I had every intention of just giving up for a bit. I felt like my brain was about to burst and I couldn’t possibly absorb anything else, I was wrong. I hadn’t considered the option of hope. Since my last post I have seen little and big great things, things that have given me hope and I wanted to share them with you, just in case you needed a little and also so that I don’t forget (I have a very short memory). Friday Chloe was amazing. We sat on hwy 1 with the windows down, basking in the sun blasting the Beastie Boys, per her request. Later that day we had a dance party and she photographed her sister doing wonderful and frankly inspiring things, see below.
Saturday I got to participate in a project that a newly diagnosed family, along with the amazing people of Katie Clinic put together. I was honored just to be a part of it. It was a beautiful reminder of the support that we have in this very scary world of rett syndrome. If something goes wrong, I know exactly who to call and that they will help, that is unbelieveable! The work that they have done in both research and advocay has paved the way for Claire to have a thriving educational setting and that is something that I take for granted and I shouldn’t. Sunday was a day full of small miracles. Jared took Claire on a bike ride leaving from our home and they both came back just beaming with joy. As a dad I know it is hard for Jared and now he can take her on bike rides, this.changes.everything. Then we all went to the mall to get the new Hello Kitty Vans, it was nothing exciting, but sometimes we can do small things without it feeling like we are moving a mountain and that in itself is a big thing. Monday was my day for chores and I love that I can go to Costco and have a project big enough to take distract me from all of my thoughts. As I was leaving there was a homeless man on the corner. As I pulled up to the stop sign he was sitting at I asked him if he was hungry and he said yes. I was thrilled that I had a meal bar to give him instead of just driving by with my car full of groceries. That one little interaction seemed to untangle so much. While I often feel overwhelmed and at the same time guilty for not being more thankful for what I do have, I am doing what I can. Loving the girls as well as I can, participating in my community as well as I can and that’s alright. That’s alright. That’s alright. I had to see it over and over in an attempt to convince myself of this.