably the darkest day I ever experienced.  I just wanted the Ds to go away and for all her health issues to disappear.  I wanted to be home in my bed with my baby lying next to me.  I didn't want to go up to the NICU and have to ask permission to go into a locked unit to see my baby.  I didn't want to sit out in the open in front of everyone and whisper sweet nothings with no privacy whatsoever.  I wanted my recliner where I could sit in my tattered nightgown and hold my baby without monitors beeping every five minutes.  I wanted the normal, run of the mill birth experience.  Why couldn't I just get a side of normal with that Ds diagnosis?  Why did I have to be away from my home, away from my comfy bed where my butt could heal (literally and figuratively)?  Why did I have to sit in a rocking chair with a bottom as hard as a  piece of cement?  (well it felt that way after just giving birth)  Why, Why, Why???  It seemed like the questions would never stop coming.

I just accepted what the diagnosis was and that was that.  I knew nothing was going to change it and I had a choice in how I would handle it.  That doesn't mean that even today I don't have a moment where I  am sad because of all the hurdles she has to overcome.  All of it is a part of this journey called motherhood.  Every emotion that I felt was allowed and is still allowed.  You aren't a bad mom if you cried everyday for the first 6 months.  Many moms experience postpartum depression.  I am sure the numbers are pretty high for special needs moms.  Why?  Maybe because we think that we have to live up to a stereotype of what a perfect mom should be.  I remember watching Leave it to Beaver as a young girl.  I wanted to be in that family and I wanted to be that mom when I grew up.  No one could hold a candle to June Cleaver.  We women are harder on ourselves than anyone else could possibly be.  My life is far from the life I envisioned as a child and young adult, but I wouldn't want it any other way.   I thank those who have joined me in this journey, who have shared all the ups and downs with me, who continue to be someone I can call on.  I am who I am because of these experiences I have lived through and  I am right where God wants me to be.

Friday, October 22, 2010

31 for 21 Day 22: R is for really tired and need rest!

Cheat post!  Again!!  I don't think I ever run out of things to talk about.  In fact, this post which will be done tomorrow has to do with a hot button topic for special needs and some reminiscing about Katie's birth then and now.  So check back in tomorrow!  Time for bed.

Thursday, October 21, 2010

31 for 21: Day 21--Revisiting the P's again--Purpose and Q is for quiet time

So, I started thinking about what my purpose in life is/has been.  (yes, I do think sometimes!)  I do feel we were created from God and for his purpose.  I am not alone in that thought.  Over 90 percent of Americans believe in a higher power.  Worldwide, the numbers are in the high 80 percent level.  So if we have that many people believing, then I would think many of you would understand where I am coming from when I ask what is the purpose of my life?   I read the Purpose Driven Life by Rick Warren a few years back and we did a Purpose Driven Church with our church a few years back too.  It was a very interesting read and it tells us we were created for God's purpose and that this life is only a temporary home.  Was I created to take care of a special needs child?  Am I here to help advocate and educate for these children?  Am I here to provide support for new moms and to develop friendships with moms who share our common bond?  Am I here to just give the best care and love to my sweet girl?  Can I show God's love through my child?  Do I have more than one purpose in life and more than one way to carry out that purpose?  The answer to all the above is yes.  I am learning that I have new purposes that are creeping into my thoughts and maybe some that I am resisting from God.  Some purposes are not clear to me and some are crystal clear.  

So I am trying to be quiet.  Trying to really listen to what he is telling me.  There are people who never know what being quiet is.  (I know, I know, I am one of those people always talking!)  I like to have quiet time every day.  I usually spend it doing two things--praying and reading.  I am a firm believer in down time.  I need it.  You need it. We all need it.  Some people need background noise on all the time---the tv, the radio, who knows what else.  When everyone goes to bed here, that is when I turn off the tv and allow the stillness of the day to make itself known.  I already posted about our society being in a hurry all the time, but we are also a society who feels the need to be connected all the time too.  What we would do if we turned off all the cell phones, the computers, the radios, etc?   Would you take the time to connect more with yourself and with God? I love the computer and the internet.  It is amazing what you can do with it.  I like to watch movies and listen to music.  I want all the latest electronic gadgets too.  But I know that these things do not fuel my life.  They don't keep me happy although they do bring me happiness.  But there is a time and a place for all of that and a time for quietness.  When things get quiet, does your brain go into overdrive?  Can you not keep one thought separated from the other?  Do you allow yourself time to mediate and reflect on all the things you are blessed with?  Do you remember that you have friends and family who love you?  That you live in a country where your rights are upheld?  That you go to bed not hungry or cold?  That you are protected by men and women who are giving their life for you?  That you are allowed to worship any way you want?  That your child has access to medical care?  That we have drinking water that we don't have to walk miles to get?  On and on the list could go.  Two thirds of the world we live in is underdeveloped.  They have no quick access to food, water, medical care.  There is so much we take for granted.  When you start finding your mind race, give yourself some quiet time to reflect on all that you do have.  As Martha Stewart would say---Quiet time--its a good thing.  Talk with God about your purposes in life.  Allow the quiet time to be a regular part of your day.  You may find it to be one of the best times of the day also.

