Wednesday, December 28, 2016

Epilepsy Too?!

A few months ago I was yanked from a deep sleep, early in the morning by my husband's panicked voice calling down to me from the floor above.

'Kristin! Kristin!'

I could tell by the tone that something was very wrong. The tone and the fact that he doesn't tend to wake me up by shouting my name.

I ran upstairs and down the hall to the room our older boys share. The light was on, Adam was up on the top bunk with Damek, and Damek was in the middle of a seizure. I had only seen one other seizure before in my life, but I knew without a doubt that that was what I was seeing.

'Call 911!'

I grabbed Adam's phone and dialed. It rang and rang and rang and no one picked up. I thought I had the wrong number so I looked at the phone. No, right number. I hung up and called again. This time, someone picked up. I calmly explained the situation, while saying good morning to Asher and Caedmon. I felt completely in control.

As I let the firemen, then the policeman, then the paramedics into my home pre-5am, with my pajamas on, my hair unbrushed, my home the obvious residence of young children, it was all totally normal. I was the hostess welcoming our guests.

Damek came out of the seizure and was completely confused with why there were all these strange people in his bedroom looking at him. I held him and chatted with him and our new friends. As they saw that he was pulling out of it and would be fine, they left, first the policeman, then the firemen, and finally the paramedics.

We were left looking at each other. Quite the exciting morning.

Adam packed a bag and headed to the ER at Children's with Damek. I got the other boys ready for the day and got them both to their schools. I waited for word from Adam but it didn't come for a while. I knew it would take a while. There are always a million questions to answer and possible tests run. But I hate being the one sitting at home, waiting.

Finally, Adam called as he was dropping Damek off at school.

'They think it's epilepsy. He has a sleep-deprivation study scheduled in a couple of weeks.'


Epilepsy. Epilepsy? Epilepsy?!

Cue the guilt. Cue all the feelings of 'What is wrong with my body? How did I fail my kids? What is wrong with me?!'

I mean, one child with a disability or a difficulty of some kind a mother thinks, 'Maybe I ate something wrong or did/didn't do something'; two kids with disabilities/difficulties a mother thinks, 'What is going on here?'; all three children with disabilities/difficulties a mother thinks, 'My body has completely failed my family! How can this be?!'

I wonder sometimes what it is like to have normally developing children. What is that like? What is it like to just think a cold is a cold and nothing else or the flu is just the flu? What is it like to go to parent-teacher conferences and just have the parent and the teacher? What is it like not to have to visit a child's school multiple times throughout the day to care for your kid? What is it like to not have multiple medications to keep straight? What is it like to watch your children make typical progression on every chart at the doctor's office? What is it like to sit back and just watch your kids grow with little to know input from you?

I really didn't even stress out about the epilepsy, I just thought, 'Well, there's one more thing. Alright, what do we need to do about it?' It just seemed right. 'Yep, that sounds about right.'

The great news is that the doctors are pretty confident that this is a benign epilepsy, meaning Damek should outgrow it by the time he turns 15. And this particular type is one that normally strikes at night, while he is sleeping and typically acts like a tingle on one side of his face. Rarely does it move to other parts of the brain and cause a grand mal seizure, like we saw that early morning.

But I am left with the feeling of failure again. What is going on? With both Caedmon and Asher the genetics counselors reassured us that it was not a genetic issue, just some random, fluke thing. But sometimes, in my weak moments, I think they must be wrong. It must be me. It has to be.

And what good does that thinking do? Absolutely none. So I allow myself my 5 minutes of pity, cry my tears, pray my anguish, stay up way too late writing it all out so I can get it out of my brain. Then I sit up straight, dry the tears, thank the Lord for the good He does every moment, go kiss my boys as they sleep, and allow myself to get the rest I need for a new day tomorrow.

1 comment:

  1. oh how scary!
    i have anxiety (the beautiful little accessory to my autism) and every time they are sick i fear the worst of whatever. i guess after three and various illnesses i am used to it and more prepared, but i still get nervous and anxious stomachache every time. what if their fever turns into a seizure? what if they have something more serious? and if they dont sleep - as was the case one night this past october during the great hand/foot/mouth experience.. im unable to think clearly and the anxiety and hypochondriac in me kinda takes over. unfortunately, i ended up with a very unsympathetic doc who sassed me that i should "vaccinate my kids from the other things they can prevent" - as if that would solve the hand/foot/mouth and not sleeping because of it problem....

    im so sorry you guys are going through this. you have three beautiful kids! regardless of their weaknesses and/or issues, you have the Lord! His grace is sufficient for their or your body failures. You aren't Eve. ;) you can only do what you can do, you can only be who you are. there are so many things that i guilt myself about that might be different than physical, but when talking with my pastor recently, he just reminded me that the Lord says "My grace is sufficient for you"!
    we all have something we guilt ourselves over.

    either way. im so sorry for all the struggles. heaven will be ever so sweet.