Clouds, May 2010

Clouds, May 2010

Saturday, March 11, 2017

air bubble

"Sometimes the world can feel like a room that's filling up with water. And for me to be able to think of a joke is like an air bubble. And I can take the oxygen I get into my lungs and it can carry me forward. Things can be overwhelming, and scary, and hurtful but thankfully my brain can de-scramble things and form a joke. Just for one second things slow and I can win... and it's so personal and it's something I'm so grateful for."


This is a quote from a comedian (believe it or not) & writer named Neal Brennan who has absolutely nothing to do with fragile x whatsoever, or with anything directly related to what I'm writing about. But I happened to just watch his performance on Netflix-- (which is *not* kid- or family-friendly, FYI--) & the perspective resonated with me deeply. Because when my world feels suffocating... for me... writing is my oxygen. And that's part of what has been so difficult because I've had an endless amount to say, & couldn't really communicate any of it.

The first, worst day of my life was November 20-something in 2006. That's when we first heard about fragile x. Obviously now having 10 1/2 years worth of time to let that simmer, I would not say that fragile x is the worst thing in the world. But at that time I had no context except that my beautiful, healthy boy suddenly had a very serious & very scary diagnosis.

The second worst day was near the end of the summer in 2008, when Hayden had eye surgery on both of his eyes. Over the next eight years we certainly had our share of difficulties, but prior to December of 2016 nothing quite matched those two days. Until this school year when Hayden was suspended, twice. The first time was in mid-December for five days, & the second suspension of his academic career to-date was mid-January (2017) for three days. (Not sharing anything that people in school didn't already notice.)

Most of what needed to be said has already been said, in a very diplomatic way to all of the appropriate people. So I am not going to rattle off at the mouth & smear my own personal blog with defamation-- of anyone, or myself for that matter. That is not who I am. What I will offer, in summary, is that time away from school will not change any child's fragile x behaviors. And to be honest Hayden doesn't even understand the concept of being suspended. One day when I am ready perhaps I will share the aftermath of his confusion & exactly how that manifested itself in his fragile x brain. I can tell you there were moments I didn't recognize my own son.

And if it weren't for my husband, my parents, & my sister I can promise you I would not have been emotionally strong enough to survive.

Very long story short
 Hayden needs to be in an environment in which he will be supported the same way we observed all the years prior to this school year. And very soon he will be. But while that is somewhat of a relief, the fact is we spent the greater part of the previous school year preparing Hayden for some place where we thought he would be for the next four. So I do sort of feel like I am suffocating right now... having found ourselves faced with a transition that we never would have imagined.

Obviously school decisions are very personal because they involve children, & nothing is more precious to any parent than their own child. So bottom line Hayden needs to be in a learning environment that is staffed to best meet his needs, & allow him to thrive as we've seen in the past. I know there are many other families with one or more children who go to school out of district-- Hayden is not the first & he will not be the last. But whenever I heard of in-district students attending school elsewhere, I just couldn't relate & I thought it was so unfortunate. I thought how could other families have missed out on the same level of reciprocal support that we experienced. My wish would be that everyone had an opportunity to benefit the same way we had, because quite simply it was a relationship worthy of envy. So I'd be lying if I didn't say that as of late, I am somewhat heartbroken.

But at the end of the day we are not moving, this is still our community, & the only place that Hayden has ever called home. Therefore I have no intentions of leaning back on my continued support of the school district that nurtured him through three years of preschool, then kindergarten, & beyond. Despite the unprecedented level of challenges that surfaced in middle school this year, 
that doesn't undo all the support we had in the past & hope to achieve again one day in the future.

On that note, 
I expect that the coming weeks & perhaps months will continue to be a trying time for my family. For now we are taking this one step at a time & doing our best to help prepare Hayden. We told him about his acceptance into the new school in a very congratulatory kind of way, so that he understands he ought to be proud. We even took him out to dinner at a car-themed restaurant to celebrate. 



Complete with a sparkler in a piece of cornbread (in lieu of having a plain doughnut on hand, for our non-cake, non-ice cream eating guy)



So if you see him this week, please feel free to offer him a simple congratulations & do not hesitate to tell him that you know he will do well. This has been a very confusing several months & Hayden knows it's not the end of the school year so none of this is going to make sense to him at first. And unfortunately we can't wave a magic wand & make him eager to go some place unfamiliar. The truth is the day he visited the other school he already voiced concern about no one there knowing him. So after I said every single reassuring thing I could possibly think of, I realized maybe I just need to help him see the bigger picture. That even though the actual building he learns in is going to change, his community is not.

For every faculty member who loved & nurtured our son as if he was their own, & for every fellow parent who never hesitated to lend their ear & their unwavering support, the depth of gratitude we feel can not be explained.

The end of every calendar year & the beginning of the next, is usually a favorite time filled with so much love & laughter-- from Hanukkah, to Christmas, New Year's, & even our wedding anniversary-- it's one celebration after the next. This year (politics aside), there was an extra dark veil over everything. Even a month later during a winter weekend getaway to celebrate my Dad's 70th with family, there was still a heaviness in my heart. Because eight days, consecutive or not, of watching your healthy able-child wake up in the morning & then not being able to send them off to school... leaves you with a sickening feeling.


It is time now to work towards adding the shine back into our lives. It may take a while but any thorough repair is better in the long run than a quick fix-- just ask Hayden. He has certainly watched enough youtube videos of mechanics to understand that logic!


And any moment that I feel like the world is a room filling up with water, luckily the smile on this kid's face is the only air bubble I need. 




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