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.
Just a moment
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.
The Unknown Cystic 
Ok, so I didn’t say it in the last post but I will say it now “Fuck You CF”. I’m pissed that you didn’t get to the dance, as these are special moments for a father, but on the other hand I’m pleased to see that it didn’t manage to spoil your weekend totally. I think it’s time for you to get BlackOps for the Wii so I can play you online and beat the hell out of you, trust me it’s a good way to release tension.
Sean, what a mouth you have cussing on my site. š You bad boy. I’ll have to ban you from comments. Ha. I’d have to ban most of my posts for that. BlackOps, huh? I may check that out. BTW, you’re the one who would get the beating. I’m sure I could master the game quickly and deliver some good old USA hurt to you. John
Amen, Unknown. Amen.
When I was growing up, I had a friend Dave, whose father had a very bad illness that I won’t go into. His father survived until a few years ago (15 yrs later?). As we grew closer to Dave, we all came to know that his father spent most of his time in a lazy boy in the living room doing his treatments and relaxing, that his father did not work though they were well-off financially.
Dave was always awkward when he talked about his Dad, but we all knew that the best parts of his personality came from this relationship, and from his added responsibilities as a young person due to his family situation.
I know that having his father be ill, made Dave into the compassionate, sensitive yet decisive, strong person that he is today.
Just a thought.
CG,
I am going to go buy a Lazy Boy and sit in it every day from this point forward. Sounds like a good plan. Yeah.
I hope my battle with CF will make my daughter stronger. I hope. Sometimes some adversity is a good thing, especially when you’re an only child.
Thanks for the thoughtful comment. I’m following your daily exercise plan. How about shooting some roadside signs when you go out?
John
That. just. sucks. There’s no way around it. And this time my words won’t attempt to make it better- I know exactly how it feels to miss a big dance or stand behind the plexiglass. Kids are tough- at least that’s what I tell myself again and again. I hope your daughter had a wonderful birthday, and may there be many more birthdays for all of you to celebrate together. Heavy heart, reading this post.
Lizi,
That good news is that I’m not in the hospital – yet. I’m hanging tough – so far.
Thank you for the good wishes. They make a difference.
John
I’m so sorry you missed the dance. Take care of yourself and maybe y’all can practice dancing at home, then take her to a real ballroom and dance! I know, I know, I watch too many movies.
MAL, It’s all right. I usually go and stand there while she runs around with her friends. It’s having the option of going taken away by CF that is bothersome. One can never watch too many movies. I take that back I did and screwed up my life. John
Its funny (well not funny but you know what i mean) that you are talking about plexiglass…..plexiglass is nearly indestructible. You can beat on it, hack away at it, stab it, try to torch it, and without a flame thrower or some serious bullets, it barely shows the marks of the battle…..seems pretty hopeless when you’re standing behind it alone with only your bare hands trying to destroy it…..but what if there were a hundred, a thousand, ten thousand people with you…..it would probably move a lot more quickly. Im standing next to you…..hacking away. We all are. One day, my unknown friend, one day there will be no more plexiglass.
My best to you always and much love ~j
Juli, What a super cool comment. I am with you in breaking through, but more for Natalie’s future and other kids and young adults and my friends. They’re the important ones that we must fight for. I still appreciate the thoughts. I’m so lucky, and luckier still to have met you – virtually, at least. John
I agree with Juli. I’m standing next to you too, hacking away at that f’ing plexiglass.
I’m really, really sorry to hear that you had to miss the dance. But I am very glad that at least you got to be at her bday party. My hearts aches for you and your daughter… I know there is so much our own daughter will have to accept as she gets older and realizes the limitations of her daddy. But I think he will always reign as king in her eyes – CF won’t diminish that. Just as I’m sure it doesn’t for your wonderful sweet-pea either.
Oh, and I’m also sorry that you didn’t get to punch any ungrateful healthy dads… as that would have made for a GREAT blog post.
Love.
Liz,
Thank you for the very kind comment. I’m doing my best not to screw up my daughter too much. It would have been great to have two kids so I could apply everything I learned from my mistakes on my first born to the second.
No punches. I stayed out of jail and avoided a lawsuit, which were the benefits of not going.
UC