In order to go on with the business of life, you have to tell yourself a certain number of lies.

One of these lies is that the way things are now is the way things will always be.

Charlie hasn’t had a seizure since six months of age and at some point I stopped worrying about them. I didn’t think they were an impossibility–seizures occur in people with no brain issues and we’ve got hardware and areas of significant damage–I just assumed that if and when the seizures did come, I would be able to handle them.

So when my husband came in our bedroom on Friday night and reported that Charlie was having a seizure, I was calm. He brought Charlie to me and I held him in my arms and waited for it to pass.

But it didn’t pass.

Emergency meds didn’t help either and before I knew it we were strapping his seizing body into the van so I could take him to the emergency room. I got about six blocks before I realized I can’t do this. I swerved in front of town hall and waved down the police officer doing a detail at Friday night bingo (it’s a small town). EMTs came immediately and made sure Charlie was OK while we waited for an ambulance.

Forty minutes later he was still seizing and a nurse tried to reassure me as I began to cry. It’s Ok, mom.

It was most-definitely not OK. No matter what that lady said. They inserted an IV in one arm and drew blood from the other.

A dose of IV meds and he stopped twitching, but still wasn’t moving.

A second dose and he started to move–except his left side, which was paralyzed. He smiled at me a lopsided smile–loopy from the drugs. His good arm–the one he uses to eat and drink and communicate–lay motionless at his side. My stomach lurched, taking in this new development. Grinding my teeth, I smiled back.

Boy sleeping with oxygen canula

Took this one so Dad could see his boy was OK.

Once he was out of the seizure, they loaded him up with another heavy-duty dose of anti-epileptics and arranged to have him transported to the Big Hospital where his neurologist works. It had been ninety minutes since he’d begun seizing at our house. A long, frightening 90 minutes.

We spent Friday night in the hospital and all day Saturday sleeping off the effects of the gallon of drugs they had to give him. We’re home today (Sunday). Late Saturday evening he seemed to be fully recovered–able to point and select with his left hand and no signs of the droopy-sided smile.

I’m reminded for the zillionth time that life can change in an instant. We are lucky this time, but there are no guarantees. I don’t like to think about it much more than that. You can’t go down that road and stay sane. I’m grateful for what is and that’s all I’m going to think about right now. Squeeze your babies tight, y’all–you just never know.

Boy smiling with iPad

Back to his usual self.


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  1. So glad that he’s OK. And thanks for the reminder. Hugs.

  2. wow. breath. i cannot imagine. no, actually, i can. i am forever scarred by the months our first child spent in the NICU. i do not know– no matter how brave a face I always put on– that one every fully ‘recovers’ from that sort of an experience. i am sorry your family experienced this…. especially when you were so bravely lowering your guard. sending your whole family warm thoughts today. what a wild ride this motherhood gig is, hmmm?

  3. This breaks my heart. I’ve been reading you so long I feel I know you guys. You will all be in my prayers but especially sweet Charlie. Do they know what caused it or is it just one of those things that go along with all the challenges he faces? Hugs.

  4. Big hugs to you and to Charlie! I am so glad that he is okay!

  5. So glad Charlie is okay. I’m someone who reads often but comments never. But I really want you to know how much I hope your beautiful family is okay.

  6. So sorry you had to go through this. Sounds so scary! So happy to hear he is doing well now and back to his usual self. I really do hate seizures!

  7. Oh i am so very sorry how scary that must have been. I am sorry you got tht jolt that your new reality can change xxx

  8. What Meggan said.

  9. Oh I’m so sorry you guys went through that! It made me well up just reading up about it. Big hugs and hoping for smooth sailing the next few weeks while you recover!

  10. I wanted to cry reading this. Your son is beautiful.

    My Mom has epilepsy. I remember one time she had a seizure and stopped breathing. I remember yelling at my Dad to “DO SOMETHING”…. she did start to breath again. Scary stuff though.

    Life is precious. Every minute of it.

  11. I seriously think this is the most terrifying thing I’ve read in a long time. I’m so glad you were able to keep it together and even happier that Charlie came though so well. Hugs to you & all your boys.

  12. Katie, you are one amazing mother and I am so glad that Charlie is ok:) Sending you guys some huge hugs xxx

  13. This brought tears to my eyes tonight. I’ve been thinking of Charlie and I’m just really glad that he is okay.

  14. Gah, Katy, I’m sorry this happened and that you had to worry and I can only imagine the uncertainty of not knowing when it can/will happen. I’ll pray that there are no more seizures to come. xo