Tuesday, 18 August 2015

My Friend

(Written at the request of said friend.....)

I have an amazing, brave, beautiful friend who was diagnosed with alopecia in 1988. For those not in the know, alopecia is an autoimmune disease in which your immune system mistakenly starts to attack your hair follicles.

She was originally diagnosed with Alopecia Areata in 1988, in which her hair was falling out in patches or circles, but a few years later, developed Alopecia Totalis and lost all the hair on her head. In the last 8 years, it has progressed to Alopecia Universalis, which means that her entire body is affected, down to the last eyelash or arm hair.

There is so, so much more to her than her hair, of course- her wicked sense of humor, generous spirit, and incredible smile are so powerful that were she to take off the wig, you'd barely bat an eye.

But women, from childhood onwards, see our hair as our crowning glory; central to our look, our style, even our identity. Alopecia is an incredibly devastating disease, and it can be so hard to come to terms with it.

Henna Heals helps women do just that. It started as a small organization in Toronto, and has since become a worldwide network of artists creating henna crowns to help women cope with hair loss due to alopecia, cancer treatment, and other diseases.

My friend got her crown yesterday. When I saw the picture, my heart sang. The incredible art, the love that went into it, and the smile on her face brought me to tears.

Not everyone knows she has alopecia- she's never been 100% comfortable discussing it, and there is only a select group of people who have seen her without her hair. Part of her also worries about embarrassing anyone by 'going public'. But with the help of henna artist Reeshma Premji, and armed with the knowledge that today's world is about embracing our differences and doing what is best for you without being judged, she's doing it now.

She was beautiful last week.

She was lovely yesterday. 

But today, Sherry is exquisite.

And I am so, so proud of her.





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.)

(Sometimes.)

(Occasionally.)

(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.

















Tuesday, 10 February 2015

An Ode To Sanity

Disclaimer: Please don't get offended because you think I am making fun of mental illness. I'm not. That's not what this blog is about, but there's always someone who gets pissed off at everything they see on the internet. If you MUST decide that I'm being disrespectful, please, feel free to get angry and send nasty comments. I will read them all, and eventually publish most of them. So if you're going to get mad, please make it as caps-locked/misspelled/badly-punctuated/completely irrational as possible. I need fodder for a future blog.

So, I'm on Facebook today, and one of my friends has posted the following status:

Just got a phone call from the mental health ward (it was a hospital phone number, as well i heard a page for someone to return back to the ward in the dack ground) he called because my number is an x and he was rather insistant on knowing what i was doing.

And all I could think was,

"That is AWESOME!"


That guy is super on the ball. I notice the shape of people's phone numbers ALL the time, but it's never occurred to me to actually DIAL them! That's like a whole new level of awesome!

And then it occurred to me that immediately figuring out the shape every time you take down a phone number might not actually be normal behavior. In fact, the more I think about it, the more not normal it sounds.

And that started me thinking....... If I think he's normal, and he's in the mental health ward, is it possible there are other things I do that are not entirely within the boundaries of 'normal'?

Since that is clearly ridiculous, I have decided today's blog will be about the totally normal shit I do all the time.

First of all, to expand on the phone number thing, I worry about people whose phone numbers are the wrong shape. I have absolutely no proof, not a shred of anecdotal evidence, and have never had my suspicions justified even by accident or coincidence, but it's awfully hard to trust someone who hides a pentagram in their phone number. I don't give them copies of my house keys or let them babysit (and cook and devour) my kids. It's always better to be safe than sorry.

I have the same problem with PIN numbers. I might be the easiest person in the world to steal from, as all the PIN numbers on all our bank cards and online accounts have to be a part of a (reasonably complicated- I'm crazy, not stupid) repeating pattern. When it's time to change the PIN, on to the next I go. If anyone ever figures it out, they will have total and unending access to all eleven dollars in our bank account, and we will be destitute. But I can't change the way I do it, because then ATM's will stress me out, and every grocery purchase will be slightly tainted.

Have you ever had someone knock on your door and drop by unannounced? (Which, by the way, IS NOT COOL- people who like order do NOT like being surprised. We prefer to schedule everything. EVERYTHING. Like even sex). If and when this happens, you can totally clean up your house in 18 seconds or less. Just put everything at right angles.