Wednesday, October 20, 2010

Day 20: 31 for 21--Revisiting the P',procrastination,prayers,and patience

No photographs yet on the blog as I haven't explored this blogging stuff enough yet.   That is why a two year old picture is the only picture up on the blog right now.  I put that up when I thought I was going to start this blog way back in the day.   I am sure it is easy to do, but what I really want to do is hire someone to design my blog for me.  I am sure that I could come up with something on my own, but I don't feel I have enough time to do that at this moment.  So, no pictures of Katie and the rest of us for now.  I am not the greatest picture taker either.  I chop heads off, miss the really great shots, don't get in close enough to the details and just generally suck at taking pictures.  There are some really happening blogs out there.  The writing and photography blow me away.  My dream is to someday have a Canon Digital Rebel or a Nikon D90 or some crazy contraption like that.  I think it would make my crappy pictures look better in some sort of way. Either way, the photography is coming.

Oh, and another thing....I like to procrastinate too much!  I put off starting this blog for the past year or so.  I kept saying I would get started on it and it would never happen.  I hate the feeling of putting off something at the last minute, but it seems to run in tandem for Kiley and I.  We have good intentions, but we are way late on the delivery sometimes?  I am one of those people who will wait until the last minute to pack and then be in a panic because I have wasted good time messing around and not doing it until I absolutely have to.  Now I am not a procrastinator in all things, but I have very strong tendencies to go in that direction.  Let me not procrastinate too long about getting this blog set up the way I want and getting pictures posted.....we shall see how things look in 6 months.

I do a lot of talking to different people.  Today I had two different instances where I wanted to cry about something that occurred.  I have always found that praying for others keeps my perspective of what is truly wonderful in my life at the forefront of my thoughts.  Does that make any sense?  I can sit and think about things that make me upset or worried, but it is when I start turning my mind to what others need, it is then that I am humbled by how small my problems seem.  I keep a prayer book.  I use to be much better at writing all my requests in it.  I have slacked off so much this past year and a half.  Journaling has always been something I love to do.  I have done it since I was a young teenager.  It is a very rare time that I have ever gone back and read something I have written.  Someday I may thumb through some journals and read some entries.  I can't make myself let go of the ones from the last 15 years or so.  I know that memories will be with me in my head, but maybe someday my children would like to read my innermost thoughts and see their mom in a totally different way.  I don't know.  I just know that my prayer book has been mostly empty as of late.  When  I say I am praying for someone, I don't just say it or write it down and never fulfill that promise.  Someone who asks for prayers is believing that you are going to do what you say. If you need to be lifted in prayer, you let me know.  I would be honored to pray for you.

How many times have you felt your patience wearing thin in any given day?  Some days it is a battle to stay pleasant and positive.  I think that I have always been a patient person, but even more so since Katie arrived.  I see her little, chubby fingers working so hard to pick up something small, or how she wants to say a word and her mouth is open and no sound is coming out.  I am patient.  When we get behind someone who is slow in the checkout line or in the left lane of traffic, how patient are we?  When someone is stuttering because of a stroke, do we let them talk or do we finish their sentence for them?  When someone is trying to learn something new, do you let out a huge sigh or scream in your head because they are impeding your progress?  How many times do we lose our patience even if its for a split second?  I look at Katie and I am able to slow down and hang out at her pace.  I see things that I never would have bothered looking at twice when I see them through her eyes.  I drove up to my parents today to pick her up.  My dad and Katie were out front looking at my moms flowers.  Katie had her hands clasped behind her back peering into the flowers.  My dad was letting her take all the time in the world that she wanted to look at them.  How many times have I walked by those flowers in the last 6 months and never paid any attention to them?  Today I saw those flowers because I was patient, because I allowed myself a moment to look through the eyes of my child, to really see what she was seeing.  We are a world on the go.  Take the time to count to 3 or 30 the next time you feel your patience wearing thin.  Your eyes may see more than they ever imagined.   

Tuesday, October 19, 2010

31 for 21: Day 19--P is for putting this post off until tomorrow

Too many things to do and not enough time to do it! I am exhausted and will have to post tomorrow. I had a horrible dream last night and couldn't get back to sleep last night, so it left with me with a deficit on the sleep side. I am one of those people who needs her 7-8+ hours of sleep a night. Without it, I am a little on the cranky side.

So tomorrow, I will take on the p's--prayers, patience, procrastination, photographs, and whatever else I can come up with it!

Monday, October 18, 2010

31 for 21:Day 18 --Opportunities

Seize every opportunity along the way, for how sad it would be if the road you chose became the road not taken.  ~Robert Brault

What do you do when an opportunity presents itself?  Do you even recognize it?  Do you jump head first into it or do you step in toe by toe?  Do you look at it as a once in a lifetime chance or do you think it is something that will present itself again to you?  Do you ponder over all the options or never give it a second thought and let what happens, happen?  If you had an opportunity to redo some of the things in your life, would you redo them?  I know there are certain things I would love to get a do over if presented to me.  I am not going to sit around waiting to see if those things would present itself to me though.  I don't live my life dwelling on past regrets, my life before me is beautiful.  It is one I enjoy and maybe I don't savor it as often as I should. 

I read a post the other day about someone wishing every day that she could change the fact about her child having Ds.  She is still early in her journey, and for many there are quite the range of emotions that go along with a new diagnosis.  I don't devalue her feelings one bit.  I do hope and pray that a year from now she will think differently and just take this opportunity to live her life to the fullest with her child by her side living life large too. 

The Ds community has so many more opportunities available to us than ever before in our children's lifetimes.  I just read an article today in my paper about my educational opportunities for our children after high school.  That college is a reality for some of them in addition to other lifestyle choices that weren't readily available 20 years ago. 

