I love to read, and pick up a lot of lines or quotes that stick with me. Some of them fall away as I grow up, some of them stay, and a few of them get more true.
In The Talisman, by Stephen King and Peter Straub, a boy named Jack has pulled Wolf, a werewolf, from his non-technological home world into our 'real world', and they're hitchhiking cross-country. Jack is getting sick and needs to rest, and decides to go to a movie theater, where he can sleep and Wolf can watch the movie. It...doesn't work very well.
I read this when was thirteen, and these lines from that scene always affected me, for the pure pain of bravery not noticed or understood: "Jack would never know of Wolf's heroism in the next few minutes. Wolf did not really know of it himself. He only knew he had to try to stick this nightmare out for Jack's sake."
I often think of them, in the back of my mind, when I wonder about Xander and what he goes through.
We try to help him when we can, try to minimize or lessen what he has to go through that hurts hiim. But we can't, nor really should, make his life completely antiseptic and safe. Life is here, life goes on, and if he doesn't have a chance to get used to things that bother him when he CAN, it will be so much harder for him to do so when he HAS to. Doesn't mean we're going to throw him into a situation we know will be hard for him just because we could - but there will be times he'll have to suffer through.
Of course, there's the word 'suffer' there...an exact choice by me.
In every restaurant we go to, he usually has to cover his ears when he's not eating. The ebb and flow of conversations and noises around him probably combine into a mad rush of sound to him, disjointed and confusing, like trying to get words from a babbling brook or trying to listen to six different radio stations at once. He can handle it - but it doesn't look fun to do so.
I said in another post he has certain parts of songs and TV shows and movies he really likes and would play them over and over, given a chance. There are a few others we know of that are the complete opposite, where he will have to leave the room for a bit if we don't skip over it and come back when it's done, or he gets upset.
Those are, if you will, 'normal' things, things you can plan for and get ready for and get around, usually. When there are new things, they're generally not total surprises, more like 'Oh! Okay, I see that," moments.
But then there's the unexpected times.
It has not been a fun time for Chez Robinson. While I was fighting off pneumonia, apparently a late order of bad karma also came in - all at once. We had a pipe leak outside, flooding the finished basement, making us throw away several bags of ruined stuff and many books too. Had to get an emergency plumber out, they had to dig up the yard, kick off the water,, pretty much anything and everything you can imagine going wrong all at once.
While all this was going on, Xander had some problems. Nothing too huge, but in addition to everything else going on - me being sick, the stress of cleaning up and losing things, the juggling of getting people out to get things fixed, dealing with no water while cleaning up soaked boxes and books - well, at times like those, any smoothness is appreciated. And for whatever reason, Xander just couldn't - we had some fits. Could have been the strangers in the house, or the noise of the backhoe tearing up the yard, or getting little radar-pings from Tracy and me while we dealt with the crud. But it didn't help. And yet, I don't know how much he did take before it got to be too much for him. He could have only lasted five minutes, yet in those three hundred seconds displayed more courage and toughness than a legion of superheroes.
Or when my mom died suddenly. He did really well, dealing with the immediate aftereffects of us having to help get everything ready for the funereal, even coming with us to the funereal home as we picked stuff out - remember,, babysitting is not something that's an option to us. The long travel to her final resting place, a strange hotel, dealing with mine and Tracy's grief and his own, which I mishandled badly. For anyone, this is tough. For him? There is no word, probably - and I don't know if I even want to know a word for it.
Sometimes it's hard to see beyond the frustration of having do things differently, triple-plan everything and be ready for problems. There are times you complain, whine and moan to yourself that, doggone it, this is kinda tough raising an autistic child. And it is - PTSD like a soldier's.
One thing that just as quickly comes to your mind, though, is however tough it is for you, it is infinitely and incomprehensibly harder and worse for your child. Your stress is not to be minimized, but compared to your child, it is minimal. Every day, these kids displays a grace and heroism that no one else can understand, but that a parent can sometimes see if not understand.
When people ask me to list my heroes, I always list my son.
Those of you who can subtract better than I can - which is a pretty good portion of the world - will note I'm doing this blog pretty doggone early in the morning. Those of you who have been regular readers of this blog - first, thanks. Appreciate it. But you have an immediate and pressing question: "Does this mean Xander's sick and you're trying to make the best of it, not to mention another brilliant, poignant and insightful entry?"
No to the first part. Yes to the second.
This time, thankfully, Xander isn't sick. I am. It's nothing hospital serious, but it's a bit more deep than a cold or cough. I'm very prone to pneumonia, and my old friend decided it had been too doggone long and it just HAD to drop in and see me again, so it did.
Luckily, due to his repeated visits, I've learned to recognize the symptoms pretty quickly and hied myself to my doctor. He, perhaps a little unnerved, called me a wee bit psychic on this matter, which if I had had my choice I would have preferred precognition over something more fun - sports scores, stock prices, heck, even the next outcry at the city council meetings. But, no.
