*flaps hand in rough imitation of cheerful wave*
( Collapse )
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.
It's been a summer, to say the least. Teenage relationship drama and the first steps toward individuation, which I know is a good thing and a sign we're doing parenting right, but Zack is empathetic and wants to help people so of course he latches on to a girl from an abusive background who has serious anger issues. Heaven help us. I'm not discouraging the relationship because I don't want to make it forbidden and thus more alluring, but I am taking steps to keep him safe. Like no unsupervised visits to her place because she lives on a farm, has ready access to a variety of firearms and has expressed a desire to shoot her dogs.
BUT ANYWAY. What I mainly needed to get off my chest, and this is the one place I can talk about it without repercussions, is an exchange going on right now in the county homeschooling group I belong to. There is a mom who is worried because her 13-year-old daughter has expressed an interest in marine biology. She's hoping it's just a phase that her daughter will grow out of because evolution is a lie meant to lead believers down the wrong path. What she really wants is for her daughter to grow up, get married and be a stay-at-home mom who homeschools and then maybe get a "little job" once the kids are raised. I mean, what the fuck. Yes, I'm married and a stay-at-home mom but this isn't necessarily something I ASPIRED to. I don't mind my lifestyle but I enjoyed working and I had different dreams for myself. I couldn't imagine limiting my daughter's future to the "kids and homeschooling" grind if there was something else she was interested in. But I'm keeping my mouth firmly shut because my town is a little town and the other homeschooling moms know I'm a secular homeschooler and I'm kept at arm's length because of it. I'm not going to hijack a thread and be an asshole about their beliefs and their prayer requests that the girl will see the error of her way but I'd love to find this girl and quietly encourage her dreams. And now I understand why, when I was asked about secular curriculum and I replied that secular materials tend to focus on discernment rather than indoctrination, I was met with tight-lipped silence.
Being a secular homeschooler in the Bible Belt is so much fun, y'all.
Just gonna copy/paste a Tumblr post and an email sent to my bestie Kirstin, because I love being back on LJ but I have no mental energy to write anything original right now because massive sugar hangover and general life stress:
(From Tumblr, apologies to anyone who had to read the original whine...)
Yes, it’s Easter and I’m on Tumblr. Huge family celebration an hour away that I can’t get to it because I just had oral surgery and agoraphobia has me in its clutches again. And Easter at my mother-in-law’s house is one of my favorite things in the world with my favorite people in the world and I’m feeling very sorry for myself having to miss it. I spent all day yesterday cooking and baking, took all the dishes for an Easter lunch over to my parents, and then at 10PM discovered I burnt the last batch of dinner rolls. So even with quick proofing, I was up until after 1AM.
Added to this, my mom’s health has taken a sharp downturn and my dad is having some very concerning symptoms that he’s getting checked out this week which completely terrifies me because he is her 24/7 caretaker and guess who is their only other option for errands/driving/housecleaning/self-care.
So yes, I’m sitting at home, pretending not to notice my neighbors having an Easter family reunion under a huge outdoor tent while knitting and browsing Tumblr and feeling pathetic.
(And a follow-up email to Kirstin when I realized there are worse things than spending Easter alone)
My mom is...not well. After a year of refusing to see her cardiologist (she had extreme shortness of breath and fluid retention and she thought her ALLERGIST could help her) she finally made an appointment and it is pretty dire. She has severe aortic regugitation (instead of her heart circulating the blood properly, it all just kind of goes PBLLLLT out the sides of her aortic valve), congestive heart failure with her heart function at 40% and dropping (so not only is most of the oxygenated blood going PBLLLT, her heart isn't doing a good job of getting what's left where it needs to go), an undiagnosed heart attack at some point and a suspected septal defect (big honking hole in her heart between the two chambers). So she is undergoing some very invasive testing in the next few weeks and she is terrified, as anyone would be, and she may be looking at open heart surgery to repair everything if her doctor feels she has a good chance of making it through. Right now he's not calling her chances of surviving the surgery.
Meanwhile my dad can't swallow. Even liquids are starting to be a problem and he chokes on everything. He's lost a lot of weight and when I visited on Easter Saturday, he was so weak he nearly fell. Yet he's trying to handle all the care for my mom and is refusing to see a doctor because it's just his "sinuses." Okay dad, and not a growth in your esophagus or anything? Okay. But they are grown-ass adults and do not take well to coddling or even to gentle suggestions so my role is to keep my mouth shut until the situation goes completely tits-up then I get to come in and mop up. It's fun.
So I'm just trying to concentrate on my own life and taking care of Russ and Zack and the house and etc. but meanwhile there is this low-level stress like a fever just hanging over everything and sucking all the joy out of life.
So that's me, how are you?
In other news, my mom's health is failing and she may need heart surgery if she's strong enough (spoiler alert: she is not strong enough) and I'm still in "I hate everyone" mode so have been avoiding most social media because you know that old saying "she could start a fight in an empty house?" That's exactly where my head is at right now.
--Appointment on Thursday to check out a new monitoring site. It's a freshwater pond in the middle of some scrub wetlands by description (haven't seen it yet) and the property owner is an old friend of mine from high school. The only drawback is her "nature expert" husband wants to tag along with me. I'll let him spout his opinion (which is already wrong since he doesn't realize that as long as the air temperature is above 35 degrees, frogs will be calling and trying to get their sexy game on) but if he keeps quiet while I'm recording, we'll get along just fine. First visit is a site survey, filling out registration paperwork and permission forms and then completing a few test recordings to ensure the least amount of ambient noise at the location where I'll be monitoring.
--Need to find a good handheld compass/temperature gauge. I have a pretty good sense of direction but it's easy to get turned around at night without something to orient me. Also need to check out JetPens for a good waterproof ink pen since the best monitoring conditions are in drizzle or light rain.
(ETA: So far there isn't a decent digital combo altimeter/compass/thermometer to be found in my price range and since I have an iPod Touch and not an iPhone, I can't use a compass app. I'll keep looking. But after doing a few home tests I found out I have a few pens around that will hold up in the rain - a Pilot G2 and a Zebra Z-Grip.)
--STUDY STUDY STUDY. You've been monitoring sites for a year and you still can't tell a cricket frog from a chorus frog with any certainty. It will be a happy day when you pass your certification test and no longer have to submit recordings to the program administrator for verification, even though he's a super nice dude and a lot of fun to talk with. Next certification session is in September. BE READY FOR IT.
Gratuitous pic of a gorgeous Northern Leopard frog. Zack calls them "creeper frogs" because their call sounds like someone knocking on a window and then chuckling, presumably at whatever is it they're viewing through the window. I never misidentify this call.
The horrible, horrible mortgage company who has screwed up every single detail that could possibly be screwed up ever since buying out our previous mortgage company. This time they mailed a letter that read "Oops, we fucked up and sent out the wrong 1098 form two weeks ago, sure hope you haven't filed your taxes yet, haha, our bad." Guess who already filed their taxes. Yes, I wanted to fight the whole company.
Whoever was driving the car plastered with CRUZ WILL SAVE AMERICA, DOWN WITH OBUMMERCARE and the completely superfluous THIS CAR BELONGS TO A REDNECK. You don't say. I bet it was crusty-cap-saggy-jorts guy, I didn't stick around to find out. Glad I stomped his foot.
The sour-faced old lady who parked within a millimeter of me and then had the balls to stand there and shout "watch it" while I was slowly trying to back my car out of its spot. WATCH WHILE I RUN YOU OVER.
I'm staying home the rest of the day.