By far the best part of today was the camp talent show! I had to fight the tears the whole show and it wasn’t even my kid up there on stage. The stage is such a vulnerable place to be and to watch these kids stand up there and put forth their talents and interests is so heartwarming. Then you add in the fact that many of these kids have a variety of special needs, including battling a Brain tumor…and it is truly inspirational.
I had a mix of emotions throughout the night and I could see I was not the only one. There were times, watching a brain tumor kid find their place up there singing dancing telling jokes, when I felt such hope. For the first time I could imagine Kai someday doing these things. Finding his own way to participate, communicate and enjoy the world around him. I hate to say this is the first time I could actually picture it, but it was. I live in the here and now with Kai everyday. I do my best to give him a full life, explore, get him to laugh, compfort him, today. Beyond today is hard for me still. I guess I am still in survival mode…and I’m not sure I will ever get out.
On the other side, I found myself equally impressed by the talents of the typically developing kids on stage, but with that came that thoughts that my child will likely never do those things. And they are beautiful wonderful fun things that those kids can learn and enjoy and grow with, that mine kid probably will never do.
So I realized tonight that Kai being here, alive, maybe is enough. I have been so worried about his quality of life not being enough but here I am surrounded by kids who are beating the odds. Kids who have been delt the worst hand, kids who were not supposed to make it past a few months, kids whose lives have been forever changed by a surgery or radiation or chemotherapy, but they are here. And they are living their lives. They learn and grow and teach every day. And they are happy. And as difficult as each day may be they do have quality of life. They are amazing people doing amazing things no matter how big or small.
Make no mistake this is extremely hard everyday for every family in different ways, but everyday they fight for a better day and it is working.
Today I just have a little more fight in me, a little more hope than I did yesterday… And it kind of scares me…