I do not feel that every conversation I have with every person has to be (and it isn't) about Ds.  If the opportunity comes up where I can educate people, I take it if I feel it is appropriate.  I find everyone that I have talked to has been so receptive to hear what I have to say.  We don't have to come out with guns blazing saying listen to us or else.  We can make no better statement than allowing our children to fully be a part of our lives, to show them off just as proudly as we do our other children, to allow them to have the same experiences our other children have, to show that first and foremost they are loved just by simply being part of our family.  Those opportunities are called living life, right here and now. 

What opportunities are you missing out on right now?  Embrace the life you are given.  Find one positive thing to see in each day.  When you think you have it bad, remember there is always someone that needs more hope and love than we could ever imagine.  Do lose the opportunity to say I love you to someone or to just call someone and say hi, I'm thinking of you.  Those little opportunities can have big rewards, for you and those you interact with. 

Opportunities do not come with their values stamped upon them.  ~Maltbie BabcockEvery day is an opportunity to make a new happy ending.  ~Author Unknown


Sunday, October 17, 2010

Day 17: 31 for 21----Nice day spent with nice people

Today we had a chance to spend the day with our friends, the Zuidema's at their 3rd annual Buddy Walk.  What a nice time we had.  Her team is a great group of friends and family who really show their support for them, Chloe and Down syndrome awareness.  We all wore custom made shirts supporting Chloe's Buddies.  Very cute too!  When I start posting pictures here, I will have to post a picture of the shirt. 

It was a beautiful day in Inverness, Fl.  I got a little sunburned on my face and the 84 degree weather kept me drinking plenty of water.  I can't imagine doing these walks during the summer that is for sure.  The walk is held in a beautiful park on the lake.  The kids had a ball playing on the bounce house and slide and doing all the carnival type games to win prizes.  In addition to our family, mom went and so did two of my nieces.  Blake was gifted a really nice lithograph from a raffle ticket that Chloe's dad, John, won.  Thanks again for making Blake's day! 

We met the Zuidemas while we were at Shands during K's NICU stay after she was born.  We missed seeing them in the NICU by 4 days.  She had her heart surgery and was transferred out after that.  I remember when we got to the NICU that all the nurses and support staff kept mentioning that we needed to meet Chloe.  Well, we did meet them eventually.  Kiley and John met each other in the elevator!  They got to talking and we ended up spending one morning at the Ronald McDonald house sharing our stories.  I remember going up to meet Chloe in her room before we went home.  We kept up with each other over that first summer sending each other numerous emails.  We have had the chance to meet up the past two years for a NICU reunion at Shands and also for the last 2 Buddy Walks. 

My hope is that these two girls will be life long friends.  I can see them spending a week together during the summers when they are teenagers!  I hate that we live 3 hours from each other, but I am so glad that we had the chance to meet them during a very stressful time in our lives.  Chloe, John and Michelle were the first people we met who had a very real experience with Ds that we could relate to.  Our daughters do share Ds, but they are little girls first and foremost, who will share a lot more than that common bond.  Thank you Lord for bringing the Zuidema's into our lives.  We are so grateful for their friendship and love! 

Saturday, October 16, 2010

31 for 21:Day 16--Mistakes and Memories

God doesn't make mistakes!  I truly believe that.  K is just the way he wanted her.  That is all I have to say about that.

Memories--in the process of making some right now, so no time to post. 

Just call this cheat post number 2.  (I don't want to break my streak)  I will have to post some of my memory making photos for you all soon.  Stay tuned....

Celebrating Down syndrome awareness month with a great memory in the making tomorrow at our 2nd Buddy Walk with K's friend Chloe. Details to follow.

Friday, October 15, 2010

Day 15: 31 for 21 Leadership

Are you are born leader or one who was made to be a leader?  I find myself at a point in this journey with Down syndrome where I feel I am needing to step up and bring people together in our community.  Do I have what it takes to lead a support group?  I have been asking myself this question many times in the last month.  I have sought opinions from others.  I have debated the pros and cons of taking on a leadership role.  Someone, somewhere has stepped from the same place that I am at now.  I have always been content to sit on the sidelines and cheer.  I think about the undertaking it would require and would I be able to go the distance.  Would I make a difference?  Some people thrive in the leadership role.   Somehow I find myself using a different t word to describe  what I feel--terrified!  I want to help those who are coming behind me in helping them adjust to a world that many are not used to.  I want people to know they aren't alone.  I want a new mom to be able to pick up the phone when she needs to talk to someone who has been there and done that.  I want moms and dads with older children to help guide us into the future.  I know support groups are not for everyone, but I want there to be one for those who need it and want it.  Is this what I am called to do?  I am still trying to sort everything out, but I do know I have a passion for helping my daughter live her best life and maybe this is just another step along the way. 

Day 14: 31 for 21---Kids, kindness and kryptonite

Okay, so what does kryptonite have to do with Ds?  Hmm, I don't know...I just liked the word and I needed something that started with the letter k.  Then I got to thinking and yes, I could find an analogy that would go with that word.

My kid and others who share our special gene is the reason I am sharing her story.  I have had another person tell me recently about someone who is still having a hard time with their child's Ds diagnosis.  It takes time.  To those parents:  it will all work out in the end.  You child is a baby first over all things.  Love your child for just being part of your life.  That is what they need more than anything else at this point.  Our first year was full of so many different needs.  Needs that were more than just K's physical needs.  We had emotional and spiritual needs.  We had educational needs.  We had adjustment needs.  I found that they were all important, but they didn't compare to the need that my baby just needed to be loved on more. 

