Monday, April 9, 2007

Worldwide Down Syndrome Day

I missed it. I guess that is a result of living in my own little world here in what often seems to be the middle of nowhere. Now that I know about it I will remember it next year. It is rather easy to remember 3-21 is Worldwide Down Syndrome Day. Why that date? Down Syndrome is 3 copies of the 21st chromosome.

We have lived with DS for 2 1/2 years. It is full of ups and downs. Now seems to be more ups than downs. I do remember the downs, the days of wondering, tears, fears, and not knowing.

Things I am thankful for about Down Syndrome:
1. There is quite a bit of research and books available. I have a collection on my shelf -- Teaching Math to Down Syndrome Children, Teaching Reading, Gross Motor Skills, Fine Motor skills, Language and Communication, Babies with Down Syndrome, and a few more.

2. This might sound a bit strange but in a way I am thankful for the distinct features. That clues people in a bit. I am also thankful for her small size because people don't often realize she is as old as she is so their expectations are not as high.

3. I am thankful for the community I have met through DS. I have met so many wonderful moms and dads and extra blessings. I remember soon after Miss K was born and we learned she had DS I asked a missionary if she knew anyone anywhere who has a DS child and was living overseas. No, she didn't but then a week later she called and said they just remembered a couple living 2 hours south of us with a 10 year old son. That was the first parent I talked to and I was so encouraged. I also joined an online homeschool group after we learned Miss K had DS and even before she came home from the hospital. That also has been a source of encouragement and help.

4. I am thankful to God for all he has done in the past 2 1/2 years and know that he will continue in the years to come. He actually began working before she was born in moving us to deliver in a hospital that had a NICU. He provided doctors who were willing to take risks and perform her heart surgery. We had a wonderful PT who pushed Miss K and donated her time to help us. This list goes on including the Speech therapist that lives here in my village in the middle of nowhere and is working with Miss K.

Today most days she is just Miss K who keeps us laughing and some days she is Miss K with that extra chromosome that gets in the way.

So today I am celebrating a bit late Worldwide Down Syndrome Day but really I celebrate it every day.


Sheila in Seattle said...

Great post.

An aside, I think it is funny that you say live in the middle of nowhere. I think of you living in a cool city.

Bo Tai-tai said...

It might be a cool city but it takes an hour to get to that part of the city. I do enjoy going to that part of the city. Heading downtown to get some groceries before our trip this week.