It has been exactly 1 year since we received Hailey's WS diagnosis. As I rushed home from the doctor and sat at this computer and typed in the google box "Williams Syndrome," I had no idea what a huge part of my life it would become! It is definitely something that I deal with on a daily basis. Just a few days ago a little WS girl, Sophie, with the same heart condition as Hailey, (SVAS) died due to complications from her heart surgery. I can't even imagine what this family is going through it. If you could lift them up in your prayers...
I treasure each and every day that I get to spend with Hailey! As she wakes me up in the morning with "Good morning mommy! It's time to get up! Come on you can do it!" to literally her 20th time asking if she can have a cookie! We are so blessed to have her in our lives and to be her parents! Hailey has her annual tests and her cardiology exam coming up on Nov. 4th. (I am still bitter that for 2 1/2 years the California doctors led me to believe that Hailey had a simple heart murmur when we were later informed that it was actually a SVAS) We are so lucky not to have hardly any medical issues at this point. As I check out my WS friends on Facebook or other blogs...most kids have so many health issues!
I do however, still feel clueless in so many areas. Knowing when to step in and when to let her be, when to tell people and when to let them think what they will, when to discipline and when to let go...I'm sure as a parent in general so many people deal with this. Hailey recently had a school field trip to a nature exhibit that I attended with her. The guest speaker didn't know that she was special needs. As I stood in the back holding the baby...anxiety spread through my body as the speaker had to tell Hailey numerous times to sit down and not to touch her props. "Do I go up there...do I intercede, do I let all the other parents think that I'm a bad mom and that my child is crazy or do I just let it be?" I mean it is just a silly preschool field trip that at the end of the day doesn't really matter in life at all! I gave in, handed the baby off, and sat amongst the children with Hailey in my lap so that I could help her to be what I wanted her to be at that moment, just like the other children. We then went on a nature walk and as I was calling Hailey's name for probably the tenth time to catch up, one of the teachers' looked at me and said "we just love her so much and are so lucky that she gets to be at our school." That was the moment (for that day) that I decided it's OK for her to be different and her strengths out weigh her weaknesses. It is, however, something that at those special moments, I have to remind myself of everyday!
BIG NEWS: Hailey qualified to take the bus to and from school everyday!!! They pick her up at our house at 11:10 and don't drop her off until 3:45!! It is unbelievable how much I get done in that time! (I will also be able to work!) It was always such an ordeal to take her to school (10 min drive) and then walk her to the back temp building...esp with another baby!!!! We are so thankful for the bus now!! I was definitely shaking when I took this pic and a tear might have shed as I headed back inside!!!
On another note...if you could be praying. Nate's boss's wife (Nate and his boss are very close) just found a huge cancerous tumor in her intestines. It's too big to operate on and she has to take a pill for 3-4 months to try and shrink it. They need a miracle...good thing I believe in miracles!!! Nate was just starting to slow down a bit and I'm sure he will have to step it up to help out!
To make things a little bit crazier...I got a job! As a server at an adorable Mexican Catina in a nice new area outside of Denver. I work 3ish nights a week and absolutely love it!!! It gives me a chance to have a life outside my life (ha) and Nate a chance to spend some catch up time with the girls!
Here's a few videos of my honey's... we'll catch ya'll later! (Connie they are mostly for you!! We wouldn't want you to miss a beat!!!)