Wednesday, August 25, 2010

A Great Day!

I don't usually share this much feeling and emotion, but everything really smacked me in the face last night, so here goes.

So, getting Juliana's diagnosis in December of 2008 was definitely a very tough time for all of us. I have struggled with the obvious questions over and over in my head. Why us God? Why did it have to be my little girl? What are the odds? It's just not fair. Why can't Olivia have a playmate, someone that can keep up with her, chase her, tell secrets with? All the things you expect sister to do. On our most difficult days these questions resonate even louder in my head. But lately, I am starting to see things more clearly. I put Juliana to sleep last night (after rocking her several times) and looked at my two PERFECT little girls and found myself asking "Why me?" but this time I meant, "God, why did you choose me to entrust these perfect little girls? I'm not worthy."
I have Olivia, this girl has so much spunk and personality. She tries to be so tough on the outside but has a heart of gold who loves her sister more than anyone and doesn't see anything wrong with her. She wants to do everything just like her sister. She talks to her despite the fact that she can't answer with words and lots of times she tells me what Juliana is thinking. She thinks about constantly. She is strong willed and will put up a fight for the things she really cares about (which at this age could be as simple as the Backyardigans, but some day it will be something life changing). She is so smart, very independent, very opinionated, very helpful, extremely girly and gives the best kisses in the world.

Then I have Juliana. The girl is a fighter. Despite her soft and sweet exterior, she has such a strong spirit. She changes people. Everyone who has ever met her falls completely in love with her and feels this special connection to her. She is also so smart, patient and the best teacher I have ever had. She is teaching us all so much every day. Olivia will grow up knowing compassion, patience and unconditional love all from her amazing sister. She understands everything and is learning so much every day. And she loves school! She has the most AMAZING giggle that is also extremely contagious and a smile that will melt your heart.

Not to forget my amazing husband, partner and BEST Daddy in the world! We are officially the world's best tag team!

As for the Rett Syndrome, I still HATE it, but how awesome will it be WHEN we find a cure, and I hear her voice for the first time and see her run into my arms. God only knows what the future holds; I can't even begin to dream of all the things to come in this life.

So yes, today I feel so lucky to have these amazing girls that I can't believe God has entrusted to me. I know that you reading this may think that I have just stated the obvious. That I should have known those things all along. And I have known them all along, it's just hard some days to stick to that and not fall into the "why me" syndrome. I know that some days the doubt will set in, and those questions will creep back, but hopefully I will look back on this post and remind myself how lucky we are.


  1. Beautiful post...thanks for the reminder to enjoy life for what it is and the beauty of everyone we love.

  2. What a beautiful story of 2 amazing, cute girls. You and Roger are the best parents. You have a spirit of love that is beyond anything I have ever seen as parents, always working together and picking up right where the other one leaves off.