Our story: 10 years after receiving the diagnosis

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James, Parker, & Juliet, 2015

This past Saturday, we had an opportunity to see what a difference a decade makes from the day you receive the diagnosis that your child has Down syndrome. 

This past Saturday, Jim McDonnell and his wife Mynique threw a birthday party to celebrate their oldest child, Parker, turning 10. It was quite a celebration.

Jim and Mynique have regularly played the hosts with the mosts over the years, holding cookouts at their house to maintain friendships with those parents and children from when Parker was born. Fortunately, my family is on this invite list. Indeed, we were one of the first in this circle of friends.

This is because like our experience with my daughter Juliet, Parker’s parents learned he had Down syndrome when he was born. Parker’s aunt and I worked at the same law firm, and she connected Jim and I. Soon, my wife and I were visiting Jim and Mynique in their home, holding Parker, and sharing what we had learned up to that time, with Juliet being six months older than Parker.

In those very early days, every parent wonders what this life holds for them. Other parents have shared their concerns of when/if their child would walk, talk, run, or play with other children. It’s just such a time of the unknown and every concern imaginable can cross a parents’ mind. This is not to say that these were Jim or Mynique’s concerns, but they are common concerns.

Fast forward ten years to the scene this past Saturday and you will see how those concerns can make us parents shake our heads almost in disbelief.

In disbelief because at this party–held at one of those jump-house indoor places–you saw boys and girls with Down syndrome ranging in ages from six to ten running, climbing, shooting baskets, scaling a ladder to then slide down a huge slide, and talking, laughing, and carrying on with each other and the siblings without Down syndrome.

I don’t know how many others took a moment to take it in–because this really is just the life we’re all used to at this point–but I sure did.

I remember just five years ago when I would have been moving through the same obstacle course to help Juliet wind her way through the tubes and slides–her mother ever watchful, noticing every move to make sure Juliet didn’t take a tumble. Now, five years later, her mother went out with her girlfriends to a nightclub while I barely knew where Juliet or James were throughout the whole party.

Now lest I be criticized for selling an image of Down syndrome that is all rainbows and unicorns, this is not to say each of these kids have not faced their own challenges. Juliet is unfortunately in what seems to be an every-other-year down cycle at school; another little girl had to travel to a specialist to disconnect a tethered spinal cord; some of the other kids have behavior issues that are being addressed; and Parker has received special instruction and hearing aids to minimize the effects of congenital hearing loss.

But, even listing those conditions would ignore that Juliet’s brother James had a down year at school last year and had an MRI as an infant because of a possible tethered cord; I spoke with a mom there who would be a teacher for a close family member of mine who is attending the mom’s school for children with behavioral issues (and this family member only has 46 chromosomes); and during the time for pizza and cake, I saw a fellow father sign to his daughter some words, not because his daughter was hearing impaired, but because she had learned sign language as a child and that is a very effective means of communicating across a loud room.

So, some of the same challenges faced by those children with Down syndrome have been faced by their siblings and family members without Down syndrome.

This group of parents used to meet once a month at Down Syndrome of Louisville (DSL) when our children were just babies. We would sit in a circle and exchange tips on therapies and share concerns. Then, our children attended weekly group developmental intervention therapy classes, readying them for preschool and kindergarten. Now, they attend school-age programming once a month.

Some receive instruction in classrooms named after Juliet and another for Parker, as both Jim and I raised enough during DSL’s capital campaign to receive those designations. And, some of the parents attended board meetings when I was a fellow board member and then Board President, and now others attend those same meetings with Jim as Board President.

None of this–absolutely none of this–could’ve been envisioned when Juliet and Parker were born 10 years ago.

At that time, on balance, the concerns outweighed the dreams, at least for me. I worried about Juliet meeting developmental milestones as a child, thriving in school, having true friends. I couldn’t see that Juliet would introduce me into an entire circle of friends I probably would have never met otherwise, or that those friends would be some of the strongest friendships because they were forged during times of trials with each of us supporting the other.

And, I couldn’t have envisioned that it would be my son who chose to play with Parker almost the entire evening and on the ride home, say more than once:

Parker’s awesome.

Indeed he is.

Happy birthday, Parker.

What will the next 10 years hold for all of us?

Comments

  1. Beautiful. THANK YOU. Good perspective for us younger kids and maybe new parents even!

    What a LOOOONG, strange trip it’s been. –Grateful Dead

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