Friday, December 21, 2018
A Quilt About My Son with Down Syndrome
Ninety-nine percent of the time, my blog is about sewing and quilting. By design, my family and life outside of crafting make rare appearances here. This post is an exception …
I am a stay-at-home mom to two boys. My older son is in fourth grade, and my younger son is in second grade.
When my younger son was just 10 hours old, a doctor delivered startling news to me and my husband: our son has Down syndrome.
My husband and I turned down offers of genetic testing during my pregnancy. We knew this meant there could be some surprises after delivery. Coming to terms with this diagnosis, however, was the hardest thing we’ve ever done.
On one hand, this diagnosis was devastating. The birth of a baby is a time for joy and hope. Although our newborn was quite healthy—he was a full-term delivery without any serious medical issues—we had no idea what medical and/or developmental challenges he would encounter later in life. (People with Down syndrome often have vision, hearing, gastroenterological, and cardiac problems. They have an increased risk of everything from celiac disease to leukemia.)
On the other hand, we don’t believe in accidents—this baby was given to us purposefully—and we believe that some of the most rewarding experiences can come from unexpected circumstances, even difficult ones.
We’re eight years into parenting this little boy now. The first five years of his life, although filled with hundreds of medical appointments and therapy sessions (our guy has had physical, occupational, and speech therapy from early on), went pretty smoothly—more smoothly than our older son’s! The past three years have seen many more behavioral issues, but we’re working through them at home and at school.
Our little guy with Down syndrome is healthy. His most notable problem is bilateral hearing loss, which requires him to wear hearing aids. He loves bowling and soccer and swimming. He can read fairly well, although his comprehension is weaker than his ability to recognize words. His speech is seriously delayed, and it’s hard for many people to understand him. His first language is American Sign Language, which he and I still use daily. He also uses an iPad outfitted with a special program to help him communicate at school.
This kid is a love muffin. He specializes in hugs and high-fives. He’s socially outgoing, and when we go out and about, we always make new friends (especially babies—this kid loves babies!). He has a laugh that stops people in their tracks.
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’ve been wanting to make a quilt about this parenting journey, to try to share with the quilting world these simple facts about my life, so I designed 47XY+21 …
It’s an abstract rendition of our son’s 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, we 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.
This project was pieced with Kona Cottons in white, tomato, and indigo. I reverse-appliqued the heart as well as the karyotype label. The heart, with its gentle curves, was straight-forward. The label was harder. I had difficulties maintaining the detail in the letters and numbers. I’m still fascinated with the process of reverse applique, though; I’m sure it will make an appearance in future projects.
I quilted the indigo background with straight vertical lines. I think anything more would have taken away from the minimalist feeling of the finished product.
I’m honored that 47XY+21, along with my quilt Circa 1870, will hang at QuiltCon in Nashville.
I usually end my posts with a question, something to spark conversation in the comments, but all I really want to say today is thank you for letting me wear my heart on my sleeve for a moment. : )
Linking up with Let’s Bee Social and Main Crush Monday ...