Thanks to millions of years of evolution by natural selection, the human body has adapted so that the left hemisphere of the brain is the more dominant in unfamiliar or stressful situations. The left brain is the 'logic' side of the brain, and when it takes over, it causes us to respond more favorably to order than disorder. This means that even if the object at right angles on the coffee table is a stack of books taller than you, your guest will see it, their left brain will take over, and they will interpret the space as 'clean'.* (see footnote)

It doesn't matter how much crap you have on the kitchen table. Just arrange it the way I want you to, and we'll all be much happier.

It extends to other things, as well.

I spend an inordinate amount of time making sure my eyebrows aren't all messed up. It drives me crazy to talk to someone with messy eyebrows. The sheer bedlam of it makes me cringe. I can actually feel it when my eyebrows are messed up. It bugs the crap out of me. And I assume that is all you can see while you're talking to me, because, quite frankly, if your eyebrows are all scribbly, it's all I can see while I'm talking to you. My best friends know this, and have been known to spend hours just glancing at me with messed up eyebrows and watching me compulsively fix my own. It's cruel, really.

We bought a trailer this year, which has solved one of my biggest issues. OTHER PEOPLE SHOWER GERMS. Have you ever been at a campground or in a hotel and you're completely clean and almost done your shower, and you accidentally slip a bit and touch the wall? Am I the only one who then needs to start the whole process over again so that I can get the unknown DNA off my skin? I can't be.

A few years ago, we were camping with our best friends and friends of theirs that we didn't know as well, and I went to have a shower the one afternoon. Through a series of mishaps caused by a cloth shower curtain and a strong breeze every time someone opened the shower room door, I had to have 4 consecutive showers. I was literally in the shower for almost an hour. And when I came back, the friends of the best friends wanted to know what had taken me so long. When I told them I got caught in a shower germ feedback loop, they looked confused. No one else even batted an eye. It's an actual thing.

There's lots of other totally normal shit I do throughout the course of my day, but if I told you about all of it at once, you'd think I was a nut job, so I will keep it to just these few.

So thank you, strange man with an excessive amount of freedom and the ability to make outside calls, thank you.

You have reminded me that I'm stark, raving, sane.




*This may or may not be true- when I want to convince someone I'm right, I am not above completely making up all sorts of bullshit statistics.






Wednesday, 4 February 2015

Soaring

Can we just talk for a moment about uncertainty?

Every year, Liz, who is into EVERYTHING, goes on a trip somewhere. Traveling is her thing. Someday, she  plans to do it all on her own, but right now, her trips are through school, or youth group, or camp, or whatever.

For legal reasons, every time a child under 18 goes on an overnight trip, the Calgary Board of Education requires parents to attend an information meeting to cover the itinerary, risks, waivers, rules, etc.

Every time I have been to one of these meetings, it is being run by a teacher with a plan. They have written an info package containing all the required information. It is the same info package as last year, with the dates and locations changedThey have agonized over this info package. It covers every possible eventuality. They print it out. They pass around copies to every parent who signs in. They then READ the info package aloud to 75 parents in a cramped band room.

It is a brilliant, foolproof system.

But it breaks down at the end.

They have to open the floor to questions, you see.

And every single time, Helicopter Mom "X" (There's one at every meeting. All schools have them- if you don't know who yours is, it's you. If that's the case, read the following closely) stands up and looks down at her list of questions. Her daughter, skinny and pasty and timid, who has been dragged to this meeting against her will (she doesn't have to be there, but mom likes to cover all her bases), cringes beside her.

"My Suzie gets anxious and likes to check in with us every night. Is she allowed to bring her cell phone?"

Are you sure SHE'S the anxious one?

"What if she doesn't like the people she's supposed to room with?"

She's 16. She should probably start practicing playing nicely with others.

"Gravy gives her hives. Does she HAVE to eat poutine while they're in Quebec?"

Yes. It's all they serve there. Be glad she's not going to Boston, what with all those beans.

"Will the kids have supervisors with them at all times?"

