Yesterday was World Down Syndrome Day

It’s a day designed to raise general awareness about Down syndrome and to celebrate individuals who carry an extra chromosome.

Charlie at 6 months

Of course I appreciate any opportunity to celebrate my children, but I didn’t mention it.  This doesn’t mean Down syndrome isn’t on my mind.  It ebbs and flows in and out of our daily lives.  Sometimes it’s fully present, demanding attention and bringing with it concerns about speech delays, orthotics and the like.  Most days it takes a backseat.  For this I’m thankful.

For a handful of reasons, Down syndrome has been top of mind for the last week or so.  I’ve had to fill out paperwork re-enrolling Charlie with our State’s Division of Developmental Disabilities, confirming that yes, he still has Down syndrome.  It’s purely ceremonial, as we have never received a dime for any of Charlie’s medical or therapy expenses.  Yet we want to keep his name in the system on the off-chance they decide to offer him services medical or otherwise.

Anyhow, this mountain of paperwork led me to a document I’d never seen before.  The genetic counseling transcription from Charlie’s medical records.  The transcription began during my pregnancy and ended with Charlie’s *official* diagnosis six days after his birth.  I found the cold hard facts fascinating.

From the transcription:

Mr. and Mrs. Hodge were seen through the Genetics Program during the pregnancy with Charlie.  Prenatal ultrasound noted fetal renal pyelectasis which could be associated with Down syndrome.  They were given a 3% chance for Down syndrome, based on the ultrasound findings.  No other markers of Down syndrome were seen.  They were seen through the University of Washington Perinatology Clinic for additional discussion.  They were aware that genetic amniocentesis was available, but declined genetic amniocentesis, as they felt that information would not be of any value to them during the pregnancy.

Big brother Henry meeting Charlie for the first time…

Charlie was thought to have clinical Down syndrome at birth…consultation was obtained from neonatology who agreed his features were suggestive of Down syndrome.  Genetics consult was obtained…{and} arranged for a blood draw for chromosome analysis which returned confirming Down syndrome, with the chromosome finding trisomy 21 {47, XY, + 21}

The family was given the chromosome results, which confirmed trisomy 21.  We reviewed that trisomy 21 is the most common form of Down syndrome.  They were told that this occurs by accident and is not their fault in any way or caused by anything in particular that they did before or during the pregnancy.  There is no known increased risk to other family members to have a child with Down syndrome.  The couple themselves, will have about a 1% risk for recurrence of Down syndrome in future pregnancies, until Mrs. Hodge is age 37, at which time her age-related risks will take precedence.

There they were, the cold hard facts.  I remember those conversations, but they didn’t tell me the details I longed to know about my child.  Yes, I understood he had Down syndrome, that his genetic make-up would forever make him different.  But my heart couldn’t understand the difference.

***********************

I began to write out my thoughts on this comparison and contrast and along with some new insight, they seem fitting to share on this *day after* World Down syndrome day.

jux⋅ta⋅po⋅si⋅tion

1.  an act or instance of placing close together or side by side, especially for comparison or contrast.

2.  the state of being close together or side by side.

——————

After Charlie was born I never imagined such a simple, yet wonderful scene would take place between my two boys.  I didn’t necessarily have other scenes playing in my head, but I was certain anything that fell under the realm of “normal” would no longer be a part of our family.

I was wrong.

Perhaps this was because every authority figure we met early on repeated ad nauseam a list of all the ways my son was and would be different.  Yet they never mentioned he would devour blueberries, adore his brothers, love to dance and have an infectious smile.

Often I’m asked about Down syndrome and more specifically how it separates Charlie from my other sons.  I struggle with this question because it’s hard for me to define what makes Charlie different – how he compares to his brothers.  It’s true every single cell in his little body is different, yet for the most part he is no different from them.

Charlie didn’t walk until he was two {which was the result of Down syndrome}, but he loves to snuggle and read stories {which I’m pretty sure is not the result of Down syndrome.}  I find it fascinating the little differences between Charlie and other “normal” children often emerge in little quirky ways and not necessarily great big ones.

