Clouds, May 2010

Clouds, May 2010

Tuesday, May 24, 2011


I didn't want anything to do with Fragile X when I learned about it. 

When H was diagnosed, we had to schedule our sit-down chat with the pediatric neurologist. It was late-November, just after my 31st birthday. 

Both my parents and Dan's parents came to the house to babysit Hayden that night-- not that he needed all four of them (although some days it does take a village). But they knew we'd come home with information to share. 

During our appointment, we let the neuro do all the talking. I am pretty sure I only asked one question-- if this diagnosis would affect Hayden's physical health. The neuro answered with something along the lines of, "there is no increase in hospitalization associated with Fragile X Syndrome." 

Not how I would have worded it, but O.K. 

I don't remember how long we were there, but I do remember just sitting and taking notes. And I remember not being able to answer any of Dan's questions during the (thankfully short) drive home. Though, they may have been rhetorical. 

Once we got home I felt surprisingly anxious and relieved to stand up, and read my notes. (Thankfully Hayden was already asleep-- he's very perceptive of people's reactions.) It was as if those words were literally being projected off of me, so I wouldn't have to sit there and absorb all of the overwhelming emotions associated with it. 

I barely looked up. I couldn't get the words off of me, I mean out of me, fast enough. (But in my mind, I was passing the information so I would not have to hold onto it.)

Anytime that Dan & I were in the presence of other people with children with special needs, or even people who are specifically part of the FX community, instead of feeling relieved we were a little bit uncomfortable. We almost didn't want to have something in common with them.

I know that sounds like a horrible admission, but it stemmed from the significance of the diagnosis. It was unthinkable. 

And I write that in the past tense, because now things are different. We can see beyond the fog and we are living the most privileged life of being Hayden's parents. And we love that we can share our blessedness and our challenges with people who can actually empathize.

I want to thank the community of people who are affected by Fragile X Syndrome and I can't even think of a single word in the English language that encompasses the gratitude + understanding (without judgement) + kinship + positivity + hope... all in one.

I love the word "support" now. I see it, and I see the word "UP". With two p's... UPP!

Embracing the support will lift your spirits and raise your own personal awareness in a way that many other people don't even realize they're missing out on. 

Hayden never ceases to amaze us with his effortless smile, and charismatic personality. 

The only thing that overwhelms me the surprise in knowing that the very person I was so concerned with supporting, is the one who has done just that FOR ME.

Hayden is, and will always be, my UPP.

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