Friday, October 2, 2020

Down Syndrome Awareness Month / Beauties Pageant 100

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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The pageant rules are simple:
  • Post your finish in the linky tool. (No links to your own giveaway or linky, please!)
  • Point your readers back here with a text link or use the button above.
  • Visit and comment on other participants’ finishes.

You are invited to the Inlinkz link party!

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9 comments:

  1. Good morning, Michelle! We never know what we can handle or face until we are asked. I'm 100% certain that you son feels all your love and support, and this is his normal. Just thinking about his happy self makes me smile and your touching tribute quilt is a fabulous reminder to those of us who don't have a special needs child. {{Hugs}} a bunch for you. Enjoy the weekend and thank you for the linky party today. ~smile~ Roseanne

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  2. As a retired teacher of children with special needs, I read your post with a smile on my face. I worked with many children with Down's Syndrome and their families. Challenging sure but always so rewarding. I'm lucky to have been there for many throughout...my parents always had my home phone number and good relationships were a given between us. Enough about me...I'm not at all surprised by the good place you find yourself in, Michelle. Lovely special quilt too.

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  3. Thank you so much for sharing a bit about your son with us. He sounds like he was sent to the perfect parents to love and grow with him.

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  4. I love the quilt! I am sure that your boy is rocking that extra chromosome and brings a lot of joy to your family. As for hearing aids, most of my family has them. I should get mine checked! Hugs to you and all your kids. Have a lovely weekend!

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  5. Thanks for sharing the story of your blessing w/us. I know he brings plenty of joy and laughter. Great quilt too! God bless.

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  6. Beautiful, Michelle. Your quilt in recognition of DS, your son, your family. We should all be blessed with such a child.

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  7. I have always believed that God only gives special children to the best parents! Your love for your son is so obvious--makes me smile! Thanks for reminding us what a blessing these children are!

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  8. A lovely tribute to your family's circumstances - every child is a treasure and can teach us so much, special needs children even more so...your story warms my heart!

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  9. Hi Michelle, I'm sure that it wasn't easy but in the end a child is special, not matter what! I'm dealing with different issues but even with the struggles, our children are great and we love them no matter what! Take care.

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