Clouds, May 2010

Clouds, May 2010

Saturday, October 1, 2022

I don't know what I did to deserve you. 

You were perfect from birth-- big, sweet face... a large, healthy baby... proportionate with beautiful features. Your eyes-- so new to the world that all of your firsts were yet to come-- opened at the subtle sound of a crinkle from a wrapped pacifier, when they took your very first picture at the hospital. Eyes, ears, fingers, toes... everything as it's supposed to be. All of your newborn senses seemingly just as they should be. We had the luxury of welcoming you into the world on our own terms. The lengths that people have to go sometimes to have a family... the amount they have to endure... the process of starting a family is hardly simple for countless parents. And we did so when we were ready, & it was as simple as that. And I got to experience pregnancy, & to carry you full term. (Well, you were a couple weeks early but that was a blessing at your rate of growth.) 

And I have to add you were beyond photogenic... from infancy, to toddlerhood, & through your childhood years... not a single awkward stage. (You're still photogenic but the difference now is that you like to make facial expressions that sort of get in the way of that.) But you were/ are a gorgeous kid, even before & after your surgery to correct the exotropia. Even your hair, by the way-- which very few truly know how amazing it is. Some see it after a haircut when it's quite short, or a tiny bit peeking out from under one of your baseball hats (that you rarely like to remove from your head). But the natural texture & color in the light is something that not many get to see. We've watched you mature from when those big, wide curls were a golden, strawberry blonde until around 4 years old... & transitioning from more golden to more brown over the next couple of years... & even now at 17 the highlights from your baby years are still there when the sun gets to see your beautiful brown hair.

Handsome young man you are. You must be a living, breathing example of where the saying, "a smile that lights up your face" comes from. You have that natural twinkle... that pure, unfiltered smile... & those innocent, curious eyes. Even when that fragile x gene tries to take over & you are heightened as hell, your eyes have never matched your anger. Through the awful words, the angry stance, the clenched hands, & the frustrated, snarling mouth... your eyes look like you are fighting so, so hard. My own eyes well up just thinking about it. Heartbreaking. Tonight was rough. And when Dad got home you told him "she was fine" (addressing our new dog) & that you were a little coo-coo, you called it. Hayden, buddy-- I know you understand enough to know that you have a really difficult time sometimes, & from a pretty young age you were aware of a developmental gap between yourself & your same-age peers. But of course with all of your behavioral & constant sensory challenges, the genetic intellectual disability creates a very unfair confusion for you. 

None of this is your fault. And these genetics have really made themselves known lately. The amount of times I have had to apologize to strangers in recent weeks--- (who are also innocent & confused--) is really starting to take its toll. A couple weeks ago it was waiting in line to pay for something & name-calling everyone around us. Then there are too many days to mention when you threaten other cars on the road because you don't like the way they're driving.... around us, or near us... that person needs to get out of our way... another person needs to stop following us... the next car over at the light is being a moron... me at the wheel with my anxiety heightened because when you put your hands together in the shape of a gun & point towards someone, I imagine my worst fears. How I wish I could build us our very own road every time we need to get from here to there, & back home again. 

And I can't say any of this to you. Not in the way I'm saying it here. I can't tell you the new neighbors on our street have already gotten our attention from your behaviors, too. We can hardly ignore these situations & we can't just expect strangers to blindly understand. But trying to tell people you really are sweet & they are not in any danger... it's not easy. You're a young man who looks like nothing should be different. But the explanations get tiring. The fragile x days interrupting, changing, or altogether preventing our plans... that gets tiring, too. And sometimes sad. And sometimes things are great for a long stretch of time & other times they're as they are right now. Definitely not great. 

My Hayden. Those are the times when I unfairly think to myself, for completely different reasons, what did I do to deserve you. Which makes zero sense because you're just trying to live with the hand you were dealt. The amount of guilt I feel when that self pity rears its ugly head, feels worse than the self pity. We know these behaviors are a phase & we've survived them before, but they will likely come & go throughout the lifespan. And I wish I could tell you how I am so sorry for that. I am so sorry for all of us.

 I know living with fragile x is all you have ever known. You don't know this life any differently. The way that fragile x challenges you & fights you is not from a loss of function... it has always been something you were forced to function with.  And even though I experience the brunt of your behaviors more than anyone else when you are at your "worst", you also know that no matter what I will never not be your mom. At the end of the day, regardless just how bad the day may be, I will never not be your mom. And when you have that much trust in someone, I think you don't know where you end & I begin. And if in any of your heightened moments I get overwhelmed in return, at the end of day you would never not be my son. You know, the way a neurotypical person your age might tell their parents they denounce them. Not you-- your love for us is unconditional.  And I am sure my heart is not nearly as pure as yours, yet I was still chosen to be your mom. 

And then I think about that, & once again for completely different reasons I don't know what I did to deserve you. 





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