Clouds, May 2010

Clouds, May 2010

Wednesday, November 23, 2016

X YEARS

This month marks a milestone that I knew nothing about for the first seventeen months of parenthood. Ten years ago in November of 2006, our expectations would be changed forever & a diagnosis meant our lives would never be the same. 




I do (but don't) wish I had a picture of the script that the pediatric neurologist wrote, which was filled from edge-to-edge with the names & codes for the number of different tests that the lab would need to run with my child's blood samples. We all knew Hayden had global developmental delays but none of us knew why. 

Everything from that year ended up in a binder-- assessments, evaluations, appointment notes, & so forth. Out of curiosity I recently flipped through it to count how many different clinic, hospital, or other logos I could find on the various letterhead. Post-diagnosis, there were more than twenty in the first year alone. 


I am not thankful for the fragile x gene itself, & what that means for us on a day-to-day (or sometimes hour-to-hour) basis. I am not thankful for what this gene means for my son & his quality of life which unbeknownst to us was compromised before he even opened his eyes for the very first time. And for those who have walked in similar shoes you will understand when I say I didn't want to be welcomed to Holland in any sort of figurative sense & the tulips are not going to make it better. I still go through small phases of mourning & I know I always will.

I am not thankful for fragile x syndrome because I know how aware Hayden is of the growing developmental gap between himself & his peers. I hate that this gene mutation forces his toughest moments to be on display for everyone to witness, because the biology of what is going on inside his body is stronger than his ability to fight it. The absolute worst behaviors steal the very best of him & this breaks my heart, because he is actually one of the strongest people I know. His strength is evident in his accomplishments, the genuineness of his smile & the tenacity in his eyes. So no, I am not thankful for fragile x interfering with that.

But I will say something else. After a decade of all this sinking in, & some hefty doses of reality that I am not always thankful for, we have also had some strong doses of gratitude along the way. Ten years, ten examples:


Many who have worked directly with Hayden at some point or another, are truly second to none. In a world where there are way more patients than there are providers, & the number of retiring experts is rarely met by adequate graduates to fill their shoes... somehow we have been paired with a number of people who are worth their weight in gold.

Often these incredible people who have been a part of Hayden's program in the past by assignment, also remain a part of his life moving forward. By choice.

And speaking of moving forward, it feels really good having a truly incredible charity to rally around.

Especially such a foundation that turns opportunity into empowerment by offering mutual support annually. 


Speaking of advocacy & all the other necessary roles which define parenting a child with special needs... it's not the worst thing in the world to discover you're really good at something. Even more so at a time in your life when you certainly did not anticipate such profound learning.

And despite the moments when you want to sit in a corner & sob, deep down you know you kick ass when it counts.

It's not about the lab results, even though a diagnosis is responsible for introducing most of us. It's the unparalleled community dedication that holds everyone together.

The opportunity to build strength out of something that is literally labeled fragile.

We don't overlook anything. Detail oriented? Yes. (You have no idea.) But what I really mean is that we inevitably appreciate successes more than we possibly could have if our child didn't have to work so tirelessly. I know what it's like to damn near burst with pride over each achievement & the feeling is indescribable.
And the very best dose of gratitude... the select ones (outside of the fragile x community) who DO see your kid the way you do. They respect him with all of his differences. They admire him for his determination. And they're grateful Hayden is a part of their life. But most importantly they make sure he is a part of their life





I am not thankful for fragile x but that gene will never have enough power to break my gratitude when & where it counts. 

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