Friday, March 26, 2010

The jig is up!

Im a faker, a big fat faker of the worst kind. Im not as strong as I have been pretending to be. Some of you knew that already though, right? If not then let me tell you-Yep, its true. Im not that brave and not that strong. Im actually really freaked out. Im scared and Im sad and Im angry.
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.


mj said...

at least you're confessing you're a faker. i'm not there yet. i think some people still think i'm really strong and brave. that's so not the case. i cry so much. in fact, right now, i'm trying my best to ignore leah while she tries to put herself to sleep because i know i won't be able to figure it out and i'll just be more upset. ahhhh. i hate rett syndrome. it sucks.

better go help leah.

Owen's Mom said...

It is so weird that you posted this today. Owen was hungry and I had no idea what he wanted. It was so frustrating..

I think you're doing amazing. Avery and Nolan are so very lucky..

Dawn said...

I am in tears reading your post because I feel the same way! I hear comments from friends/family about how strong they think I am, etc. That's not true, I have just gotten better at hiding my pain. I'm sorry that Avery had a rough night. :( I wish that I could offer some very helpful advice, but the best that I can say is continue to take it all one day at a time!

Tina said...

I can empathize with you! The hunger thing happened with Bo about a month ago and it took him waking up crying three times in a couple hour period for me to figure it out! What a feeling of helplessness!

Lindsay said...

Oh man - I wish I lived closer so I could give you a BIG hug & tell you that you are a fantastic mother & you are doing an awesome job. I know you are scared, but remember, its totally natural to be scared of the unknown. Don't beat yourself up for having normal feelings. I know that is much easier said than done. You have done such a phenomenal job being positive & upbeat for your family. Continue to do the best you can do ... that's all anyone could ever ask!

Sending you lots of hugs & love from SoCal. xxoo

The MacDonald Family said...

I think this post could be true for most of us - atleast it is for me. I've cried and screamed and spent more nights awake in worry the past 4 years since diagnosis than I have in my entire life. I'm so sorry Avery had a rough night, I've been there. That is the most frustrating thing about rett, the not knowing. Big hugs to you and Avery!!

Kelly said...

I think any Rett mom that says they do not live these exact feelings would be lying. We all do - we all hurt, we all get mad, we all as why, but most of all we all try our best to do the absolute best for our girls - Avery KNOWS you are doing your best - she KNOWS you love her and will always try to help her. As mother and daughter you will muddle through the lack of communication and work together. Will it be easy - heck no! Will we still cry (a ton!) heck yeah! But that little angel is so loved - do not ever question that - she doesn't!!!! Hugs to you Erica - please know that you can call me ANYTIME - heck - I am probably awake too! I love ya girl!

Colleen said...

You are not a faker, you have just been given a task that is bigger than anyone can really handle. You are amazing and both Avery and Nolan are so lucky to have you! It just really sucks that the odds are stacked like they are, good for you for crying, for feeling, for being there, that is the most difficult and important thing that you can do.

Erica said...

thank you all for your comments. it means a lot to me! I feel so much better now-was just in a little valley for a sec.
love you all!