No father/daughter dance for me last night. I do have a virus, perhaps a flu, and combined with the bleeding I didn’t have the energy to go. And thus there was no punching other dads in the nose (sorry, Liz).
When I told my daughter I might have to go back to the hospital, she started crying and didn’t mind not going to the dance. We stayed home and played Kirby on the Wii.
Between her sobs, my daughter said it was hard to explain to her friends about having a dad who goes to the hospital. I had to give her the low down about some kids not having dads at all or having dads who were alcoholics or dads who had other medical challenges. There is no norm. Your life is your life and your challenges are your challenges. I’m sympathetic, but firm that she needs to step up and be brave like the female heroes she’s grown up reading about and watching. At 9, it’s not easy to do.
The blood is almost gone; streaks remain. So, I restarted the hypertonic saline this morning. I feel better and am no longer a Tylenol junkie.
For today’s party we went ice skating, which was strange because the ice rink was freezing cold, but it was almost 80 degrees outside. Like walking into an icebox in the desert – and out again – and in – and out.
I didn’t skate. I’m terrible at it and the exertion would have left a lot of bright red blotches of blood on the ice with kids screaming and skating away – think 50s horror movie “fleeing from the creature.”
Instead, I watched from the other side of the plexiglass, which feels like it explains what CF can be like sometimes – a barrier between me and real life. Sometimes it’s the actual glass of ICU or the hospital door or walls. Or the ice rink plexiglass as I watch my family and think that’s where I’d really like to be.
But there’s something in my way.
It’s all good. No complaints. The view through scratched plexiglass is better than the alternative. I’m sure of that.