Back to reality

I haven't written here in awhile. I didn't need to. The summer was largely calm, as far as seizures go. Aaron was at home pretty much all summer. I didn't need to worry. Home is calm, home is stress-free, home is fewer seizures.

I was so nervous about him starting 6th grade. New school, new class structure, much more movement. I kept thinking back to last year and how much school he missed and how horrible it all was.

And last Wednesday was our first day of school. It went perfectly. In fact, he didn't have any seizures until Friday, and even that was a very brief one, in class. He even went to a sleepover at a friend's the next night, and he was completely fine.

And today about noon I got a call from the school nurse. Aaron was in her office, having had a seizure and fell and scraped up his elbow. He wanted to rest for a bit, and see how it went. I got another call a half hour later to come pick him up. I've been close to tears ever since.

He was weak and trembling. Could barely walk. He could barely feel his legs, like he did so much last year. I kept telling him that it's just anxiety, that his legs are strong and work fine. Of course it didn't help, why would it? I feel so impotent against this beast epilepsy, and the havoc it wreaks on his little body.

I had just started to hope, too. I had just started believing I could maybe look for another job and get out of this very bad career situation I am in now. I even started looking at nursing programs - going back to school to become a nurse. I thought I could make plans for my future that didn't have to bow to seizures.

And in one damn phone call, it all came crashing down. This...this is why I don't hope much anymore. They always, always come back. 

Milestones

I am a blubbering mess. Today is Aaron's promotion ceremony from 5th grade.

Both of my older boys had a 5th grade "graduation" ceremony - in Albuquerque, 5th grade is the last year of elementary school. It's the longest time they will spend at any one school - 6 years - because middle and high school are only 3 and 4 years respectively. It's a little bittersweet to say goodbye.

When Joey and Quent completed 5th grade, it didn't seem like such a big deal. We happily looked forward to the next school adventure of 6th grade.

But it's different with Aaron. I honestly didn't know if he'd survive until this point, and if he did, I wasn't sure he'd pass 5th grade. So much school missed due to seizures and not feeling well. But here he is, thanks to a great/patient teacher and a school that really cared about him. And not only am I crying for this accomplishment - which is huge for us - but also a little out of fear as he steps toward greater independence and what that means for him. I'm a little afraid, to be honest.

I began writing a thank you card to his teacher a few minutes ago, and it has reduced me to tears. I will miss her, and these people who so wonderfully cared for my little boy during all those minutes and hours when I could not be with him.

Today I will celebrate a boy who is stronger than anyone I know, and know that when they call his name, it is a

REALLY.

BIG.

DEAL.

Predictably unpredictable

I knew it wouldn't last. That lovely, blissful, almost-seizure-free period. He had a seizure at school on Friday, and had to come come home. He was with his dad for the weekend, but had a couple on Saturday, and several on Sunday. I thought he might be ok yesterday, because he was fine when I dropped him off at school. But I got a call around noon; he'd had a seizure and fell and hurt his head and his shoulder. He didn't have any more seizures yesterday, but the episode left him with a completely numb right arm & leg. That used to happen a lot; he was hospitalized for it last year when, for nearly a week, he could barely use any of his limbs. The EEG showed nothing, and it was considered "functional weakness." That is, his body just temporarily paralyzes and there is really not much we can do about it. It's some kind of psychological protection, and there isn't a pill in the world to fix it. I tried visualization with him before; it actually helped once. But never again after that.

So, I missed another half day of work. Well, I "worked from home." For a job I still do not enjoy - at all. I wish I could just keep earning the same money, just for taking care of my family, but I've learned not to invest too much time in fantasies. And besides, for all the dislike of it, at least it takes my mind off seizures for awhile, sometimes.

I was thinking this morning how glad I was to be past the baby stage, when everything had to be locked up and put up and they needed my attention every minute. But at the same time, at least it was predictable - I had a fairly good idea of what each day would bring. And I miss that a little bit.

I thought it was chaos then, but I had no idea what that word meant until epilepsy came along.

A Reprieve

Remember what I said about hope being a bitch? Yeah. Hope is feeling angelic, for now. The past week has been gloriously NORMAL. Ok, maybe not normal for us - normal for us is lots of seizures. But good normal. Normal people/family/kids normal.

Today is Tuesday; Aaron hasn't had a seizure that I've seen since last Tuesday (his brother saw one in his sleep last Friday). He's been running around playing, riding his bike, doing all kinds of active stuff. I'm getting a bit further from the "waiting for him to jump out of his skin" mode, although it's always quietly in the background. However long this seizure-free (or seizure-reduced) moment lasts, I'm enjoying it.

He started a new med last week, Lamictal, and we're still on the first dose of a 10-week titration schedule. He often has a honeymoon period with a new med; it works great at first. After a while his brain gets bored with being reined in, and neurons start partying like very bad frat boys again. So, we enjoy it while it lasts. I don't know if he thinks about this, but I do: the seizures aren't gone for good. The past 6 years tells me so.

Over the past few days I've worked on getting his Boy Scout uniform patches on; he proudly tried everything on this morning so his stepdad could see it. Their meetings are on Tuesday nights, so he'll be going tonight. I honestly hope he gets healthy enough to be able to do camp outs & such, but for now, they are an "only if Mom can go too" thing.

So...Lamictal, Depakote, Banzel, and Keppra. That's where he's at now. The cocktail is doing a good job for the moment.

Feeling fearless...

Something

I can't deny this: he's had a few good days seizure-wise. He's had mostly just single seizures (one a day) and a few minor twitches.

