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

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!

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

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!!

Back to blogging 31 for 21 day 1

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?!