You know how when you become a parent you have this weird ability to maintain a brave face when your child is hurt or scared or sick? It is a strange phenomenon how that just kicks in once you become a parent and I have managed it many times. Last night was not one of those times.
Avery wakes up several times a night with a little whimper and typically all it takes to get her settled is her paci and an adjustment/re-tuck in. So last night at about 11 ish, while I was catching up on my real housewives and greys anatomy, I hear Avery making some noise. not her usual whimper. I go in and try to get her settled and it escalates. She is asking for her DeeDee (blanket) which she has in her hand so Im thinking maybe she is asleep still. So we lay there and she is really crying now and making this high pitched sound that I rarely hear. I ask her if she wants her sippy cup and she says "yeah". So I run and get her cup and bring it back and she doesnt want it. So then I realize-something hurts. And she cant tell me. and she is scared. And I cant help her. And Im her mom. Im supposed to help. Now Im crying. I try not to let Avery see me cry but I tell her "Im so sorry mommy cant help you sweetie, I know you are trying so hard to tell me something but I just dont know what it is." We move to the rocker and I hold her and she calms down then starts up again. Finally she says "GUHGUH!" We have long thought this might be "hungry" so I said "are you hungry" and she said "YEAH!" So I pick her up and say "lets go get a banana" and just like that-dimples. And while Im happy that is all it is-Im so frustrated b/c thats all it is and I didnt know.
After the banana and some cuddling on the couch, it starts again. This is when I start to get nervous that maybe it's Rett syndrome rearing its head. Maybe this means she is going to regress more. Maybe she wont continue to make progress like she has been. maybe maybe maybe.
But I calmed her down and got her in bed and she fell fast asleep.
So while I TRY my best to be positive and hopeful, in reality Rett syndrome scares me to death. Im scared all the time of what its doing and what its done to my baby. I have done a pretty good job of pushing this fear to the far reaches of my mind and its making its way out. I guess it is just natural. and I know Im doing the best that I can. And thats all I can do.