ReallyGinny (reallyginnyf) wrote,

what's going on

(sorry for another update in the form of a copy/pasted email to my best friend but she's been with me through this whole horrible summer and sometimes I can only find the words when I'm speaking to her)

*flaps hand in rough imitation of cheerful wave*

It was a tough weekend, preceded by a tough week and I'm tired and stressed out but I didn't mean to drop out of contact for so long.  Zack and I have been arguing off and on...mostly on.  And every time I thought we'd smoothed things over, emotions would flare.  Many ugly words were exchanged and a lot of dramatic scenes played out and there was fear on both our parts that we'd done serious, irreparable damage to our relationship.  But I kept reminding myself of the words of a wise friend who told me years ago that a relationship is like a bank account and all the loving, supportive experiences are deposits and hurtful exchanges are withdrawals and the withdrawals don't matter as much as long as you maintain a positive balance.  And then I reminded myself of the words of another wise friend who told me that life is like a pendulum and that right now we're on a downswing but it will soon swing in the opposite direction which is comforting, but on this latest downswing I think the pendulum bob cracked me in the face so even when it swings back the other way, the damage will take some time to heal.

We're all trying to come to terms with Zack's diagnosis.  Russ is pragmatic and calm, Zack is frustrated but hopeful and I'm just a big helpless ball of pain on behalf of my kid.  Zack is realizing he won't be able to overcome his struggles through hard work and sheer force of will; no one has more determination than he does but he has a lifelong neurological condition that can only be managed, not cured.  And this is such a selfish, horrible thought but sometimes I wonder if it would be easier if he looked more disabled?  I can't help but think of a high school friend who has an 18-year-old disabled son.  When you talk to this young man, there is no question that he is dealing with a serious disability.  He has malformed facial features and contractures of his hands and arms and his speech is mostly unintelligible.  And I don't wish that for Zack, I truly don't, but my boy is 6'2", slender and well-built with a mop of curly brown hair, huge brown eyes, a very kind face and just overall a nice-looking dude.  He gets a lot of female attention even at 14.  But then he'll have a meltdown in a noisy crowded place and I'll have to hustle him away.  Or he'll tire out easily when exercising, or he won't be able to tie his shoes when he goes bowling or he'll have to turn down an invitation to ride bikes with friends or he'll flail around while running because of his motor deficiencies.  But he's a normal-looking kid so peers/teachers/adults then attach the labels "lazy" or "clumsy" or "weird" to him and I can't exactly follow along behind him and say "but it's none of that, it's dyspraxia."   And yes, I know you prepare your child for the road, not the road for your child, but this is one hell of a bumpy, rocky road he has to learn to navigate.

We're all trying to adjust to a new normal and I'm trying to learn to be an advocate in the school system to prepare him for his freshman year next year and I have to say that many of my friends, the ones with neurotypical kids, have been spectacularly unhelpful.  When I shared the news with one of my closest friends her first response was, "But you're not going to let this define him, are you?"  Well, gee, would you mind terribly if we let it define him for a little while, while we're trying to decide on and coordinate the proper treatment modalities and therapies and adaptive equipment and educational accomodations?  Give me a break.

Another friend let me know that if we shelter Zack from the world, he'll never learn to overcome his problems. But that's like telling a blind person to put themselves in a visually-stimulating environment and then try really, really hard to see so they can overcome their blindness.  It ain't happening, folks.  Dyspraxia is neurological, not psychological (even if there are psychological components to it).  You can adapt to the condition but you don't overcome it with the power of positive thought.  Right now Zack is sheltered from some environments for his own comfort and protection while he's learning how to manage.  He'll have to face the big, bad world one day but we're in a position to give him a soft landing at the moment and we're going to do that.  We've only had an official diagnosis for a month and we all need a lot of support so I'm not going to kick him out the door quite yet.

And honest to god, Kristin, I will go completely beserk if I hear one more chirpy person telling me "Daniel Radcliffe has dyspraxia and look at him!!" Zack isn't going to be the star of a billion-dollar film franchise so we may need to consider other options but...thank you?  I guess?  The knowledge isn't that comforting to any of us because DR has bags of money and fame to ease his way through any challenges his dyspraxia might bring.  I know it's simply kind-hearted people who are trying to relate to and understand our situation and who are doing their best to be encouraging so I'm not going to start shouting at people, but damn it if I'm not finding it a lonely journey so far.

Some of the loneliness is self-imposed but I have little tolerance for social media right now.  Facebook is nothing but friends and acquaintances with neurotypical kids so it's a newsfeed full of school achievements and internships and select sports teams and academic/athletic scholarships and weddings and dream jobs and travel and those fucking #godisgood and #blessed hashtags.  It would take a much stronger person than I am to smile and be congratulatory while simultaneously trying to wrap my mind around a limiting and life-changing diagnosis.  And Tumblr fandom is toxic and I don't have the energy to deal with grown-ass people losing their minds over ships or fanfic or fanart so I'm avoiding that site, too, even though it used to be fun.  I know in some instances it's a case of "whatever gets you through the day" and I'm not going to shit on anything that makes a person happy and I may very well return to the comforts of a fandom as things settle down but right now it all seems insignificant and pointless.

But through it all, we're okay.  Zack and I had a long, honest talk and despite my hatred for that hashtag, I feel blessed. I have enormous support in Russ, who is completely unflappable and calm and trusts that everything will work out and he loves us both fiercely and without question.  Zack is still the same funny, empathetic, sarcastic and kind-hearted person and dyspraxia won't change any of that as long as he knows we're in it with him.  He talks openly to both of us and even if it's not what I necessarily want to hear, I'm thankful the lines of communication are still open.

As for myself, oh god, I'm so lonely and completely lost and sometimes I feel like I'm living my life behind a one-way mirror and I can observe but not participate. But even at that, I'm happy most days and if not happy, at least I'm not sunk in despair. I read books and I knit silly things and I write letters and putter around the house and talk to my plants and each week I take Zack to two different therapy appointments and two homeschool co-op classes and I try to be a good wife and a good daughter and a good mom and a good friend and a good disability advocate and I try to be kind to myself. We still have family movie nights and game nights and we get out when we can for (quiet) concerts and (low-key) festivals and we find something to laugh about every day.  But if I drop out of sight every once in a while, it's just me trying to reach emotional homestasis when life has drop-kicked me in the teeth again.  Thanks for sticking with me through it.  Love you always.
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