Friday, 17 July 2015

Lessons Learned

In the whole grand scheme of things, we are super lucky.

I have a good friend with a daughter with serious medical issues, not the LEAST of which is epilepsy, and every time I see Lori, I am amazed at the grace and courage with which she handles herself. My admiration grows even deeper when viewed in light of my total inability to get my shit together.

In comparison, Squid's epilepsy, which isn't even all that bad as far as epilepsy goes, has had me in an endless loop of react-cope-wait-react-cope-wait for the last 6 months- one that I'm only now beginning to claw my way out of- and any thought of being some sort of stellar, well-put-together mom is long gone.

At heart, I'm a lazy parent. I always have been. Any small issues with our kids were easily handled and generally no worse than a broken bone, missing iPhone or school suspension. I am a PRO at that stuff, and clearly, the success went to my head.

I'm not trying to be self-effacing here- I frigging hate false modesty. I am fully aware that the two older children we have raised are phenomenal people, and that we had a major hand in why they are becoming successful adults, and I am totally taking credit for it. I also understand that if we stick with the same formula, our younger two should be equally awesome someday. (Or not. Either way, I'm already at a 50% success rate, so I've pretty much given up trying.) I'm saying I was lazy because I never had to be anything more than that.

I guess what I'm trying to say is I've learned.

I've learned I am an excellent crisis parent. I held my shit together quite beautifully for all of December and January, and kept (most of) my terrified tears to within a 3:00- 3:15 a.m. time slot. I made jokes with Squid about testing for marshmallows in his brain, I answered some serious questions from him about what if it was a tumor, and should he be scared, and was he going to die, and I came out of all of these conversations with a child who felt better than he did going into it. I organized doctor's appointments, scheduled child care for my own kids and relief care for my dayhome kids, and found the Children's Hospital every time without getting lost.

(Most of the time.)



(That's bullshit. I have to call Jason or Mom to give me directions from Sarcee Trail onwards. Every single time. I just don't get it.)

I learned that once the sprint is done, I suck at the endurance stuff. I don't hold up well to sustained stress. The cracks start showing pretty quickly.

I learned that at heart, I'm a total hippie. I think the human body will tell you what it needs in most cases, and that doctors should be a last resort. I am extremely drug-shy, and have always preferred more natural methods. I think today's kids are over-diagnosed, over-medicated, over-exposed to antibiotics, and, as a result, more susceptible to some really ugly diseases. (Yes, my kids are vaccinated. I'm not an idiot. But I researched the shit out of it, REALLY hoping for a valid reason to decide against it. The problem is, there isn't one.) I thought that seemingly healthy people who go to the doctor (barring cancer, childbirth, or sudden, violent disembowelment) were, well, pussies.

I learned that I had the luxury of thinking this only because my other kids are as healthy as horses.

I learned to change my attitude.

I learned that I am great with facts, and not so much so with gray areas. I was warned that there could be some behavioural side effects with this medication, but if we could push through it for the first few weeks, it would improve after about a month. So I shook it off when Squid threw a mop at Jason or kicked the recycling bin across the kitchen and dining room, or when he was so strung out he was VIBRATING. And the behavioural issues did start to level off after a month or so. Maybe he wasn't as cuddly or smiley or friendly as he was before, but I guess that's to be expected with a pill whose SOLE PURPOSE is to fuck with the way your brain works. The drugs were helping, and I can do anything for onemonththirtydays720hoursI'mcounting if it makes him better. On day 31, I fell apart.

And I learned that with a chronic disorder, there is no 'making him better' and there is no end date. There's just new and changing circumstances and new ways to cope with them. And I need to remember that. Because after a while, he started having these things they call breakthrough seizures, and they upped his dosage, and the bottom fell out. 

Google the phrase 'Keppra rage' if you get a chance. This particular side effect is so bad it has its own NAME.

For a week, the higher dosage worked wonders. The seizures stopped and we didn't see any change behaviourally. He was still a different kid from 2 months prior, but we were getting to know him and starting to learn how to deal with him and what we needed to watch for, and there was a new normal happening. Then overnight, something flipped. The hyperactivity was beyond anything I'd ever seen before. He missed a full 18 days of school in the next 2 months, simply because I physically could not get him there. His newly-found ability to focus disintegrated. Each time he overreacted to something, he was utterly incapable of shutting it off, and his rage escalated to unreal heights. He KNEW he was out of control, and was basically a bystander for the entire show. Then after the blowouts, he became so upset at his behaviour he'd say awful, awful things- about hating himself, and how our family should hate him too, and that he wished he was dead. We were doing everything we could to derail any sort of display of emotion before it spiralled out of control, and were living in terror that his lack of judgement would cause him either to hurt himself unintentionally ("I bet you I can beat that car across the road."), or intentionally (we won't go there, but we imagined it, in vivid, living colour).