My baby isn't really a baby anymore, yet she is in so many ways.  She doesn't look like a baby.  She looks like a little girl now.  She is more alike than different from all the other kids her age.  No, all Down syndrome children are not the same.  They can share some of the same physical traits as other children with Ds, such as low setting ears, a single palmar crease, brush field spots on their eyes, and low muscle tone to name a few.  K looks like her brother, she looks like me and her dad.  There are so many different stereotypes out there about Ds.  No, she isn't always happy.  She has temper trantrums just like every other kid out there. 

Speaking of kids, they are a mixed bag of emotions just like we adults.  They can show great kindness and also show lots of meanness.  I have seen some great stories when it comes to our kiddos.  The football team that gives the kid with Ds the ball and lets him score and then both teams celebrate afterwards, the cheerleaders who started a special needs cheer group and they both go out to cheer together at games, the high schools that have started "buddy" clubs.  How awesome is that?  I want to believe that my daughter will be surrounded by kindness as she enters school, especially middle and high school.  I hope that we adults will have educated enough people that it hurts to make fun of people.  Of course, when the adults are making fun of the kids, then those same kids may follow that same path too. 

Kindness, when it happens and you are a witness to it, is a wonderful thing.  People want to be treated with respect.  Everyone wants to matter.  When was the last time you did something kind for someone else?  Kindness can come in a small package.  Holding the door for someone, letting the person at the checkout line who has 2 things to your 20 go ahead of you, complimenting someone on how they look, picking up the phone to say hello to an old friend, keeping your road rage contained to the thoughts in your head, on and on the list can go.  I am blessed that I see kindness all around me everyday.  I hope that you do too.  If not, share some of yours with those who don't have it. 

I keep telling Blake that it hurts to make fun of people.  I ask him how he would feel if someone made fun of his sister.  He is at that age where he can make a difference with his peers and educate them about his sister and her diagnosis.  He must of been listening because he had some friends over and  K made one of her squinty eye faces and the kids laughed.  They weren't laughing at her, just that she looked funny doing it, but Blake didn't realize that.  He made me proud.  He told them to quit making fun of her, she couldn't help it.  I loved that he defended her so quickly, so fiercely.  I  hope that what I am saying to him does make a difference in how he would treat others around him.  Only time will tell.

So how does kryptonite fit into my post tonight?  Well, first you have to know what it is.  If you have ever heard of anything to do with Superman, then you know that this is what can kill him.  Words and how we act can be full of kryptonite.  How many times have we said something and it just crushes the other person?  Has someone ever said something to you and it hurt so deeply that you wondered if the pain would ever leave?  Think of those people who repeatedly put others down, who laugh at someone because they don't look the way they do, who thrive on throwing the kryptonite around.  We can't control others, so people are free to think and say what they want, but we can speak up when there is an opportunity to educate someone.  The kryptonite in this world will always be present as long as we live, but lets do our part in breaking up as much of it as we can.  The kids today can be the kindness of tomorrow or the holders of kryptonite--let's pray that the kindness always wins out.  Superman wouldn't want it any other way!

Wednesday, October 13, 2010

Day 13:31 for 21--Joy throughout the Journey, but not tonight

 I have already mentioned  Reece's Rainbow in a few other posts last week.  Tonight my heart is heavy as I have learned that a sweet angel girl has earned her wings and has gone home to be with Jesus.  Anne Marie lived in an orphanage in Eastern Europe.  She had a heart defect. This could have been the cause of her death, but I don't know. My heart hurts so much for this little girl who didn't have anyone to love her and hold her during her lifetime.  I wonder if she ever experienced true joy in her short life.  Of course I am rejoicing now as she is truly at home where she is fully accepted just the way she is.  I know she is thankful to be up in the Heavens out of her crib forever!  Tonight she is being held and loved by so many who were waiting for her.  She is surrounded by a joy unlike any other.  God bless sweet Anne Marie. 

Matthew 25:40--I tell you the truth, whatever you did for one of the least of my brothers of mine, you did for me.  Sadly, so many in society, see the Kaitlyns' and  Anne Maries'  as the  least of these.  Their life has no value.   I simply cannot understand why we have casted aside those who need us the most.  We have so many warriors stepping up on behalf of the least of these, but it is not enough.  I think of where we were just 50 years ago concerning a different minority group.  How one person was brave enough to believe in changing the world.  One voice becomes ten, then a thousand, then ten thousand and so forth.  For the 5,000 babies born each year with Ds, that means that 45,000 are not born due to our 90% abortion rate here in the US.  People see our children as a burden to society, they see them as suffering from their Ds.  What did our children ever do to deserve these harsh judgements?  Why does someone feel the need to tell me how I am going to feel raising my child?  If I say that she is the light of my life, and that she brings me pure joy, believe me!  The definition of joy--intense and especially ecstatic or exultant happiness.  Another definition---A source or an object of pleasure.  A joyful life is a blessed life,  a truly happy life.  I am so thankful to be living a life full of joy.

Brandon Heath sings a song that I love.  The lyrics include this passage...