He has been wanting to join his brother's boy scout troop for awhile. I sort of put if off - I'm not sure how it will go. I don't like the idea of him going on weekend campouts without me there, so might have to go (ugh). They do them once a month. I know for sure I'm not yet comfortable with him going on a week-long boy scout camp. Not with the frequent clusters he's had.

But he loved the meeting tonight, and he needs... something. Something to look forward to, to feel good about, to work towards. And maybe he'll continue to have more bad days than good, and maybe he will miss a lot of meetings. But it's something.

Besides, big brother Q will be there with him, so that makes me feel better.

I'm glad that today, HE felt better.

Make me feel better.

I had high hopes this morning. Sort of. Ok, medium hopes. But hope is a bitch...


My son was doing pretty well this morning. I dropped him off at school. I teared up as he walked out of sight, away from my car in the drop-off lane. I worried he'd have a seizure. But he seemed ok, so I made my way to work.  A couple of hours later, the school nurse assistant called. He was having lots of twitches, felt like he'd seize any minute, and wanted to come home.

It was a monumentally busy day at work, so I brought him to the office with me. We stopped by home for 10mg of Versed first. It seemed to keep the seizures at bay, though he still had a few twitches.  But it's hard trying to get a pile of work done with an 11 year old boy around. He was pretty good, considering.

On our drive home, I was just drained. He wanted to listen to this band he likes, Skillet. It was making my head hurt worse - they sound like they are screaming, to me. I told him I wanted something soothing. So he chose a somewhat softer song of theirs, with the preface that "it makes me kind of emotional." It's about faith (he believes in God, I do not), but he thinks of this song in terms of his epilepsy:

I don't wanna feel like this tomorrow
I don't wanna live like this today
Make me feel better
I wanna feel better
Stay with me here now
And never surrender

Do you now what it's like when
You're not who you wanna be?
Do you know what it's like to
Be your own worst enemy
Who sees the things in me I can't hide?
Do you know what it's like
to wanna surrender?

It made me emotional too, and a few tears escaped. I don't want him to feel like this tomorrow, either. And I wish, oh how I wish with everything that is in me, that I could make him feel better. 

But this is a giant gaping wound that I just don't have band-aids big enough to cover.

Woof.

I need to do another application for a seizure dog. We've tried once before, with a group called Paws4Epilepsy (I think that's the name). After filling out the huge application, getting referral letters from multiple sources, and paying the application fee, we were told they don't certify service dog handlers under the age of 16.

We found out there is a more local one that DOES certify children (over age 5), so I looked at their application last night. It's a higher application fee, and the cost is in the thousands, but hopefully we can do some fundraising to cover it. My son's been asking for a seizure dog for a while now.

I know it won't make his seizures go away. That's what I really want, but no, it won't do that. It will make him feel safer. It will make the constant anxiety that he will have a seizure somewhat less. And maybe, just maybe, that will help him to have fewer seizures.

The work as a parent is never done; I think everyone can attest to that. But having a child with a disability is like being given extra homework every night. And detention most days. Sometimes, it simply wears me out. Even when I do get enough sleep, I still feel drained.

It changed me.

I read some social media post about a mother who was free spirited and happy. I thought, "It's easier to be happy and free spirited when your children are healthy."

I wondered why it stung me so. It wasn't to me or about me. But I felt judged by it anyway. That I take things too seriously, that I am too cautious.

I do have a sense of humor - my friends can attest to that - but no, free-spirited is certainly not how I'd be described. Perhaps they wouldn't even describe me as overly happy, although I am most of the time.

I used to be more free. I used to do things like procrastinate and do things spur of the moment and, well, not cry so much.

But the seizures...they have changed me. As I have watched my boy grow from a silly little jokester, taking all the risks, into a much more serious, guarded adolescent, I have made a similar transformation. It is a change wrought from the need to survive, and not worry so much about the thrive part. I feel as though it's been a necessary change, to protect both him and me.

I don't know if those who knew me before and after my son's epilepsy have noticed the change. But I do, and it makes me a little bit sad.

April Fool's!

I feel like that's what last week was. After 2 weeks of missing school and life due to nearly nonstop seizures, my 11 year old son attended school. All week long. With not ONE call from the nurse's office to say he was having multiple seizures and needed us to pick him up.

Last week was my husband's last week at home. He'd been at home and unemployed since mid-October, having not found work after a long-term contract ended. While the reduced income wasn't easy, having him there to care for my son while I worked made things less stressful for me.

So, when Aaron had a great week healthwise, I started to hope. He was riding his bike. He was doing fun things. He was living - really living. And yesterday, Monday, everything started again. The convulsions every so often. The weakness in one leg. The inability to feel safe enough to attend school.

And of course, my husband left Sunday for his new job; he'll be traveling a lot anyway, but this is a training week out of town. And this would be my busy week at work. But I am at home, torn between my son and my job. A job I don't even particularly like. A job in which I've suffered a huge amount of stress and mistrust of those above me. A job that, like many, has nothing to do with my degree, let alone makes me feel a sense of enjoyment or purpose. It's a paycheck.

But it's a paycheck that allows me to buy his medicine, pay his hospital and doctor bills, and take care of the needs of my son and his two older brothers (oh yeah, he's not my only concern).

I'm torn a lot. Today, especially so. Today, I wish for the neurons to shape up and shut up. I wish for my son to have another good week. I wish for a life in which chaos did not rule nearly every day.

But those good days and good weeks only fool me for awhile, because the seizures always come back. And they don't care if it's April 1 or chilly day in November.