Thursday, March 22, 2012

"Rett day"

I'm having a "Rett day" today. Oaklynn has been screaming and crying randomly. Rett syndrome is just a guessing game and I'm starting to realize how hard it is. You start by trying to figure out if it's something small like she would rather be watching a movie than playing. Or wondering if her foot is asleep or if she needs a diaper change. Then once you have gone through the small things you wonder if she is hungry, or tired. Then you wonder if she is in pain and has a tummy ache or if she has a headache. Then because we are in Arizona, I worry about her being stung by a scorpion so I start searching the area to make sure that didn't happen. Then once you've tried EVERYTHING you can think of, you have to just assume the "Rett monster" has taken over. 

You don't want to assume that she is just throwing a Rett fit (crying for no reason) but once you have tried everything, you kind of have to just assume that is it. We are having one of those days today (as we did yesterday) and it's getting to me. Being pregnant and emotional isn't helping either. Crying along with her when she cries does not help the situation!

I am also going off of about 4 hours of sleep due to the "Rett monster" causing her to wake up screaming and crying at night. It usually lasts about 3 hours before she falls back asleep again. I don't go in and get her because there is nothing I can do even if I get her. I just get up at 2am and start cleaning (since i can't sleep though it anyways) and then go back to bed once she falls asleep.

I just wish she could tell me what was wrong so I could help her easier. I try to think I am a pretty patient person so I don't think it's because I am impatient. I think it's more having a hard time listing to your child scream as if they are in pain but not knowing how to help them or if it's even pain or just Rett syndrome taking over. This Rett stuff really is hard work!

1 comment:

The McBrides said...

Hey Whitney, we apparently need to hang out. I just read your latest blog posts and I have been literally on the verge of a mental breakdown today. As you know my daughter has Kleefstra Syndrome and she's 3 and half and not talking yet. I am having the hardest time with her not being able to tell me what's wrong and me doing just like you said starting small and then in the end taking her in to urgent care to get checked since it must be something medical or syndrome related right? She checked out fine so I seriously just had my husband take her away because I couldn't deal with it (first time ever). I appreciate your honesty and for sharing your experience. I feel terrible to see what you and of course Oaklynn have to go through each day, but apparently I needed to read this today to get an outside look. You remind me of the mom I'm supposed to be so thank you for your example. Good luck with everything you are doing great and I hope all is well with your new arrival! -Shelley