They probably let them pee alone.

"She gets cranky if she's not in bed by 9."

Riiiiiiiiiiiiiiiight.

"You say in the package that I should send between $10 and $30 a day for food while they're in Whistler. But what's better? $10? Or $30? Should I split the difference at $20?"

Figure out what your kid will eat and multiply by three. Or don't. I'm sending 7 bucks and a map to all the really good dumpsters.

"She gets headaches- can she bring her Advil? Will someone hold onto it for her and measure it out into the medicine dropper and squirt it into her mouth for her?"

Are you sure this is the right class for her? Wouldn't she be more comfortable in, say, remedial home economics? Something with a bit of a slower pace?

And the information night, which should have taken 45 minutes, caps out at TWO. AND. A QUARTER. HOURS.

Incidentally, when one of the students does get sent home from London, it's never my kid.  It's Suzie, who has been arrested in an after hours club doing belly shots off a drag queen.

Her first taste of freedom has gone right to her head and she has lost her shit entirely. She's like the uncut version of Girls Gone Wild. Her plain beige no-nonsense bra came off at Heathrow Airport and no one has seen it since. She has a brand-new 10x14 inch tattoo of the Union Jack between her shoulder blades, and a piercing in her nose. She knows the British street terms for the good party drugs, and has been all lit up on Adam since the Back Dex ran out.

Seriously. Our children are in high school. I understand that we want to minimize the risks, but at some point, we have to trust that the people supervising them know what they're doing, and our kids need to start learning to use their judgement. And we need to understand that not everything is an emergency.

Would I trust my four year old to wander the streets of old Quebec with minimal supervision? Probably not. Let the 9 year old go white water rafting in Panama? Unlikely. 
But you need perspective. If 16 year old Suzie wants a frigging aspirin, let her take it. If you can't trust her to count to 2 instead of to 250 extra strength Tylenol, she probably shouldn't be going on the trip. You have bigger problems.

Which bring me to tonight's meeting. Not the regular information meeting, which will be happening closer to the trip, but a SPECIAL meeting.

I got this email the other day:

Important Meeting Notice for Music Student Families:
The Calgary Board of Education has called a mandatory emergency meeting for all parents and guardians of students travelling to England with the music tour in April.  The CBE would like to gauge parents’ and guardians’ feelings and concerns on perceived risks of travelling to England given recent events.

                    MEETING DETAILS: Date:  Wednesday February 4 2015
                                                            Time:  6:00 PM
                                                            Location:  Theatre, Central Memorial High School

Please reply if you are UNABLE to attend this meeting.  Instructions for those unable to attend will be forwarded by the CBE through Central Memorial High School.

Oh, dear God. I can see the teaching staff cringing as I read it.

Can you imagine what Suzie's mother is doing right now? SHE HADN'T EVEN THOUGHT TO WORRY ABOUT THIS! This adds a whole new array of possibilities to her already filled-to-capacity bucket o' fear!

I know that the CBE is covering their legal asses. I know they're making sure they don't get their collective butts sued off. 97% of the parents attending this evening know it.

Oh, but poor Suzie's mom.

She and her ilk have probably already written 6 emails to the school, demanding an analysis of the statistical probability of a terrorist attack during the 10 days her daughter will be overseas, with anecdotal evidence, supporting data and referencing source material.

She has probably phoned twice to discuss whether A330's get blown up more often than 747's, and whether anyone thinks that wearing a flak jacket will get her arrested at airport security. She has made flash cards of pictures of 'terrorist types' so her daughter will recognize a suicide bomber when she sees one. She is considering starting a petition to cancel the trip altogether.

Here's the thing.

I love my kids.

But I can't worry about everything, all the time. I have to figure out what's really worth being scared about, and let the other stuff slide. I have to weigh the pros and the cons and decide what's worth pouring my energies into.

What makes our kids special, and makes them interesting, and gives them all their 'them-ness' are life experiences. If they never did a single thing I wouldn't do, they'd be me. The world can only handle one of those. Things go horribly wrong. I've seen it on Doctor Who, and it's messy as hell.

