Wednesday, February 8, 2012

Angel Words: Volume 2

This post will be short and sweet. :) Mostly because my poor angel has Hand, Foot, & Mouth virus, and it has spread to everywhere on her body! So we are back to the doctor again today!

Poor sick angel...

Today's word about Angelman Syndrome is ACCEPTANCE. I cannot tell you how many nights, last night included, that I have laid in bed and thought about what my life is now. What the life of my daughter will always be. And how that one little gene missing on that one little chromosome has turned our whole world upside down! But if that is all I thought about, I couldn't move on, couldn't live, couldn't enjoy my daughter for the blessing and the amazing person that she is!

Acceptance of something like this is hard. Harder than anything I could have imagined. And I still struggle with it. I think because somewhere in me, when I think about accepting Ava's condition, I think that it means that I am giving up. Not hoping and praying for a change, a miracle, or a cure. But I know logically that isn't the case at all. We can accept a reality in front of us but still have hope that it isn't a permanent reality. And the truth is, AS will very likely be cured or at least great therapeutic drugs that suppress the condition will be discovered in Ava's lifetime. I pray that that also happens within Cole and I's lifetime. Because we would love nothing more than to hear Ava's sweet little voice talk to us. But we also know that if that doesn't happen on Earth, that our permanent reality of Heaven will not include Angelman Syndrome!

So I choose to accept my daughter's condition, but not resign to it.

I need to get my day going (we had a rough night and Ava and daddy are still snoozing away) but I wanted to leave you with some sweet pictures that I took- and mind you this child was running 102.5 fever at the time. Not much can slow an angel down!!!

Dropped her paci...because she was being naughty!

She loves to get into her changing table goodies!

And next weekend is Ava's birthday party! Don't worry, I have a professional photographer coming to take the pictures, but here is a sneak peek. It is taking over my dining room!!!! Ahhhh!!!!!


Marenka said...

Hi i'm a AS mom of a cute 3 year old boy. We heard the diagnosis in may of last year and i'm still strugling with our new life. I love, your blog and think it's great you are being so positive. All the best for you and your angel. Marenka from holland