I learned that my pride and my persistence mean that I usually wait too long to admit defeat. And I learned that since I am the primary caregiver, Jason defers to me on a lot of decisions, and sometimes this not a good thing. We were literally surviving day to day, trying to give the medication a chance to work, and some time for the side effects to wear off, and it wasn't until a blowout on an outing that left not only myself, a mom of 4 and seasoned dayhome provider, but also two OTHER moms and dayhome providers shaken and in tears, that I was shocked to realize how LONG we'd been trying to push through it, hoping to strike a happy balance between seizures and emotional uproar and new (and possibly worse) medication. I realized that I'd gone from a normal, relatively strict parent to someone who was now picking her battles to the point of ridiculousness. We had gone from 'don't EVER hit your mom' to 'it depends on how hard and if he's just flailing or actually throwing a punch'.

I learned what people mean when they use the phrase 'quality of life'. 

I learned that the neurologist knows what she's doing, and that she should be my first resource, not my last.

I learned that I rely a lot on 'fake it till you make it', and just because I try to minimize problems does not mean the problem doesn't exist. This medication IS scary. The side effects AREN'T great. It COULD damage his liver. He COULD get an infection because these meds DO lower your white blood cell count. Heart murmurs CAN cause problems in epileptics. Sticking my head in the sand won't make it go away. But being cautiously aware of the risks will mitigate them. Waffling on the 'have to wear a life jacket every time we're in the water lest you have a seizure and drown' issue, and making different rules depending on the depth of the water or his proximity to me or whether I can give him my undivided attention isn't going to make 'maybe you'll be the only one of your friends who can't get their driver's licence' any easier. Neither issue is negotiable, and both will get him just as dead if things go sideways. Giving in so he won't feel embarrassed in front of his friends won't make one bit of difference. I was so worried about him being scared or ashamed or developing poor-me syndrome or the epilepsy becoming an excuse that I forgot that it IS an actual, real problem, and he DOES have a right to be nervous or scared or pissed off. And I learned that maybe I need to relax a bit and just let him have these feelings, and then maybe they won't build until he explodes.

So I learned to backtrack.  And we started again at 'the universe is against me' and are working forward to 'this is an inconvenience, but it doesn't define me' without skipping any steps this time around.

I learned that Pavlov's dogs have NOTHING on Jason and I. The alarms on our phones have been set for every 12 hours since January 14th, so we can give Squid his pills, and if we shut them off when we are distracted, or are camping and our phones die, we occasionally forget his medication till 4 or so hours later, at which point it's too late to take it, anyway. We learned to scrap the alarm system altogether. And we've learned to double check each other incessantly.

We've learned to start every phone call to each other with the words "Everything is ok", just because sometimes it's not.

I learned that my family is always here, whether it be 'Facebook and email across the country' here, or 'we live 10 blocks away' here. I learned that with the right motivation, my mom runs a damn good dayhome. I learned that my sister isn't a total tool and actually has some very good ideas and suggestions... sometimes. ;)

I learned that my chosen family, saints that they are, will watch me very carefully as I have a nervous breakdown, but won't suggest that that's what's happening till I'm ready to admit it myself (or till I send a hysterical text or break down sobbing in their kitchens). I learned that they know us well enough that our get well soon card was constructed not of cardstock and platitudes, but of bottles of our favorite booze and comfy clothing. 

I learned my close friends and dayhome mommies (who already keep me sane every day) wouldn't judge if I was miserable or overly 'on' in an attempt to keep it together, and were people with whom I could just be me. And I learned which ones make their own wine.

I learned to laugh, because when someone gives the epileptic kid a strobe light at a ball game, or when he loses his medic alert bracelet because he's taken it off and is throwing it and diving for it at Sikome Lake, but can't reach it because of the stupid life jacket he wears for the same reason he wears the bracelet, that's just funny.

But most of all, I've learned how fluid I need to be. Change happens, sometimes for the good, sometimes not so much, and you don't get to draw a line under something and be done with it. I will never feel comfortable with Squid's epilepsy, or with anything outside of my control, but I am better at it than I was last year, which makes me a better person than I was last year, which in turn means I'm a better mom than I was last year. I guess there's something to be said for that.

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