There was a possibility my daughter might have crashed the car on the way to Bragg Creek last weekend, two days after she got her license and the morning after I taught her to drive a standard. Not a big possibility, but it existed. And I thought of it. But she felt she could do it, and she's got reasonably good judgement, so I rolled with it. But the picture she took of herself, on her very first trip out of town in a vehicle under her sole control, tells me the risk was worth it.

I'm a homebody, and it would never occur to me to move to a different city to go to school with a bunch of strangers I didn't like yet. But if I hadn't let Isaiah go, my mom wouldn't get to tell me how excited she was the other day because her grandson called her just to chat and they talked for 45 minutes about his goals, and his life, and how her retirement is going. He is closer to us now BECAUSE he did something that scared me.

So, to the 'Suzie's moms' of the world, what I'm trying to say is this....

The minute we start limiting our children because of of our own anxieties, we start to cripple them. Fear wins. Uncertainty wins. The terrorists win. Whatever it is, whatever you dread deep down inside, it wins.

It's not what we do for our children that matters.

It's what we teach them to do for themselves.

And who doesn't want to teach them to soar?



* Quick note- Liz turned 18 last week. She is now of legal age, and can sign her own life away on a waiver form. So was it I that went to the emergency meeting  tonight?  Hells, no.

Fly, little birdie, fly.

And say hi to Suzie's mom for me. :D








Monday, 26 January 2015

The Great Divide

So, thanks to the great divide, Jason and I have what amounts to two separate sets of children, who have what ended up being two completely different sets of parents. Set #1 had poor parents with the will to live, and set #2 had parents with more money, but who were too tired to care.

As a couple, we have managed to figure out how to screw each and every child up in a completely new and different way from the child before them. I'm sure a lot of these problems are familiar to people with multiple spawn, but we're always seeing new twists caused by the age difference.

Our kids are currently ages 20, 18 (in 3 days!!!), 9, and 4. There are people closer in age to their own children than our eldest child is to our youngest. It makes it exciting when we go out for dinner as a family and Jason and I sit on one side of the table, the big kids sit on the other side, and we let the littles fall where they may. Then we lean back in our chairs and watch the rest of the diners try to do the math. It adds to their confusion that the smaller humans listen to and obey NOT A SINGLE ONE OF US. It's impossible to distinguish parent from child from possible grandparent from distant cousin. It provides us with an endless source of amusement. Add my own parental unit and THEIR age difference to the mix, and you can actually see people's heads explode.

We have paid for babysitters for the little kids exactly twice. Part of being a family (in our house, anyway) means that you have to babysit whenever we say so, and get paid exactly zero dollars an hour for the privilege of doing it. Both our big kids love this part of siblinghood so much that they've taken extreme measures to avoid it. I am even willing to hazard a guess that that's why Isaiah chose to go to college in Edmonton. Anything within driving distance was too close. Liz has gone one step further and has decided to move to Panama for 6 months in September. I feel like they're trying to tell us something. I'll let you know when I figure out what....

NONE of our kids know what it's like to have new clothes. Isaiah and Liz were raised on hand me downs because, quite frankly, that's all we could afford. The two younger ones are suffering the same fate because it's been part of my life for so long that buying them all new stuff is offensive to my sensibilities. Seriously- all they're going to do is wreck them. Eva has never met a tomato sauce she didn't need to hug, and Squid likes to roll on sharp things, like rocks, or razor blades, while wearing his school uniform. It seems to be affecting each kid differently in the long run- Isaiah can't walk past a pair of overpriced jeans now without spending that month's grocery money on the damn things, and even now that Liz has a job, her very favorite outfits come from thrift shops and farmer's markets. The end result here is that both my older kids are now dressed better than me, regardless of what they spend. Apparently, it doesn't take much to top my 'yoga pants and a tank top' ensemble. And my clothes are even new.

My kids also hoard chairs. It's weird. It matters not whether those chairs are in the living room, at the dinner table, or out camping. There are never. enough. chairs. The younger ones are especially sneaky about stealing the seat of someone else.  It's a thing of beauty to watch, actually- much like those species of trees that have evolved to produce poisonous leaves to deter caterpillars; my little ones, who are so easily manhandled out of chairs by children 12 and 16 years older than them, have developed a stealth mode to compensate for their weaknesses. Quite often, someone will look up from a campfire and realize that they've been sitting on the ground for the last hour and a half and their ass is freezing because there's a four year old in their $90 camping chair with built in cooler, and they have no idea when or how it happened.

