MOSAIC MOMENTS

Today I have a story to share with you from Gem whose daughter has Down syndrome. Gem has been on this journey for 35 years now and has, without a doubt, a wealth of wisdom in raising a child with Down syndrome-especially in an age where children with Down syndrome were rarely raised at home.

Gem wanted to include pictures with her story, but unfortunately she and her daughter Claire were severely affected by Hurricane Ike and now all those pictures are gone. But even without the pictures, the story speaks volumes on its own!

There is a huge twist to this story…. one that Gem doesn’t even realize! If it were not for Gem and Claire…. my son, Tim would not be where he is today! It is amazing how our lives have interconnected all these years later! Read on…..

My Claire was born 35 years ago. Her father and I knew little about Down syndrome, but we knew she had been sent to the right place, because her father was disabled from age six with rheumatoid arthritis. However, her father, 20 years my senior, died when she was only two months old.

So, there I was: a young widow with four children; the youngest “afflicted” with Down syndrome. How was I to cope?

I coped precisely because I had four children; the youngest “afflicted” with Down syndrome. I had to cope for their sake.

I contacted MHMR in our town and asked them about how to get Claire started on the right path. “No one has brought us an infant before,” they said, “But give us a couple of months.” To make a long-story short, Claire was the first student in the first infant stimulation class in the state of Texas.

Meeting the parents of other children with Down syndrome made me realize how lucky we were. Claire had no heart defects or other ailments associated with her “affliction.” With the help of MHMR, a supportive family and Claire’s siblings, she thrived. She was so loving, so much fun to be with. I soon realized that her “affliction” was not an affliction at all, but a blessing.

Thanks to infant stimulation and some excellent special education teachers, she can read, write, does her own banking, pays her own bills and can shop with little or no supervision. Everyone who meets her is inspired by her confidence and independence. Now that her siblings are grown and on their own, she is the reason I am not afflicted with empty nest syndrome. My old age is a time of joy rather than loneliness. She is in a program for adults like herself and has a lot of fun with her life. She works in a greenhouse, ceramics shop, computer lab and comes home each day all perky and full of news.

When she was about eight years old, she came up to me and asked, “Mother, what’s wrong with me?”

“Not a darn thing,” I replied. “If everyone were like you, this would be a better world!”

That is as true today and it was then.

Gem does not realize this, but it is her and Claire that I have to thank for that infant stimulation program! Fifteen years later, I used the same program in the same town for my son, Tim who has mosaic Down syndrome. If it were not for that great Early Intervention, Tim would not be where he is today!

Thanks Gem for standing up and stepping out!

note: after posting this article, Gem explained that although she lives in Galveston now, the infant stimulation program began in Beumont. I am sorry for the error in this. However, either way, it was Claire who was the first infant in Texas to be in such a program and since I am in Texas, I still have her to thank!

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