This past weekend was our Great Strides Walk and it went well. Team Go Seamus Go raised almost $4000 and the whole site that day made almost $150,000. So it's a good thing, a wonderful thing, that I know is helping fund the great research that is getting so close.
But I hate it. I feel like everyone in the CF community gets so excited and has a good time but every year I hate it.
I hate it because it reminds me that my son's life literally depends on these stupid walks and begging people for money.
I hate it because I am so worried that one day soon, he's going to look at his face on those t-shirts and not say "Hey, that's cool that everyone is wearing a picture of me" but "What's so wrong with me that all these people are making a fuss?" and "Why are these people making speeches about young people being sick and dying too soon?"
I hate it that I have to worry if he's playing on the playground next to another little kid with CF who has something growing in their lungs that can kill him.
I hate it because it reminds me that Seamus' bouts of sickness seem to be getting more frequent and it is getting commonplace to hear his cough.
I hate it because it reminds me what this horrible disease has done to wonderful people like Eva and Conner and thousands more like my son.
So I'll leave it to other people to celebrate. I just don't have it in me.