And yet I still wonder: How can my son be fundamentally different yet fundamentally the same?

It’s a subject I find difficult to clearly express even when it’s part of my daily life.  I suppose that’s why so many new parents initially respond with feelings of fear and anxiety when they learn their child may have Down syndrome.   Worried the *differences* will become omnipresent.  Yet, if I’ve learned anything in the last four years, I finally understand the differences don’t matter.  Which might help to explain why so many families who go on to raise a child with Down syndrome report their feelings turn to wonder and joy.

Perhaps this is why I dwell on the simple moments of our days.  Brothers playing side-by-side, family dinners around the table, a morning at the park.

These moments hold weight, revealing the true value of this life.

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9 thoughts on “Yesterday was World Down Syndrome Day

  1. Excellent Libby! Your compassion, love and adoration for your children is simply amazing and worthy of many praises. What a journey it has been for your family and I’ve so enjoyed watching you grow as a mother through it all. Your an inspiration not only to other mothers who face Down Syndrome but also to those of us who don’t. I thank you for that.

    And holy moly, look how young Henry looks. His cheeks are still chubby. My how they grow!

    God Bless
    Amy SD

  2. wow, i am in awe of God today, how wonderful that He blessed your family with Charlie and He knew how great of an advocate you would be for any child’s life and how many times greater for a child with DS through wonderful little Charlie. To God be the glory.

  3. Loved reading your website…you encourage our family as we have a grandson, Charlie, who is 8 months old and has DS. He is so adorable and such a blessing…can’t imagine life without him. His beautiful twin sister delights to play with his hair and sit on him – they are close and I suspect always will be. I’m so glad they have each other and we have them! Watching them interact and watching my son and his wife raise them, play with them and love them is absolutely thrilling. What dimensions of joy we have already experienced – our biggest fear turned out to be our biggest blessing!

  4. HI libby, again i thank you for the posts. My Jerry too has Downs, and not a single day passes without me appreciating my little boy and what a blessing he has been. TO God be the glory

  5. Libby,
    Thanks for sharing the wonderful pictures of your boys! I’m at the same place you’re at. My son, Chase, is 4 and I’m just so proud of how far he has come. In the beginning, after his birth, we were given such grim information about delays and health issues. We’ve learned that he will do everything the other children do, in his own time. Love does conquer all…

  6. Libby,
    I agree whole heartedly. Down Syndrome pretty much takes a back seat with us as well. Sometimes I get caught comparing but that only serves to reinforce just how limited each of our lives are. I prefer, like you, to cherish the beauty of each person in my family and the joy of our deep relationships to one another and to our creator. When you live to see what will come of each moment, how can you ever be disappointed with life or better yet how could you be more excited to live?

  7. It’s funny how much I thought DS would change my world. And it has. But not in the way I expected. It’s made some things easier: Ainsley never has a problem getting strangers to wave or smile at her. It’s made some things harder: convincing people that Ainsley can do whatever it is that she’s currently refusing to do, because she knows that if she refuses long enough they will just do it for her.

    Fun times! Always a new adventure each day!!

  8. I loved this:

    “This doesn’t mean Down syndrome isn’t on my mind. It ebbs and flows in and out of our daily lives. Sometimes it’s fully present, demanding attention and bringing with it concerns about speech delays, orthotics and the like. Most days it takes a backseat. For this I’m thankful.”

    I feel the same way about my son. He has a form of dwarfism called Cartilage-Hair Hypoplasia. People wonder why I don’t talk about it more or blog about it more. I just don’t think about it all the time in that way. It is who he is and our life is what we do. His accomplishments and failures aren’t a result of a condition but rather decisions and circumstances, divine intervention. Sure, we do things differently but I think of him no different than I think of my other three sons.

    Your boys are adorable and I hope you are often told that you are doing a great job, mom!

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