He is a part of our story and we are a part of his. His being in our life changed us forever. Our being in his life changed his life and gave him a future. The mutual impact is profound. We miss him everyday.
So what did we learn about Down Syndrome while we had him?
We learned that Down Syndrome is about an extra chromosome in his cells. We learned that the extra chromosome give him more widely spaced eyes, lower ears, a sweet round tummy and rather poor posture. We learned that Down Syndrome gave him low muscle tone and that made him slower to crawl, sit, stand and walk. We learned all of those things so that we could strategize his care. Not all of his issues came from having Down Syndrome but it was a good starting place. We consulted with a speech pathologist friend about things to do to strengthen his swallow reflex. I talked to my friend Gillian who has two children with Down Syndrome-she was a wealth of help and information for me.
We learned that while he has Down Syndrome, he isn't Down Syndrome. He is very much himself-lively, funny, a book lover and cuddler. After a while, we didn't really think that much about it except for when we were in public and people would ask. There is a famous conductor in China who has a son with Down Syndrome and many people knew about him. That was always a starting point.
Because of Down Syndrome and our little guy, we learned about love. That's the biggest thing. Our hearts were enlarged and our spirits enriched. He gave us eyes to see. We are forever changed.
From the time we got him and he looked like this.