Thursday, October 27, 2011

did you know....

that i'm this close to tears at least 10 times a day?
that I wonder every day what Avery would be like if she were typical? what our lives would be like?
that nearly EVERY time I see a typical little girl, a tiny little bit of my heart just breaks?
that every day I wish we could go back in time and make Rett syndrome not a part of our story?
that it has been over a YEAR since we have heard Avery say Mommy or Daddy?
that Avery truly has lost ALL of her words?  that she can't even really say Yeah or Bus anymore?
that I cant look at baby pictures without thinking "that was before Rett syndrome" or "how naive was I?"?
that I panic a little deep down inside when anyone tells me they are pregnant with a little girl?
that I also say a little prayer that the unborn little girl will NOT have Rett syndrome too?
that Avery is 5 and takes 3 different medications?
that Avery is 5 and cannot really do a single thing for herself?
that Im really angry that this happened to us?
that I constantly struggle with patience and acceptance?

but.....did you know....

that we have an amazingly supportive circle of family and friends? (that deserves its own blog post)
that old friends, just by telling me about their triumphs and struggles, make me feel "normal"?
that my newer Rett/special needs friends make this crappy hand playable?
that seeing Nolan and Avery chase each other and laugh can totally turn my day around?
that besides missing a chunk of genetic material Avery is super healthy and smart?
that hearing Avery giggle makes that huge rett wall crumble down all around me?
that Avery surprises us most when we feel like something will go horribly wrong?
that she danced with her cousin and brother the other night?
that I am working on being a more patient mom/person?
that I have hope every day?
that there are seriously smart people working on fixing rett syndrome right this second?
that we are lucky we have the life we have and we know it (even if we might need reminding every so often)?

that this was totally going to be a pity party post but I changed my mind!?

 our family celebrating nephew Jackson's 1st birthday-Avery has no time to look at the camera, she has cake on her mind!


Momttorney said...

I wish all those things for you too, mama. And since I can't give them to you, I'll just promise to keep hoping right along with you too. Every day.

Gamma Karen said...

Every time I read your blog I want to cry, and then just as quickly, I realize yet one more time what an amazing woman and Mommy you are. I'm so grateful for you and your beautiful family, that God placed you into my life. I have many wishes for your family and Avery of course, but wishing doesn't make changes. So, I'll still pray, a lot, still wish, and still do anything I can to help. I love all of you. You all make this Gamma Karen laugh and cry, but most of all, you make me happy.

LauraLew said...

Haha, great post Erica. That pretty much sums up the roller coaster of emotions we go through every day on this wacky journey. You are one of those people that make this hand feel playable for us :) - xo

Colleen said...

Your post is bipolar just like our lives are :-) Glad to hear that you are looking at some many differnt aspects of the whole thing and when are we going to dinner? I miss you!

Anonymous said...

This just made my day. Loved it.

mj said...

did you know that this post brought me to tears? it did. i love you.

Anonymous said...

I have tears running down my face. Such a beautiful post.

Marta said...

Hi Erica! It's so nice to "meet" another mom. First, Avery is just gorgeous! This entry really resonated with me. It's amazing how something can break your heart and make it feel so big all at once. Hugs.