Since we caught it early, this latest set has been mildly light, to what I call walking pneumonia. Now, that may not be what it is, I'm not a doctor, but compared to other times, this has been pretty okay to go through. Other times, like the first couple, I was so miserable even when I wasn't doing anything but lying in bed and trying to sleep. Now, I can move, but if I move too much, do too much, try and push it, I start coughing up hunks of stuff from my lungs and running a fever that does make me feel bad, and then I have to rest and get my strength back.
Still and all, even the light version of pneumonia IS pneumonia, with all the yucks and aches and problems. While life goes on and I still have to do things, I've had to adjust my current life to the target of getting things done but not getting things done to the point I get sick. Which, by the way, is not easy for me. I hate just sitting down and doing nothing when forced to, and tend to push it. This annoying trait has granted me a dry socket after my wisdom teeth were removed; several skips, slides and stumbles when recovering from knee surgery; and a couple a relapses in past pneumonia visitations.
For all that - the aches and pains of being sick, the careful calibration of doing just enough while doing something, the insomnia I get when sick on top of my usual insomnia - even after all that re-targeting of everyday life, one piece - the most important piece, but not that tiny little black dot in the middle of the bulls-eye, one that covers the whole target - is KEEP XANDER WELL.
Having a child will do that to you. Even through the worst misery, you take the time to pour out a bottle of water so your child won't drink after you, take steps that a germophobe would consider a bit much to ensure you can't contaminate (and that is the word you think of, a harsh, strong, dangerous word) your child, and take care to love your child from a distance. Because the only thing worse than you getting sick is your child getting sick.
In this, all parents are alike.
With Xander, I take even more extremes. He has been told, often, that any attempt to eat or drink after daddy will result in fast, immediate, painful punishment. Tracy, who managed to get some time off to help out, is to be asked for food and his medicine, not daddy. I hug him carefully, making sure to not breath or, horror, cough on him. Yesterday morning (to you, hopefully. to me it's still this morning) we had to go grocery shopping, because the weekend I rested and we and the cats were running low on food. WE may have been okay, but once the cats run out of food I don't know how long we stay 'co-tenants' to them and become 'protein', so we ran down the street. At one point I saw Xan had some stuff on his cheek, and for a second I did the mom-clean maneuver - lick finger, prepare to swipe...
...and I jerked away from him like my fingertip had transformed into a blowtorch, lit and spitting. I was careful not to worry about it anymore after that.
I know it's paranoid, but there is so much worse with Xander getting sick than me. First off is his possibly suffering with small signs until we notice it. Coughing like I do would be a giveaway, but how about just getting tired? He couldn't tell us about it, and given his sporadic and light sleeping it would be perfectly reasonable to think he's just finally worn down. An easy explanation that ends up being wrong and you end up kicking yourself for later - and that's happened way too many times for me to not be nervous, nor for me to easily forgive myself.
Then once he gets sick, a trip to the doctor. This is not easy. I'm sure on some level he understands what's going on - we explain what will happen and why and how it will help - but he still fights, and who can blame him? For all I know, the feel of a wooden tongue depressor to him is like chewing on sharp splinters, or that gagging that can happen is worse for him - and it's not exactly fun for us. A shot? Name me a child who likes getting a shot in the first place. Because of all this, and more I don't know about, we have to restrain him, hold him down, help out. Dr. Caballero is wonderful and helpful, but Xander makes him sweat.
Now, I've had to help out when I've been sick. I've done it when I had dry sockets from wisdom teeth removal, I've done when I was no longer contagious but still suffering from pneumonia, and I've done it when I had to set my cane down while I was recovering from knee surgery.
Then there's the post-diagnosis. Perhaps keeping him calm and settled, a task harder than washing a fully-clawed cat. Giving him medicine which may or may not taste good to him, which takes a few times to figure out how to bribe, cajole, or force it into him and how to reward him later. Sleeping in shifts, taking his temperature every few hours so we can keep track of his condition - improving? Staying same? Getting worse? Making plans that if something happens - fever above X, vomiting, seizures, what have you - we zip to the hospital right then and there.
When Xander's sick, there is no usual routine, it's round-the-clock monitoring, a total adjustment to our lives and constant concern and worry.
And it didn't feel odd, or wrong, or even unfair. Tiring, yes. But not unusual, or different, or more than we should do.
Because of what Xander goes through, we have to go through more. Parenting has been changed, recalibrated, adjusted to cover this new, wondrous, amazing and fascinating child.
Life is never what you plan. Sometimes you change your aim, something your aim is changed for you, and sometimes the whole target is redone and shifted into something undreamed and unimagined.
For all that recalibration, the target is the same:
A happy child.