The short version of this post is that October is Down Syndrome Awareness Month. If you don’t have someone with DS in your life, I think you’re missing out. : )
The long version of this post is that 10 years ago I gave birth to a beautiful baby boy. He was my second son (Big Brother was 19 months old at the time) and was born full-term and healthy. However, unknown to me, my husband, and our medical team until the time of delivery, this little guy had a significant chromosomal abnormality: Trisomy 21, or Down syndrome.
Although my husband and I were thrilled to have this baby join our family and were certain it was no accident he was given to us, raising a child with special needs was not something we thought we’d be doing. We had no idea what developmental or medical issues our son would encounter, and those first weeks and months of his life were hard.
But we took it one day at a time, and here we are 10 years later with a sweet, silly boy in our lives. What can I tell you about this kiddo? He loves basketball and bowling. He’s a devout fan of Thomas the Tank Engine and loves books, chocolate ice cream, and babies. He spends more time laughing and dancing each day than any dozen people with the standard-issue number of chromosomes do! Of course, he has some challenges. His biggest medical concern is bilateral hearing loss, for which he owns, but currently refuses to wear, hearing aids. Developmentally, he has significant problems attending, and his speech is very delayed. I assure you that doesn’t prevent him from getting his point across (for better or worse!).
So that’s my story: I have a child with special needs. Parenting a child like this was not something I would have volunteered for. I would never have thought I would be able to take on such a challenge. But his birth is one of the best things that’s ever happened to me as a mother, as a wife, and as a person.
I captured my feelings for my younger son in a quilt I designed and made called 47XY+21. It’s an abstract rendering of his karyotype (that is, a picture of
his chromosomes), including the extra chromosome on the 21st pair that
causes Down syndrome. As the heart surrounding that trio suggests, my husband and I feel nothing but love for our son’s bonus chromosome. We can’t imagine
him without it. We wouldn’t want him any other way.
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