[Part two of a two-post blog. Here’s part one: https://unknowncystic.wordpress.com/2010/06/22/switzerland-crumbles-neutral-no-longer/]
Dearest Daughter of the future,
If the moon falls from the sky and pulverizes me, or Fox’s girlfriend accidentally mixes radiator fluid in the punch again, or CF takes its final swipe at me, probably on an airplane, please ask Mom to open the file on the computer named “blog post 062210.”
Please read it with her to make sure you do not live your life with a hole in it because I’m gone. I’ll be ticked if you do. I’m not telling you that you can’t be sad. You can. Just don’t let it go on too long. You have my complete blessing to have fun, enjoy life, be happy with what you have, and not be sad for what you don’t.
You have a life to live and a family who loves you. And, one day, you’ll have a mate who will wait on you hand and foot like you’re a queen, just like we, your parents, did when you were growing up.
There is one more very important point I want you to know: Thanks to you being here, existing, I lived a longer and happier life. And you helped me kick CF hard, right where it counts. That is a fact.
From the minute you were born, which finally happened because I made your mother eat PF Chang’s hot mustard that forced you out of your comfy womb house, I had new energy to do my treatments. I became obsessed with taking care of myself because I wanted to make sure I stayed around to see as much of the movie that is your life.
I blew into the flutter like a mad man, up to an hour at a time. My health insurance paid for a vest that I used every day. I never missed a treatment. I ate pounds of broccoli and cabbage every week. I looked for every advantage I could to outfox CF.
I owe my bonus time to you.
Every day I lived with you and your mother was a dream. I’m not sure your mother will say the same thing because sometimes she failed to see just how charming and funny I was every day. But you know the truth, I was.
I want to leave you with one last memory tonight that I never want you to forget: the times we rode our scooters around the hospital grounds, especially down the parking-garage floors like we were breaking the law, thinking the security guards would catch us at any moment. And the time you did a flying face plant when you thought you could ride through mud. PICC line in my arm, bacteria in my lungs – none of it mattered on those scooters. We had a blast.
You helped me give the middle finger to CF and the “thumbs up” to life.
For that alone, I will always be grateful to you. The rest was icing.
Take care of Mom.
beautiful letter, ty for sharing
Totally made me ALMOST cry – I held back. Very beautiful and I know your daughter will love it.
…. no comment ….
OK, so that made me cry! I have to tell you that I have been having a very difficult time with Amy’s post. I just joined the online CF community a few months back, since my health started to decline a bit and I needed support. My gut reaction to the post was that people in this community must see 1) me as selfish and 2) my children as mistakes. UC, your words and the support of all of those who commented have helped me come to terms with this issue. I am going to be writing a blog post about my decision to have children within the next couple weeks. I’m heading in for a tune-up next week, so I’ll probably have time on my hands and emotions running rampant. I hope you don’t mind if I “steal” a bit of the wisdom you have shared 😉 I will be sure to give you credit!
Thanks for sharing these thoughts. I had a difficult time, too. We’re both parents and I think that’s the obvious reason. I can tell you that I feel much better after the two posts I wrote and the intelligent, supportive comments I received. Those are the benefits of a blog and sharing my thoughts. I’m grateful.
I think you’ll feel better after you write about it. You may “steal” whatever you like. I’m honored. No need to credit me unless it helps you tell the story.
Regarding the tune-up, like I said in my comment on your blog, I’ve been in many situations over the years where I thought I had started a new direction with CF. However, I’ve been wrong dozens of times and have rebounded and actually improved. A new med has come along or therapy or who knows. Sometimes I’ve just had to weather a storm for many months before improving. You will, too.
Best to you.