Give me your eyes for just one second
Give me your eyes so I can see
Everything that I've been missing
Give me your love for humanity
Give me your arms for the broken hearted
Ones that are far beyond my reach
Give me your heart for the ones forgotten
Give me your eyes so I can see

Lord, thank you for opening my heart and stretching it full of your love.  I won't forget the ones forgotten.  The ones who need to feel our love and your love in every way possible.  Lord, I ask that every one has the chance to feel joy in their lives at some point.  For those waiting to find the joy of forever families, keep them safe, wrap them in your arms and let them be touched by your love and grace.  To those of you who have no joy in your life, open your eyes and look again.  It is there for you to take.

Tuesday, October 12, 2010

31 for 21:Day 12-- Importance of educating others

Here I am again posting at the last minute~I know my mind has been screaming the importance of getting a good nights sleep to me for the past week.  Tomorrow night I will plan to have a little sleep over with my mind and body!  For now, more awareness coming your way....

I decided to start writing again because I do feel it is so important to spread awareness on behalf on my little one.  I am her voice.  Five thousand babies are born each year with Ds.  That is out of a total of over 4 million born each year in the United States alone.  No wonder I felt so alone when I first got the news.  If you think about it, that number is a needle in the haystack kind of number.  I went to my sons open house last year and my Katie is the one in 733 number.  Meaning one out of every 733 children born have Ds.  You may hear 1 in 700 or 1 in 800 too as the number of children born with Ds.  Will she go to school with anyone else who has Ds, especially someone her age?  I have 2 friends who have daughters who will go to the same school.  I wish my little girl was going to their school too!  Since Ds is such a minority group, we moms and dads have to let others know about our experiences raising a child with Ds.  It is so important to me to have other people see the absolute joy my daughter brings to my life.  I can't imagine her in this world any other way.  Someone once asked me if I have ever thought of what Kaitlyn would be like if she didn't have Ds.  I would be telling you a story if I said that I have never given it a thought before in the past.  But I think that is just natural for you to wonder what if.  I love her with all of my being and she wouldn't be Katie any other way.  I worry about her future.  I worry about her being left behind.  I worry about her being made fun of.  But I can't let those worries consume my thoughts.  And really, they are fleeting thoughts from time to time for me.  I don't obsess over them because none of those things will ever change her.  I will deal with those things as they occur.  

The Ds will never go away.  Her DNA makeup has 3 copies of  the 21st chromosome in every cell.  People have asked if the Ds is mild or severe.  Their delays can be mild or severe, but there is no such thing as mild Ds.  Some people have a different type of Ds, which is called mosaicism and another type which is called translocation.  95% of all Ds is the type Kaitlyn has, which is Trisomy 21.  It is important to let people know the misconceptions, the challenges, the joys, the facts about Ds.  We have to remind ourselves how much of an impact we have already made in the last few years alone.  Our children are going to live good lives right now thanks to all the important people who have shared and educated before us.  We need to continue to share and educate those coming behind us.  Our children do matter and they are beautiful people.  Spread the word!!

Monday, October 11, 2010

31 for 21: Day 11 Hurry, Hurry, Hurry!

Hurry up and wait!  I am sure you have heard that phrase before.  Do you ever feel that you haven't got a moment to breathe?  We are hurrying  to this place and hurrying to that place.  Hurry and eat your breakfast, its time to go to school/work.  Hurry to get to work because everyone in creation is going to school/work too and you only budgeted 15 minutes to get there, not 20..  Hurry and clock in so you won't be tardy and written up by your boss.  Hurry and do your work because there are all kinds of people depending on you to get it done.  Hurry and get the day over with so you can hurry home to pick your kid up from school.  Hurry and get home so that you can eat dinner, get the homework done, and get ready for bed.  DVR your programs on TV so that you can hurry through your TV shows; wouldn't want to waste precious time watching any commercials.  Hurry and get to bed so that you can get 6 hours of sleep so that you can wake up and do it all again!  Ever felt that way?  Have endless days, weeks and months like that?  When did we become a nation that always had to be on the go?  And why?   When do you stop and really relax and go all out and let your hair down?  Do you let your kids have a down day?  Do you let yourself have a down day?  I do have busy days, but I certainly do not have this kind of day every day.  I won't let it happen. 

Kids and babies have a way of slowing you down at times.   Mentally and physically.  I let Katie feed herself and some days it can take a solid half hour+.  One half hour of just letting her take her sweet time eating her way.  I let her lounge around in the bath tub almost every single night because she absolutely loves her bath time.  Sometimes I am thinking of other things I need/should be doing with my time, but I can't get back this time that I have with her now.  So my hurry up and wait just gets up and goes quite a bit.  It is a fact that those with Down syndrome have developmental delays.  To what degree depends on the individual.  I love being able to slow down while my Katie hurries to do the things she loves.   My Katie loves to hurry up and get outside so she can swing and play.  She loves to hurry up and run to the bath to enjoy her time in the water.  She loves to hurry to the TV to watch her Signing Time DVDs.  She loves to hurry and get into the kitchen to get her favorite snacks.  She loves to hurry and twirl around in circles so that she can fall over in laughter.  So, some hurrying is a great thing.  A wonderful thing to enjoy.  Don't just assume Ds equals slow because it is all in how you look at things.  Pick and choose what things you want to hurry up and wait for.  You have probably heard the quote "Enjoy the little things,  for one day you will look back and realize they were the big things."  I am so thankful to realize what all the little things mean already and my little one has me hurrying to soak up every minute of this wonderful life. 

