Lately

The seizures have been bad, lately. They have come nearly every day, and when they do, they are longer and more severe, according to Aaron. This morning he woke up weak - could barely eat his cereal. He did not go to school, of course. I was just relieved that he woke up this morning. I was relieved that my child woke up. I was afraid that he wouldn't. I don't know anyone else who understands that.

I came to work because I need to get things done, and I don't think he needs me there, and this is really fucked up, but I need to be away from it. From the storms in his head. I know he can't get away from them, no matter how badly he wants to, and here I am just leaving to go to work. What kind of fucked up thing is that? What kind of mother am I?

I don't want to live to see him die.

Every time

I frequently read an epilepsy forum. Every now and then, someone will post that a loved one has died from SUDEP.

It is my biggest fear.

Read another one today, and it makes me so scared. What if my baby is next?

But all we can do is keep taking meds, keep on top of the things we can, and hope for the best

Always there

I think the fear will always be there. I have small periods where it's less, but...it's always there.

My son has been "doing better" with seizures since his RNS device was turned on. He hasn't left school once for a seizure since it started back after Christmas break, 4 weeks ago. He had to miss a day when he sprained his ankle from a seizure that didn't happen at school. But it seems like he's having fewer debilitating seizures.

That being said, last night he scared me quite a bit. He's been going to the gym with me a couple of times a week, and sometimes he uses the cardio machines - he's particularly fond of the elliptical. I always worry about him, but until last night, he'd been fine. He had a seizure while stepping off the elliptical. Several people rushed over to move the equipment and give him room, offer water, try to make sure we were ok. He was fine after sitting for a few moments, but wanted to go home.

I was grateful he wasn't hurt, but I know he could have been. I know it could have been awful. I know he could have gotten a badly broken limb or a head injury (he reinjured the foot that he injures all the damn time from seizures).

I feel like he's going to always have injuries and I can't stop them and one day it's going to be the one that he doesn't come back from.

And I'm scared. Always.

Glimmers and shivers.

So, it's been almost 3 months since Aaron had his RNS implanted - the device that is both a constant EEG, and stimulator to stop seizures. We didn't get it turned on until December 10, at which point we learned the EEG part had not been doing much. It only recorded 2 seizures out of dozens. So they made adjustments, and turned on the stimulator...and it has made a world of difference.

He still has seizures, but I was convinced not as many (a few a week, rather than every day). And, he seems to be recovering from them faster - no more weakness and twitching for hours afterward. I wanted to find out if the device was capturing his seizures, so I contacted his doctor (we don't have another visit until 2 months from now). And sure enough, he said that Aaron has been having many seizures daily. And we are not seeing - and he is not feeling - many seizures daily. Which means that it's working.

It's.

WORKING.

It's hard to have a lot of hope long term, because things have worked before and then the seizures always came back, usually with a vengeance. But he is 8 school days into the new term, and hasn't had to come home even one time for seizures. I can't remember the last time he had 8 class days in a row without a call from the school nurse. I have glimmers of hope.

And even with all that, my fear isn't gone. I mean, I have had 11 years of waiting for him to fall and break a limb, or hit his head so hard he can't wake up, or just not wake up from a regular night of sleep. I will probably always want him to slow down, be careful on those stairs, don't do things that might cause him to fall because I know he can't catch himself. I don't know if that will ever go away. I don't know  if the shivers of worrying the worst is going to happen will ever really subside.

But it IS a current victory, and I'm incredibly grateful and happily surprised.

Bad day number whatever

The morning was going ok, until I heard a crash, and heard him cry out. I knew he had gone downstairs so I rushed down there. He was crumpled at the bottom of the stairs, sobbing. The dog had stepped on his foot, or tripped him, while he was going down the stairs. He tumbled down, hurt his foot badly, and had a seizure. He and I sat a good long while til he felt well enough  to stand and go back upstairs. Before that, I yelled "FUUUUUUUCK!" as loud as I could. I was beyond frustrated, stressed, sad. I'd not slept past 2:30 am the past two mornings in a row, and was not dealing with it well.

His surgery to implant the RNS is scheduled in two months. It feels so far away. It feels like he has no chance of succeeding in school until then. Maybe after then. I am missing work again...technically I can work from home, but I feel so bad about it.

I'm exhausted and stressed and I need a win. He needs a win.

Can't finish

I'm driving home, the start of a long, 3+ hour journey, and he is in the passenger seat trying to eat the breakfast I just bought him from a drive-through. His hands aren't working well because of the weakness, and he struggles to bring the breakfast sandwich to his lips. I watch him from the corner of my eye, and though I'm wearing sunglasses, I fight like hell to keep the tears that have welled up in my eyes from streaming down my face. I can't add to the way he already feels.

******

Last night I cried so hard that I thought I'd be sick. I worried the neighbors would hear me through the cracks in the window. I mean, I was wailing.  I wrote in my paper journal that I didn't want to wake up today. I couldn't do anything about that because a) I was chicken and b) I couldn't bear for any of my kids to think it was because of them.

Nobody was home but me and the dog, and I'd closed the door with her in the hall. I needed to be Alone alone.

Earlier that evening, our scoutmaster had called me. Aaron was not doing well at summer camp, where I'd dropped him off the day before. He had a seizure when we got there, and scraped up his knee (in addition to dealing with an already-sprained ankle). But he bravely wanted to try. His summer has been nothing but seizures and hospitals and doctors so far. We both wanted him to have fun and hoped so hard I thought my heart would break. So I let him stay, knowing I might get a call to retrieve him.

Our scoutmaster let Aaron's big brother (who was also at camp with him) borrow a car so that he could bring Aaron to me halfway, so that I wouldn't have to make the whole 5 hour drive up there. When he arrived at our meeting point and parked, I helped Aaron out of the car. He could barely walk. The entire ride home, even after a rescue med, his right hand was twitching. He was clearly miserable.

I'm at my wit's end, and desperate. I know we go in two weeks to get surgery recommendations from the doctors in Colorado, but it feels so far away. Treatment feels even further, especially when school starts in 1 month and I have no idea what to do about it. I am nearly certain he won't want to try regular school again but I cannot do online school again - my work is just too much now.

I feel so tired and yet, I can't rest because I am also so incredibly anxious.

Because today I watched my child struggle mightily just to feed himself a damn egg sandwich.

Beside myself

He has gotten worse. For the past couple of weeks, he's had more bad days than good. Days full of seizures, tremors, weakness, dizziness,  and double and blurry vision. Our local doc says it might be due to the really bad couple of seizures he had in the EMU, where he had his usual symptoms plus turning blue and drooling a lot, and a horrible post ictal period with headache, moaning, and inability to talk.

I'm googling TIA. I'm wondering if the increase in his Lamictal has made him worse, not better. I'm worried that all of this is taking an irreversible toll on his developing brain.

School - online school, that I miss work to help him with -  is over in less than 4 weeks, and he's already a couple of weeks behind. It's not an option to think about trying to work on at the moment.

He had one good day yesterday (Thursday) and one good day last Saturday, out of the last 12 days. I don't want to take him to the hospital, because it's more money and stress and they don't do much there that I don't do here: wait it out. At least at home he can relax and be with his family and his dog, surrounded by the familiar.

I am just so worried that all of the waiting for the appointments and surgery possibilities in Denver will just be too late.

I love my son so much and I'm devastated for him all the time.