My son has a bad brain...
By ErinMayer on January 10, 2012
I really don't like creating a blog post without a picture in it, but since I've been too lazy to upload new images from my camera lately, this will have to do... (and a warning, that this post probably won't be super flow-y)
I'm sorry, I guess, for people who come to this blog and think I write about Rowan too much, or who get tired of reading about how I'm feeling... but this is really how it is, I guess, so it's what you get.
So much has been good lately; my relationship with Steve has gotten better and stronger, Lily is great and is an expert at using the potty, and Rowan's been healthy and seizure-free.
I realized the other day, though, that this won't last forever with Rowan. His seizures will start again- it's just a matter of time. I was telling someone it feels like I'm just waiting for the dropping of the other shoe. Then this weekend I thought I noticed some more Infantile Spasms...
We adjusted one of his medications again and he seemed really happy this morning again, which was nice to see. I know we'll be fighting seizures forever.
I've been thinking about our little boy so much lately. Those who know us know that Rowan's not the best sleeper. At all. In fact, he really sucks at it... So we've tried something a little different with him to try to get him to sleep better and so he doesn't wake Lily up: We put his mattress in our walk-in-closet and built a little pillow fort around it so he can't slide off. He gets his space and Lily gets hers. We did this so we could try to re-train him to sleep without waking up every two or three hours to eat or to play. He seemed sturdy enough to try this and it worked well for a week or so. The past few nights, though, he's been pretty fussy and just can't seem to sleep for too long at a time. I go in when he's crying at night and the look on his face is so sad to me- but I'm not really sure why. I guess I just wonder what he's thinking or how much he understands. I hope he's not scared, is my point. Not of the closet- but just of the dark and of lying there...
I was thinking last night about the day we found out, again, and was just so sad. I guess I'm just sad today... but a good thing has happened, I think. A woman emailed me who lives in the area. Her daughter has a diagnosis surprisingly similar to Rowan's. Reading her blog broke my heart all over again... for her and for us.
Don't get me wrong, I see the good- I have to. I count my blessings and I try to stay positive. It's such a strange dance- the one with reality and hope and sadness and a positive outlook. I guess one just tries to not stay in one place too long- it's good to look at all sides.
My grandma and I talked the other day. She's amazing. She makes me feel like I'm doing a good job and I think the fact that she's proud of me makes me want to do better.
So again, I'll do better.
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