31 for 21:Day 10--Gifts,Grandparents,and Grief

Remember that song by Garth Brooks--Unanswered prayers?  There is a line in it that says some of God's greatest gifts are unanswered prayers.  I already mentioned it once about a week ago about how I prayed for nothing more than to have a healthy baby.  Of course, that didn't happen, but my unanswered prayer did turn out to be a gift unlike any other and better than I ever would have imagined.  Not what I expected in the least, but the love, goodness and innocence that exudes from my child is better than anything  I could ever have hoped for. (now when she hits her teens, we shall see if all that goodness and innocence stay intact, somehow I doubt it) 

Speaking of Gifts, I highly recommend the books Gifts.  There are two volumes.  Volume one is a collection of short stories from moms and volume two is a collection of short stories from more moms, dad, therapists, family members, teachers, etc.  You can buy the books at Amazon and other book stores.  I have gotten several speciality books relating to Down syndrome from Amazon, some for me, some for Katie.  I like that they had the variety that my local bookstore did not. 

My parents have been wonderful to Katie.  My mom has watched Katie since she was born.  I couldn't have asked for a better person to watch her these last few years.  Of course, my dad has been right there to help her too.  They are retired so they spend lots of time swinging her and walking around the block with her.  We are looking at childcare options now, just to get her exposed to other children and for her to develop a more structured routine so that when she goes to school in 6 months, she won't be shell shocked.  The person having the hardest time letting her go has been me!  I know that no one is going to care for and love my Katie like my mom.  I am so blessed to have her so close to me.  My brother doesn't live here, so she doesn't see her other grandchildren as often as she would like.  I don't know what I would have done without them.  Love you both dearly!  Thank you for everything!  My husband's parents both live several states away, so we don't have any immediate family here except for my parents.  I wish that her other grandparents were here to so that she could soak up all of their loving all the time too!

I just wanted to say to my friends who are going through a difficult time right now---I love you guys.  You know who I am talking to.  There are some friends who are experiencing grief in their lives right at this moment.  I wish that you weren't going through these difficult times.  My heart aches for you and I am praying for you.  I deal with grief routinely whether I want to or not.  To those who do not know what to say to someone who has lost a loved one, just let the person know that you are thinking of them.  You don't always have to say something.  Sometimes it is just your touch on their shoulder, your hug, your eyes that can tell them what you aren't able to say.  People can be really uncomfortable with grief.  They feel like they shouldn't say anything because it might be the wrong thing to say.  If you are ever in doubt, just tell the person you love them and that you are thinking of them.  That is often all they need to hear or even all they can process at that moment.  Just don't avoid them.  That will make it even worse when you see them again.  And it is ok to speak about the person that has left their life.  Not talking about the person may make it seem like you have forgotten them.  Let them know a good memory that you have.  Don't ever tell the person that it has been a long enough time to grieve.  One of my favorite quotes---"To the world you may be one person, but to one person you may be the world."  Remember that their world has been forever altered by their loss.  Just be there for them in any way you can, whether it be a quick phone call, a two line note dropped in the mail, a meal, a hug, whatever you do best.  They will remember your kindness.

So, its goodnight for me.  I have got to start getting these posts written earlier.  I am a night person, but I need to quit typing these posts right before I go to bed.  I love me some good sleep!  Thank goodness my little bug likes a good night sleep too! 

Saturday, October 9, 2010

31 for 21:Day 9--Revisiting Family,Friends,Faith,Facebook and Football!

So picking up where I left off yesterday....

Where would I be without family, friends and faith?  Probably somewhere living  a very lonely existence.  When it comes down to what really matters in life, I find that I wouldn't be complete without these three things.

Hebrews 11:1--Now faith is being sure of what we hope for and certain of what we do not see.
I physically cannot see the Lord with my eyes, but I do see him in all things.  I see him in the sea showing us all the beauty of what the world is mostly made up of.  I see him in the breath taking clear blue skies on a gorgeous fall day.  I see him in the 80 year old man walking slowly across the parking lot.  I see him in the love we as humans share for each other.  I certainly see him in the beauty of my children.  I look at my Katie bug and know she was created in his likeness.  Her beauty is a result of his handiwork.  I kiss her and it feels as if I am kissing an angel.  Without my faith, I am nothing. 

My family and friends are amazing too!  I am so blessed by those who share my life with me.  I walk this journey with them by my side, always supportive and full of love.  A whole new world opened up for me with K's birth.  Facebook has a lot to do with that too.  I have a supportive DS family and we are connected by FB.  I remember about a year ago being a member of FB, but not really embracing what it was all about.  I know a lot of people who don't like FB, but 500 million people are part of this social network now.  I have reconnected with long lost friends and I am able to keep up with everything this is going on with people who don't live near me.  I like asking a question and getting instant answers from friends.  I like sending a message to someone and not having to remember their email address.  I like looking at photos of events happening in my friends' lives.  I can play Farmville!  (ha!ha!--I'll save that topic for another post someday!)  Yes, you do have to be careful of what you say on the internet.  Once you hit send, there is no taking it back.  It is gone forever into a viral world that we have no control over.  But FB and the internet do have a place in my life and it has been for the good. 

Oh, and football, what can I say about football that hasn't been said in the past few weeks?  Its a great thing to watch on Sat and Sun.  We are a house divided on Sat---Bulldogs, Gators, Tigers and Wildcats.  Let's face it folks, no matter who you root for on Sat--SEC rules!  As for Sun, well there is a little guy named Tebow who has me rooting for a team I could care less about, but what's a girl to do?  Go Broncos! (quietly said of course)

I am sure that all of you out there also have strong opinions on one or all five things mentioned in this post.  Where would we be without them?  Thank you friends, family and God for loving me!

