Eve has complex medical needs and we have been plugging along with appointments, therapies and the occasional surgeries and hospital stays. At one point, one of our medical professionals asked if we were making sure to spend time as a family. Making memories is just as important as all the other things we do for her. I took that advice to heart and started to shift my thinking on progress and research to quality of life.
After a particularly hard December, I asked one of the social workers about things to do as a family. Make-A-Wish was the first thing she mentioned to make a wonderful family memory. She sent the paperwork to our neurologist and after a few weeks, we received a phone call. Eve is going to get a wish!
This news came just a couple of weeks after we received our new diagnosis from genetics. It was such a fun thing to look forward to in the midst of figuring out the long term implications of this syndrome. We have been dreaming about what Eve would like. What things would bring her joy. What things she would find amazing. And just that line of thinking has been so much fun.
The boys thought Eve would like a swimming pool filled with vanilla pudding (her favorite snack) or to meet the Cleveland Cavalears. Sorry boys, she is not a basketball fan.
We can’t wait to share the process of Eve’s wish and the entire experience as it unfold.
Join Eve’s wish journey here and see how the story unfolds!