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 ...

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  1. Hi Michelle, I appreciate your openness and honesty about your years parenting a special needs child. You are looking at the glass as half full (or completely full it seems)and Ryan is blessed to have you as his mama. Having a special needs child in my extended family, I am slightly aware of some of these challenges. It has forever altered your daily life. The quilt is exquisite-what a lovely tribute to kids with Downs and their parents. I see a ribbon hanging from this quilt in February.❤️

  2. Michelle this is a beautiful quilt and I am so glad that it will be shared with so many at QuiltCon. Both your boys sound like joys to have around. Congratulations to you for doing such an outstanding job as Parent.

  3. Hi Michelle! What a wonderful post to read today. It must be hard to share this with us and the world. I am confident that your youngest son was chosen for you, to show you what strength and love you have inside of yourself. This is your family's norm and all of you were blessed with that extra chromosome. I didn't realize there are so many health issues with Down syndrome babies. How fabulous that you will be able to share your quilt and story at Quilt Con. That too is another part of the reason you were chosen for your very special boy. {{Hugs}} and wishes for a very Merry Christmas to you and your family. ~smile~ Roseanne

  4. Thank you for sharing your journey and the quilt, I was hoping you were going to say it was accepted into Quiltcon and then you did!

  5. I'm welled up with tears reading this! I am SO GLAD this quilt is going to be at QuiltCon as a testament of LOVE for your son and compassion for those with DS. Thank you for sharing a little bit about your family story with us. <3

  6. What a beautiful quilt. Thank you for risking a bit of vulnerability and sharing a small slice of your life and family with us through this quilt. I am so glad that it was accepted to QuiltCon as I would love to see the love radiating from it in person. I can feel it through the screen, so I can only imagine how powerful it is in person. Merry Christmas and I hope to see you in Nashville, too!

  7. Thank you, Michelle, for sharing your heart. I'm glad that your quilt will be hanging at QuiltCon where more will see it.

    Although my situation with Eleni was so very different, I do understand how that transition on birth-day from what you expected to the new reality that confronts you is really the hardest part. That transition "coming to terms" is something that is both a head-on collision and a gradual, lifelong process. I wish you continued peace and joy and growth as your lives together unfurl.

  8. Thank you for sharing your story and the meaning for your quilt. That's a wonderful way to show your love for your little boy. Thanks for sharing.

  9. Thank you so much for all your insightful posts!

  10. Thanks for sharing. It's an amazing quilt. Congratulations on two being selected for QuiltCon. Merry Christmas.

  11. Michelle, your quilt is a beautiful tribute to your son. When you described him as a love muffin I immediately thought of an incident which happened here in Australia recently. Prince Harry was visiting rural Australia and there were many, many children lined up to greet him. They had been advised to just shake hands or wave. But one young boy with Downs Syndrome was so taken by Harry's beard that he had to give Harry a cuddle. Harry hugged him back and the boy then stroked his beard with delight. It was a beautiful moment enjoyed by everyone. Both your sons are precious. Enjoy them

    1. What a sweet story. I can imagine my little guy doing the same thing. : )

  12. A beautiful, moving story and quilt. Thank you for sharing.

  13. What an amazing quilt and an even more amazing story. Raising a child with special needs is always a challenge but the rewards can be that much greater. I recall that things other parents take for granted (like holding a crayon or drawing a circle for the first time) is cause for so much joy. Congratulations on getting both quilts into QuiltCon. Thanks for sharing your story and merry Christmas!

  14. Thank you for sharing this story & I'm forever amazed by the challenges some parents face & being able to be open & blog about it. Take care.

  15. I was already so moved after reading the story on IG. Now re-reading it, I am still moved and so impressed. I can not imagine any of it and you have such a binding way to describe your love and this beautiful relationship. To me it reads like a love letter to your son! Thanks for sharing and virtual hugs to all of you. xo

  16. The story behind this quilt brought tears to my eyes. It's a lovely quilt made brilliant by the story behind it. Congrats on having it included in the line-up at Quiltcon.

  17. This is a stunning quilt and a beautiful story to share. I find people with special needs can be our greatest teachers. Thank you for sharing.

  18. Love your story and the quilt. Kudos to you for sharing openly. Sending lots of love, hugs and best wishes to you and your darling son. Oh and congratulations on making it to the Quiltcon!!!

  19. Thanks for sharing your story & although we have children, none are "special needs", but I do have an intellectually disabled younger brother who I now have to deal with long distance. There are only the two of us now, so responsibility is on me and it is hard living in a huge country & being so far away, but you do what you can & as you say, it is rewarding in different ways. Thank you again & although my blog is sort of "quilting", a lot else gets talked about too. Take care.


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