Friday, October 8, 2010

31 for 21: Day 8 Friends,Family,Faith,Football,Facebook and Fatigue!

Okay, this post is a cheating post!  Meaning, I am not going to talk about all of these things tonight.  Fatigue has set into these old bones of mine.  I can remember back in the day when staying up this late was a piece of cake.  I can't think straight when I am this tired.  Just living and loving life can be tiring even when you aren't doing anything but sitting at the computer.  Doesn't mean I stop enjoying life for one second though. 

Have you ever felt fatigued during your journey in life?  I have heard so many people say how strong I am for raising my daughter and for being so positive during all of her challenges in her short life.  What else would I do?  I love this girl immensely.  There have been days when I have cried and days when I have shouted with joy to the rooftops.  What I have learned to do is not dwell.  Women are notorious for picking apart things.  We worry too much about what other people are thinking or what they are saying.  When I am tired of Kaitlyn doing therapy every week; I just take the day off and spend it with her.  When I sit and worry about what she can't do, I start thinking of everything she can do.  I do believe that if you let worry eat at you, you will become fatigued and you will reach a breaking point. 

Remember to recharge yourself.  I lean on the Lord in difficult times, but I seek him out in the smooth times also.  It was during those first few months of K's life that I knew that I wouldn't have made it without him by my side.  My burden was his burden and still is.  When I am fatigued, I pray for strenght.  I pray for peace and understanding.  And then I start praying for those who have so much less than I, for those who face battles I cannot fathom and I find that being tired mentally is just a temporary moment for me, that I can pull out of it and keep moving forward.  And that is what I have done when fatigue has set in these past few years of my life.  I took one step at the time and it has led me exactly where I want to be.  Don't let fatigue settle in and consume your life.  You have so much to offer the world!

So, I will finish the rest of my f thoughts tomorrow.  I am going to sleep off this fatigue for now.

Thursday, October 7, 2010

Day 7:31 for 21---Eastern Europe and Expectations

So I left off yesterday with a brief statement about Reece's Rainbow.  Here in the US we have a waiting list of families who want to adopt a DS baby.  That is not the case in other countries.  I have followed several blogs documentating several families and their journey to add to their families.  The ones I have followed have had their children adopted from Europe.  There are 147 million orphans in this world.  Unbelievable.  The families I have followed showed adoptions of children with Down syndrome.  These children are in baby orphanages until the age of 5, at which time they are transferred to mental institutions.  The stories reported out of these institutions are horrible.  In Eastern Europe our children have no value.  Some children have never had a single visitor to the orphanges.  I can't imagine children who have no one to comfort them when they are sick, no one to hold them when they can't sleep at night, no one to say I love you to them, no one to cheer on their every accomplishment.  Every time I have gone to this site, I sit and cry my eyes out that there are so many children who have no one.  Reece's Rainbow has about two hundred children on the website who are adoptable at this time.  You can sponsor a child during the Christmas season, you can pick a child and be their prayer warrior, you can put money into a child's fund to help them find their forever family.   Every dollar and prayer counts to save a life.

One of the blogs I follow, Adeye's , shows what a wonderful testimony we can be to those who believe in the power of praying.  Her family just adopted two girls this summer from Europe who have DS.  She spoke of what was weighing on her heart about a child she had a chance to interact with briefly during their adoption process.  In five days, this childs adoption became fully funded with over 20,000 dollars raised from people who felt led to help save a childs life.  What a testimony!  Someone out there has probably heard of God's call to bring this child into their life.  I cannot wait to hear what lucky family is going to have this beautiful child as their new daughter! 

Ultimately we should pray that families in Europe and other nations open their hearts to children who are diagnosed with DS.  Wouldn't it be awesome if we could just close orphanges because there was no need for them.  Thank you Lord to the families who so willingly opened their homes and hearts to these children and helped to save them from a bleak life of beds and cribs and limited human contact.  Check out Reece's Rainbow, you can  be a part of saving someones life.

Expectations:  I expect my daughter to live a  life full of love and laughter.  I do expect for her to be treated as a person who happens to have DS, not a DS person. I do expect her to have other childhood experiences just like anyone else who is raising a child.  I do expect her to have manners.  I do expect her to try her best at whatever goal she is trying to reach.  I expect her to be kind to others.  I expect Katie to be Katie and no one else.

Isn't it funny how we are always comparing our children to each other?  Example--little Joe walked at 10 months, is your child walking now?  Is she talking now?  I bet the terrible twos are in full swing at your house.  Crawling, rolling, sitting, riding a bike, etc. I could go on and on.  We have expectations in every aspect of our lives.  Our boss expects us to be at work on time and to do the job we were hired to do.  The person driving in the other lane expects us to stay on our side of the lane.  We expect our cars to stop when we have no gas in it.  We expect our paychecks to be in the bank and ready to be used on paydays.  We expect to the sun to set sometime in the evening.  Think about how much we expect in a day.  Probably more than you could have imagined.   We have all compared something at one time or another.  How has your expectations changed from what you first thought DS would be like?  Have they changed at all?  Am I still comparing?  At times yes, but I was reminded by a friend that her Katie will reach her goals in her time and no one elses' time.  What does she expect from me?  Just what I give her now, which is love, love and more love, food to eat, a clean bed to sleep in, toys, books and Signing Time videos to help her learn, clothes to wear and prayers.  Are there are expectations you need to let go of and some you need to accept? 

