Wednesday, August 11, 2010

Cystic Fibrosis Does Not Belong to Me

This poor blog has been sitting for a week and a half waiting for me to add photos to it. Seeing as it going to take me a couple more days to get through the ones I have, I'm throwing this up on the page without them. I'll make it up to you!

As usual, when I've been dwelling on something less that brilliantly positive, I've hesitated to share. I don't want to be dark and heavy. I don't want to spread that junk, no sir, not me. But in the interest demonstrating honestly how we come to terms with things, I know I need to share. And as always, it makes me feel strongly the need to remind everyone that I'm aware just what an extraordinary love I have in this family and this life. I'm not a saddy sadpants.

However, just when I think my bright and shiny, upside-only attitude is firmly entrenched and unbreakable, I get blindsided by something I hadn't realized I'd need to deal with. My usual response to that is to deny it until it decides to put me on my ass for a day or two and face it. And it always seems to sneak out of the most unlikely places.

Last time I blogged I asked for intros and links to others in the CF community. I got a few and also struck out to find more ways to 'meet' others traveling the information superhighway in pursuit of like-minded company. It didn't take long to find the kind of voices I had been looking for. I have found blogs of other mamas, friends and family, spouses. The brightest, most resonant voices, however, are those of a few adult CFers I have come upon. Strong personalities, fabulous attitudes, genuine sentiments, and a willingness to share their lives. Cue the "hallelujah" chorus! Proof positive that my baby can grow up and lead not only a full, but an extraordinary life! Not only that, but these folks have been friendly and welcoming without any of the 'oh, poor dear' that I tend to encounter from the general public. I swelled with a kind of 'these are my people' pride, feeling like I'd made some sort of homecoming.

Slowly, up from the depths, quietly, stealthily, the realization tunneled its way from my subconscious...they're not 'my' people. I mean, the community. yes. the families, yes, all the wonderful people...yes. But not 'mine'. Jackson's. Cystic Fibrosis isn't my disease. It's Jackson's. I'm not the one with a degenerative disease. My chubby little smiling, giggling, jumperoo maniac of a sweet salty baby is. His meds routine won't be my burden for the rest of my life, it will be his. The physical pain won't be mine, it is his. Cystic Fibrosis does not belong to me, it belongs to my son. That's the knocked me on my ass part. After pushing it back and trying to strangle it for a few days, it got the better of me and I vented to a few close friends and let myself break down a bit. When I was no longer denying the feelings they had much less control over me, and I realized I had something valuable to take away from the epiphany.

CF isn't my disease. It's my cause, but it's not my disease. I'll never be the one living with it the way my son will, and as much as I wish I could take the suffering for him, I can't. It's a part of his life that right now I know better than he does, every cough, every poop, every medication, and every thump of his chest percussor is under my control. As he gets older, I won't be able to exercise control over any of those things, and will lose the feeling that I have any control over the disease. While that seems like a terrifying prospect, it serves to remind me how little control we really have over anything in life. We don't control our genes, who we're born to, where we start out in life. The only control we really have is how we choose to react to things. We can't control the rain, but we can choose to carry an umbrella when the clouds roll in.

It's good for me to have had this realization. I shouldn't start out on this journey thinking I can control the path we're on. I need to remember that while it's my point of view, ultimately this isn't a firsthand experience, it's me talking about my role in my family, my son's life, and ultimately his fight against CF. It's not all about me, and eventually I'll have to learn my place in his fight. I think we all need to be reminded of that sometimes. It's unbelievably hard to realize I'll be an armchair quarterback in my sons fight against CF when all is said and done.

If you want to check out my newfound 'inspirational voices, checkout CFFatBoy, RunSickboyRun, A Matter of Life and Breath, cfstinabug, and CysticGal. There are several others I'd like to list right off the bat also, but I don't want to overwhelm you! My world and my heart have grown by leaps and bounds in the short time I've been following these people (and others)

now, to get my butt in gear and tend to this neglected blog and my lonelyflickr account.

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