Things I was morally opposed to with the bigger kids have fallen by the wayside. Hand held video games and DVD players on long drives no longer make me cringe (unless I forget the cord to plug the damn things in and the battery dies). Barbie dolls, with their unrealistic proportions and endless pink girliness were something Liz was never allowed to own. She was forced to play with them, in secret, at her friends' homes, and thus her body image was never in jeopardy- right up until I realized that Barbies had nothing to do with it, and all 12 year old girls thought they were strangely shaped and funny looking. Now Eva owns the entire collection, including such favorites as 'Naked All The Time Barbie', and 'Colored On His Face In A Fit Of Rage Ken'.

I once sent a gift home from a birthday party of Isaiah's after telling a relative in no uncertain terms that he was not allowed to play with guns. Toy guns promote violence and violent thinking, and my children were going to be raised believing in the sanctity of life, with the knowledge that words are better peacemakers than weapons. Now I don't care if someone gives Squid a fully automated SCUD launcher, as long as he plays with it outside and lets me relax for 11 minutes while he takes out the neighbors. It's about perspective.

Isaiah and Liz didn't learn about sex till they were in grade 5 and had THE CLASS at school, after which I explained anything they didn't understand in terms appropriate to their age and developmental levels. Squiddy and Eva know things that would make a sailor blush. In an attempt to have a meaningful dialogue last night with Squid, we had this conversation:

Me: Squid, what's your favorite thing about yourself?
Squid: I guess that I'm funny and smart. (Score one for positive reinforcement!) What's your favorite thing about you, mom?
Me: I guess my favorite thing about myself is that I somehow ended up with the four coolest kids in the history of the world. That a pretty neat thing- I wonder how I did it?
Squid: It's probably cause you and dad keep having sex.


Right, then.

I guess what I'm trying to say is that regardless of whether you have 8 kids under four, or are the 50 year old parent of a single 10 month old, or left a 10 year gap between each of your three kids, you're going to screw them up.

Perfect parenting is an impossible goal. You might as well take on world hunger single-handedly, or try to figure out how the caramel actually gets inside the Caramilk bar. It's probably less frustrating in the long run.

Aim low. Start small. Celebrate the victories and keep the failures in perspective.  Quit judging yourself. Any day you can keep them from biting the head off the hamster is a good day.

Now go have a bottle of wine.

Friday, 23 January 2015

Because, Gratitude.

Squid.

He never does anything halfway, that kid. He continually surprises us with his ability to live through stupid shit.

The night before this all happened, I was talking with Jason about a friend of ours whose child was having surgery, and said to him, (forgetting that the universe is cruel), something about how grateful I am to have 4 perfectly healthy children.

The universe gave me 14 hours to gloat. Then it plunked bricks of karmic irony upon my stupid head.

The kids were off school the following day and celebrated by spending what would have been math class sitting in the kitchen watching 'Mr. Popper's Penguins', (which has subsequently been banned in our house). Out of the blue, he yelled that his eyes had gone all funny and he couldn't see. Before I got down the hallway, out he came, pinballing off the walls and furniture like some blind little sea creature (say, a squid, for example), and said he had to puke.

I took him into the bathroom, and he stiffened up and proceeded to have a full-blown-full-body-drop-down-onto-the-floor-and-shake seizure. I called 911. I'm smart that way. I pick up on the subtle stuff.

Liz came running downstairs- thank God for her unflappability (is that a word?) and hung onto the poor kid while I talked to the dispatcher.

And thank God for my awesome dayhome clients, all of whom responded to my panicked text with lightning speed- most of their kids were gone before the ambulance even got there, and the rest were gone within the next 15 minutes. I should probably give them a discount for scaring the crap out of their children.

By the time we got to the Children's, Squid's neurological assessment was fine, so they booked him for an EEG in a few days and let us go home.