Wednesday, October 6, 2010

Day 6: 31 for 21---Designs,Diagnosis,Dads and Donations

My blog is new yet really old.  I know there is a place to find when I first started this blog, but I have no idea where I saw that. I think I came here almost 2 years ago and just left the pages blank.  This blog has been silently sitting here waiting for me to take the first steps in bringing it to life.  I am not computer savvy at all.  I know that I need to update and add pictures.  I need to get all the blogs I read now linked over into this space.  (I just add to my feeds currently.)  I am sure there are many other things I could do to really make this my space, but for now it will be tweaked when I am able to find time. 

Of course my daughters designers' genes is what brings me here in the first place.  Do you remember how you felt when you got the diagnosis?  I am pretty sure that those feelings for most everyone is a very vivid memory.  To this day I remember the exact thoughts that ran through my head when I was told the news.  (I was alone in the hospital room when the news was given to me.)  I very calmly asked what characteristics did the doctor see to make them suspect she had Down syndrome.  I then asked if the nurse would call my doctor to get me discharged so that I go and be with my daughter as they transferred her to another hospital. I remember the doctor specifically asking me if I understood what they had just told me.  I said yes, you are saying my child probably has Down syndrome.  My voice or facial expressions said anything to them.  I just smiled at them and started calling my husband and parents.  Kiley's first words were "Oh no Donna" and my parents couldn't even say anything, they just started crying.  This would be the beginning of walking into the unknown.  We arrived in the NICU on Easter Sunday.  We knew that it would be the next day before we saw the geneticist and that they would draw blood to confirm their suspected diagnosis.  It would take approximately 7 days to get the actual confirmation of DS.  Once we were told, we kept looking at K to see if we could "see" the DS.  I wanted to read up on DS, but my request for a book was put on hold until I was given the "official" diagnosis.  They didn't want me to read the book and get upset if it turned out she didn't have DS.  I told them that I would be better educated if that was the case, but still, no book showed up until after it was confirmed.  Once they suspected and told me their suspicions, I knew that the diagnosis would confirm it.  I never doubted it for a second after that.  There are three types of DS.  K has the most common form.   It had not been 16 hours since I had just given birth and here I was jumping around and rushing home to pack and get on the road.  Never mind that I had just come off of complete bed rest for the past several weeks and two back to back hospitalizations for pre-eclampsia.  I knew there was nowhere else for me to be than to be with the precious child that God had just given me.  So that was how we received the diagnosis. 

Thank God that I married a man who loves his children fiercely.  He fully embraced K just as she was.  He wanted the same things I wanted, for her to get healthier and to take her home and love on her.  Kiley has a very kind heart and K is very luck to have him as a dad.  His children mean the world to him.  I definitely think guys handle the diagnosis differently than the women.  We tend to stress and over analyze too much.  Guys just accept and keep moving on.  Now I am not putting a stereotype on either sex.  I know there are men who cried and women who didn't.  I just feel like in general, men keep their feelings hidden for the most part. Divorce rates are much higher for families who have special needs children.   I remember when we joined a support group.  Kiley went just to support me.  He did it because I asked him to, not because he felt like he needed it.  Whereas, I needed it then and still do now.   

Which leads me to a different topic--donations.  If you are looking to support a group, you can choose to help a local Down syndrome support group or donating to a Buddy Walk.  There is also an amazing ministry called Reece's Rainbow.  They help find forever families for orphans in other countries.  More about this ministry tomorrow......

Tuesday, October 5, 2010

31 for 21:Day 5---Christianity,Characters,Change and Cheesus

I am in love with the TV show Glee.  I love the story lines and the singing.  Tonight's show was about spirituality.  One of the main characters sees Jesus in his grilled cheese--and voila!  You have Cheesus!  The writing on this show is incredible.  I lol several times in every episode and usually have to rewind my DVR every week just to hear the music again.  Two of the characters who have small recurring parts happen to have DS.  Seriously, I would love this show without all the diversity they showcase, so it is an added bonus to have them on the show.  Tonight I cried when Sue talked about how she stopped believing in God because she prayed all the time for the kids to quit making fun of her sister.  At the end of the episode she asked her sister (who has DS) if she believed in God.  Her sister replied that God doesn't make mistakes.  I know I have heard that line (and I do believe it) so many times since K has been born.  I love that so many people do believe in a higher power. 

The topics tonight touched on all kinds of hot topics in religion.  I love it because it is relevant and kids are watching and loving this show.  Change happens one step at a time.  We can breakdown the stereotypes of what DS is and so many other things through all the mediums available to us in this day and time.  How many people hate change?  Why are we so resistant to change?  I know the word change has come up a million times since I had K.  I think about how she has changed my life in ways I never would have imagined.  How many times do we just sit back and just let things be because we are afraid of the outcome?  I remember telling one of my friends many years back about faith and stepping out on faith.  Sometimes you take a step and you don't know where it will lead you.  One of my favorite poems is by Robert Frost....

                                                  The Road Not Taken

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.   
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.    

Your choices can say a lot about your character.  Are you traveling down the road you were meant to?  Have you made choices that you wish you could take back?  Its never too late to go down a different road and make the changes that could make all the difference.  Thank you Glee for showing life in all the many different forms it comes in by having an incredible diverse cast of characters.  Thank you for continuing to bring awareness to DS.  You rock!