Thursday, March 21, 2013

Celebrating Down Syndrome

MissK




Today is Down Syndrome day. It is the 21st day of the 3rd month so we are celebrating the 3rd copy of the 21 chromosome.

I remember back to when we were first told that Miss K might have Down Syndrome. Then we waited for the chromosome test results to come back and it was confirmed she had Down Syndrome. At that time celebrating Down Syndrome was not something I thought I would celebrate. It is a disorder, it is not normal, there are delays, medical issues and there was quite a bit of unknowns. Yes, those are all true but even in all this we see that God is good and we can trust that this is part of his plan for our lives.

Down Syndrome affects about 1 in every 700 children here in the US. Down Syndrome. It is not normal -- there should be a total of 46 chromosomes but with Down Syndrome there are 47. There are delays in physical ability, and mental which impacts walking, running, jumping, skipping, speaking, learning but it is delays. There are medical issues for Miss K that meant surgery to correct duodenal stenosis and then heart surgery both before she was even a month old.

So what is there to celebrate? There are numerous things to celebrate -- the medical care that Miss K has received since birth. She was born overseas and it was there that she had the first two surgeries. We are thankful for the doctors and therapists that treated her when she was born. There are the doctors and other therapists that we have met along the way. The speech therapist that lived in the same village as we did in Hong Kong and offered her services, and most recently the therapy center near our house providing the boost that Miss K needed at this time.

Because of the delays we tend to celebrate the accomplishments even more. She hit a number of the baby milestones and the end of the range. Now she has learned to skip and hop. She loves ballet and her skipping and hopping are needed for that. We celebrate things like learning to zip her coat and then we have to push her to keep doing it. Miss K is reading and that means she can read the menu and decide that she wants pizza. We celebrate her improved speech at the same time having to deal with what that means. She has learned to make excuses -- she can't sit in the chair because "it is too pokey" or she can't put leave her stuffed animal at home because "he is shy".

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Miss K has an incredible memory which continues to amaze us. She was right in remembering the neighbor's name when we got back to the house here in the northwest. She has memorized the books of the Old Testament with her Sunday School class. She has her timeline down from Classical Conversations.

So many of those unknowns have turned into blessings. I am thankful that while they are unknown to me, God knows them and has planned out all the details.

She keeps us laughing. As we were doing math this morning, I asked her what 2+2= she replied, "that is a good question."

We continue to have challenges but isn't that true with each child. We celebrate who Miss K is and all that she has done. Down Syndrome is part of who she is but she is so much more than that. Look beyond that and see a girl who loves life, princesses, pink, ballet, sparkles, chocolate, and chocolate mint ice cream.

We celebrate life today.

3 comments:

  1. awesome and we celebrate with you! Do are doing a fantastic job -- what a wonderful mother you are -- Beth. Great to know you!!

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  2. What a beautiful tribute to your daughter!! I loved it, and it made me smile. She sounds like a precious, sweet girl, and I giggled when you talked about her making excuses. ;-) I can related on celebrating the milestones even more than with a healthy child. My youngest was born with a birth defect which required major surgery and left her with severe delays and behavioral outbursts...but along the way I have celebrated so many of the little things with her so much more, because I know how hard she has worked and how far she has come, and what a blessing it is to see her reach those milestones. It just makes them that much sweeter. So I can truly rejoice with you over Miss K's achievements and milestones as well. I know she is a blessing to you, and as the mother of a child with "special needs," I still would not change anything about my child (although I would make her life easier, if I could, and take away the pain she has experienced), and I can tell from your post that you feel the same. I know there are difficulties that come with having Down Syndrome, but I have always felt that people with Down's are such a blessing, and usually some of the sweetest and happiest people I have ever met. Thank you for sharing your heart. I enjoyed reading your post. You are an awesome mom. :-)

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  3. Thanks for the lovely article Beth! I am missing seeing Miss K and J.;) As we enter a new stage in finding diagnosis and solutions for V, I can especially appreciate the joy that comes with every new milestone.:) Blessings!

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