When we had the EEG done, the tech told us that our family doc would have it within 7-10 days and they would call if there was a problem. So when we didn't hear from them for 2 weeks, we figured things were fine. I called them a few days later, though, and booked an appointment for him to follow up.

So we walk in the day of the appointment, get in right away, and the doctor tells us that the EEG was totally normal (thank God), and just to book him for a physical in the new year, and sends us on our way. As we’re packing up to go, he says ‘Do you want a copy?’ and I, with my constant need to know everything about everything, say yes.

And off we drive to McDonald’s. At the stoplight, I look down at it, cause I'm too lazy to put it in my purse and it's still in my hand, and no word of a lie, the FIRST WORD ON THE PAGE IS ‘abnormal’. And the doctor has had the thing in his possession for 3 weeks.

I thought I was going to have a heart attack. So I pull over into the first parking lot I see, and read the thing, and even to my non-medical eyes, it is VERY CLEARLY not a normal EEG, and says right on it that he needs to be referred to a neurologist.

So I call the doctor, cause I've literally only been gone 5 minutes, and he picks up the phone, and I ask him if he READ the report, and in his important doctor-ey voice says "Of course I did", and I suggested that he may want to reread it. Then there is a giant 5 minute silence (in which I assume he watches his medical career die in front of his very eyes), and he says "Ok- I see that now" (Now???? Fucking liar. That implies you read the thing once already, which we all know you didn't actually do.) "You need to turn around and bring him back in so we can get a referral done and we need to make a plan."

(Note- said plan includes him no longer being our doctor. Nor would I suggest that anyone in the area use Dr. Felicien Mbuyi at the Richmond Road Family Medical Centre for anything that requires his full attention. Like doctoring, or prescribing, or not killing you. His track record is not awesome. If, however, you need someone to do a half-assed job and pay absolutely no attention to detail, then I highly recommend his services.)

I went back to his office, and all he can do is apologize. I left Squid in the waiting room while he set up the referral, and while he’s typing, he’s apologizing, and I refuse to yell till I have the referral in my hands, but if he apologizes again, I may SNAP. He finally hands the thing to me, and everything I hadn't said in the past 15 minutes comes out of my face, and I can hear the front office staff chatting with my son, and their voices are getting louder and louder, in an obvious attempt to cover up the sound of my voice, which is not overly quiet to begin with.

You know how you get mad at someone, and later on, think of something you should have said and regret not thinking it sooner? That didn't happen. It was almost magical, really.

As I started to leave, the nurse and receptionist apologized one more time and my composure flew right out the window. I turned around and yelled “That’s great, thank you, and once I find out whether or not your negligence has harmed my son, maybe I’ll GIVE A FLYING FUCK!” And slammed out the door.

And then had to turn around and open the door for my kid. Who I had left behind in my rage. Not my finest exit.

So we stop at the new doctor’s office that opened up right by us, and I explain to the receptionist, and we have a new family doctor in a matter of minutes. When he came into the room, I handed him the results and he read it, looked at me, read it again, and says “He can’t possibly have looked at this!!" and then he says “You have to pay attention in this job- this is DANGEROUS!!”. And when I asked what he meant by 'dangerous', he says “Well, we aren't worried anymore that there might be something wrong with Squid- there is clearly abnormal electrical activity occurring in his brain, which caused his seizure. There are two possible causes. Our job now is to figure out which one it is. The neurologist is going to do some tests and rule out the possibility of it being a brain tumour. If (If??? What????? IF????????) we rule that out, then we know it's epilepsy."

And that was how we spent Christmas. Praying for epilepsy.

On January 14th, Squid met his new neurologist, and we really liked her. Which is good, cause we'll be seeing more of her.

Anyway- based on an EEG and the neurological assessment, she feels reasonably confident that it’s not a tumour. They’re still doing an MRI just to make sure, but he passed his neurological exam with flying colours. That, combined with the fact that the spikes in his brain are occurring everywhere, rather than being specific to one spot (if they were all at the back of his head, say, or by his one ear), make it very unlikely that a tumour is the cause. It’s far more likely that the epilepsy is not caused by any underlying structural defect, but rather because he just has epilepsy. 

