Lean In

I said hopefully the next time I wrote a post, we would hopefully be through this, and to be honest, I was beginning to think that there really wasn’t going to be light at the long, dark, lonely tunnel but it’s been three nights of peaceful rest. I’m still on edge, always expecting screams to come, but Colleen seems to have turned a corner. And I can only begin to imagine how bad it was for her body to take a month and a half…nearly two, to recover. This past Tuesday, she fell asleep around 12:30PM, while I was at work. She didn’t wake until almost 6:30, and that whole time I was thinking, “please, just let her sleep!” Her exhausted body desperately needed it.

June 29th vs. last night (Mate app that pairs with the Embrace watch)

I’m not sure how we made it through. I don’t think I’ve ever doubted myself more than during this period, questioning everything I was doing just to try to help her, while seemingly making it worse. But, if there’s one bit of help I can give, it will be advice that was given to me: lean in.

I was the lonely soldier. But I was losing. And I am so thankful that people saw me in my brokenness and reached out to offer support. So, if you find yourself in a similar situation now or in the future, know that to don’t have to do it alone. Lean in and ask for help wherever you can. Even the most simple of gestures can mean the world. I’m here too, if you need to talk, or for someone to listen.

Seizures and fear. 

There’s absolutely nothing that can prepare you for it; a seizure.

It’s been almost 2 years since Colleen has had a seizure. And it was not expected at all. She has a favorite crab toy that has a mirror and little pieces that spin around on a track. She plays with it all the time, and likes to lay on her back with this thing in the air. Scares me, but she’s never dropped it on herself so I don’t think there’s much to worry about. Well, Friday night after she had a bath, I was brushing out her hair and putting it in braids. This was her cue to either deploy the defenses of her hands or try to ignore me. She chose ignoring me, along with playing with her toy.

A little while later, right before 8PM, she was playing away, toy in the air. Then she let it down on her face. She was breathing slightly heavier, and I just thought she was doing something silly. So I took out my phone to record her newest antics. After a moment, I moved it and noticed her eyes fluttering a lot. She was very still, not moving. She wasn’t responding to me talking to her, and I picked her up—limp. I couldn’t believe she was having a seizure and I didn’t even know. I laid her across my arms and started the timer on my phone. How long had it been since it started? Tears, consoling.. my poor baby. Not too long later, she came out of it and I hugged her. Those are the longest minutes of your life.. Just over 2 minutes on my phone. I checked the video, which was about 50 seconds long.. the one where I was stupidly recording her instead of realizing she was having a seizure.

Sleepyness after the seizure.

I could go the rest of my life without having to see her go through that. I would very willingly take it upon myself if she didn’t have to go through that. Plus the fear.. She was very tired and grump after the fact. Coupled with her not burping well, it wasn’t until 10:30 where she was finally able to sleep. And I laid down right next to her. How do you sleep after that? Anxiety, fear, depression. It’s just not fair that she has to suffer.
I really hope her embrace watch will be able to help. I’m still not sure if it will be able to sense her type of seizures, so we’ll have to see. For now, I’m waiting until her neurologist office opens. Hoping since her keppra hasn’t been increased in a while that doing some blood work and increasing the dosage will help. I can’t help but hope that maybe without the seizures, her brain her reforming connections, or something that will stop them. Then this happens, and you think, “no, she is still stuck with this monster.”

We need more epilepsy awareness. We need to find a cure..