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.
Thursday, August 12, 2010
So, sadly, I am writing this post on the LAST Friday of my summer vacation. I have had SOOO much fun this summer with my girls. They are growing up way too fast. We had quite a jam packed schedule but I wouldn't have had it any other way. So just to give you a glimpse of the fun we had, here was our schedule this summer.
Monday: Juliana had Occupational therapy, Physical therapy and Speech therapy. Luckily she gets pulled out for therapy at her daycare, or else I would be a taxi running back and fourth. So while Juliana was working hard, Olivia tried her hand at gymnastics. Here she is doing the splits.
Tuesday: This was the day that Juliana went to Aqua therapy. This was new and very fun because Juliana LOVES water. These are her therapist Melanie and Nee Nee. They are wonderful and really worked her out.
Wednesday: This is Juliana's second day of the week for therapy at her daycare. So, while Juliana is working hard at school, Livi has been taking a Jazz/Tap/Ballet class. She has been working very hard for a recital coming up the end of August. I think she's a natural (even though she's a little clumsy)
Thursday: Thursday was nice because it was the only day that we didn't have something scheduled. So it was our day for swimming, or watching 3D movies,
Or riding a bike,
Or having a play date with her friend Faith.
Friday: Friday was one of our favorite days of the week, because Friday is the day we go to music therapy. I think this was one of very few activities that both girls could share and enjoy equally. When we are at therapy it's all about Juliana. And at dance class it's all about Olivia but music class was something they shared and you can't imagine how much both girls enjoyed this class. Thank you so much to Ms. Karen, we are so sad we will not be coming once school starts. Can't wait until next summer!
Thursday, August 5, 2010
Hey Gang - just wanted to share that Juliana made the front page of the newsletter from Our Children's House, the daycare where she receives her therapy as well. We love you OCH Irving! Click on the link for more information by Juliana's picture to read all about it.