I actually said "Yay! Epilepsy!" Apparently, she hears that a lot. And I then had friends say it to me, which I found EXCEEDINGLY funny when they realized what words they'd just said out loud.

The neurologist thinks what happened when he had his original seizure is that he actually had TWO separate seizures, one right after the other. The first one was something called a focal seizure, when his vision got blurry, he lost his coordination, got all confused, and walked into the wall. This triggered a completely different type of seizure- a tonic-clonic one, which is the one that caused me to call 911.  The Friday just before the neurology appointment, he ‘got dizzy and my eyes got funny and I fell down at school and couldn't get up’, and she was reasonably sure that was a seizure, as well. She thinks he’s probably had a few of them during waking hours the last year or so, but because it just looks like dizziness or not paying attention or clumsiness, (all of which he has a black belt in) we hadn't noticed.

All of a sudden, a bunch of stuff is coming together and making a ton of sense- random pretty bad headaches and sleep problems over the last year, some new and interesting shitty behaviour, and problems focusing at school, which are all are being caused by these seizures. Even as she was telling me this, the kid was leaning on the exam table at 11 am, yawning and falling asleep. It’s almost impossible for him to get a really good, deep, sleep, because he’s seizing. And being sleep deprived can trigger seizures in people with epilepsy. So around and around it went, until it triggered an event that we couldn't possibly misinterpret.

They started him on anti-convulsants right away, and within a very short time, it should help with the seizures (you know- cause we didn't notice the first ones, so I'm SURE we'll notice them stopping), which will in turn help him get a full night’s sleep, which will in turn decrease the chances of him having a seizure. They’ll follow up with an MRI just to confirm that it’s not a tumour, and in 6 months we’ll see the neurologists again and have a repeat EEG to see if the medication is helping- if not, we’ll try a different medication/dosage, etc. 

It seems to be helping so far. He's been on them since the 14th, and he's hopping out of bed in the mornings instead of having to be pried out of it 11 or 15 times in a row. And his headaches are gone, which is awesome. He also cries at the drop of a hat, has totally lost all impulse control, is having some anger issues, and spends 2 hours every afternoon running in circles around the neighbourhood in an attempt to stave off hyperactivity so bad that he describes it as 'like he's at a birthday party and never, ever leaves', but they tell us that these side effects should subside in a few weeks. I hope so. I've kept him home from school till he can regain a bit of control, and to be honest, it's becoming less and less enjoyable as time goes on. One of the really common side effects is exhaustion, which I thought meant we'd be sleeping in for a few weekends in a row, but alas, that was not to be.

The drug he's on is a good one- it won't make him stoned or damage his liver or cause bone loss, like a lot of them do, so we're powering through the initial shock of the side effects in an attempt to keep him on them. The other drugs are scary enough where I'm not convinced they'd be improving the situation at all. Basically, until the uncontrollable rage I keep being warned about causes him to smack Eva in the face with a shovel, TWICE, I'm sticking with it. I'm rapidly becoming an expert in all things epilepsy. My Google medical degree is in the mail as we speak.

At first we were so high on the 'not a tumor' factor that we didn't even care that there was a down side. We've gotten a huge education in the last week and a half, and the realities of the situation are starting to set in, but I refuse to forget to be grateful.

I'm grateful not only that Squiddy's head is not a ticking time bomb, but also for the seizure that alerted us to the problem now, instead of 6 years from now, when he's old enough to drive and maybe had a seizure and killed himself or someone else.

I am grateful that we have been reminded to appreciate every split second with our kids. Even the ones who are currently pissing me off. Just in case their brains explode.

I am grateful for the people with whom we surround ourselves. Who listened to me sobbing in shock on the phone and talked me off my ledge; who, rather than tell us not to be afraid, were scared with us and quietly prayed we didn't have to be; who listened to all the what-ifs and then went ahead and stayed totally optimistic in spite of them; or who insisted on Christmas manis and pedis and drinks even when it was quite literally the last thing in the world I wanted to do.

And things are looking a whole lot more wonderful than they did a month ago.

Because, gratitude.