On May 1, 2010, I started this blog. One year ago. I went back and read my first post. I obviously didn't stick with calling CF sixty five roses. The more we got familiar with CF, it just seemed easier to say CF. That post is full of the textbook jargon and statistics on what CF is. I thought that tonight would be a good night to post on what CF is to me now.
Tonight, CF is keeping me up until 10pm to hook Drew up to his IV pump and get him his [every 8 hour] dose of antibiotics. It will wake me up at 6am too. CF cost me $5 at Target tonight on sani-hands wipes which I use like water to disinfect Ella after preschool, clean off a dirty Lily after she empties trash cans and plays in the dirt, and wipe Drew's hands before and after he eats or whenever he puts his hands near his mouth. CF has me looking for a trustworthy and reliable babysitter who can watch the girls while we have to take Drew for one of his regular bronchoscopies or doctor appointments, or who I can trust to administer enzymes in the right dose. I hardly trust grandparents to do that, so it might be some time before I find a babysitter I deem responsible enough to do that. CF takes my Ella time away from me when the twins nap in the morning, as I spend time on the phone with nurses or dieticians trying to figure out how we need to adjust enzymes and whether the change of form in his poop is from antibiotics or another reason. CF is Ella telling the kid at the park "good cough!" when hes got a wicked cold and is spreading germs all over the place because he's not covering his mouth, because she always hears us tell Drew "Good Cough!" when we're whacking him on the back trying to loosen up the mucus that has him sounding like a 65yr old pack a day smoker.
CF isn't my life, but its so much of my life. I do my best to find balance, but get terribly frustrated when we want to have a family night going out for ice cream, but an IV antibiotic schedule prevents us all from participating. There's always a new drug being added or a change we need to adjust to. While I hope for it, I don't think that the normal that we use to know will ever come back.
I try not to think of CF as a life shortening disease. I try to think of it as something Drew just has that we just deal with. I don't often wonder and worry about what is going to happen. I really just try to take things one day at a time. I remember thought, when he was first diagnosed, going through the rest of my life in my head and thinking about all that we'd be giving up. No more vacations because we couldn't be away from his doctors. No playdates with friends who could carry potentially deadly germs, like the common cold -something annoying for a kid or the parent of a kid without CF, but simple detrimental to the health of Drew. I remember thinking that I'd never be able to go out with my girl friends, or that Martin and I better get use to never going out again because we have to do his airway clearance first thing in the morning and last thing at the end of the day. And on top of all there was to do and manage, the sheer cost of having a child with a disability was just so overwhelming. But it all goes through your head right at the beginning. And now that I'd had a year to live it and get to know it, its so not what I had imagined it to be. For our 4th anniversary, we got a babysitter for the girls so that we could enjoy a take out pizza together in Drew's hospital room, allowing us to spend an hour together on a day so special for us while not having to leave his side. It was perfect.
Sure, things have changed. But to be perfectly honest with you, they've changed for the better. I'm a better person. What I've learned and what I've gained through this experience is unparalleled. Perspective and priority has changed. A while ago, I had posted the lyrics to a song by Michael Buble called "I Just Haven't Met You Yet", and stated that they describe how I feel. Here they are again:
"...And I know someday that it will all work out. You make me work so we can work to work it out. And I promise you kid that I give so much more than I get....I might have to wait, I'll never give up. I guess its half timing and the other half's luck....And I know that we can be so amazing. And baby, your love is gonna change me. And now I can see every possibility..."
CF sucks. I hate that we have it, that we have to deal with it, but I can't change that fact. I can only change my attitude about it. I take every day one at a time. I try not to think about all of the what-ifs and statistics. When something new comes up, we figure it out. Trying to manage his whole life, our whole lives, from one given moment in time is unreasonable and unrealistic. CF has opened new doors in my life. I've met some wonderful people that I wouldn't have ever come to know without it. And who knows, maybe we got Drew because the CF world needed someone like me ;-)
This past year of the blog, I've reached over 14,000 people. I've gotten emails from all over the country, sharing their stories with me like I've tried to share mine. And I love that so much. I hope that this next year I can continue to tell our story, our journey with CF. I hope I can continue to have a positive impact on the CF world. Thank you to everyone who has continued to bear with me and support me with my fundraising efforts. I hope many of you can come to walk with us, in whatever city you live in. Team Doin It For Drew is walking in 8 cities and we'd love for you to be part of it.
Happy Anniversary, blog. I'm toasting you with a hefty glass of red.