Not For Lack of Want

Posted: April 18, 2013 in Uncategorized
Tags: , , , , , , , , , , ,

The Great Strides Walk is coming up quickly this year and I’ll be completely honest, I haven’t done a thing to promote, raise money or prepare. I did design t-shirts to sell, but haven’t ordered them. I have registered, but my balance is still $0.

Last year, I was all up on it. I made a video for the schools. Hit all the schools up to have it shown and educate the kids on CF. I designed t-shirts…pushed them, sold them, shipped them. We all showed up at the walk and had a great time (despite a severe bloody nose for Colby and a trip to the ER…bleh).

This year, I am less than motivated. Not for lack of want, but we have been having a great year and been crazy busy with ‘normal’ life. We’ve only had one “tune-up” and they sent him home a day early on good behavior. Well, ok, not really. But, for excellent PFTs. Haha.

Last year, CF was very real in our lives. A “tune-up” every 6 (SIX!) weeks and constant worry that our hard work wouldn’t pay off.

Well, it did! He went from lung functions in the 60% range to a [freaking] 99%!!!!!!!! (There aren’t enough exclamation points in the world to express my sheer joy!)

So, am I taking that progress for granted by not commiting this year to record charitable donations? Am I a lousy [CF] mom for not pushing shirts and raising awareness? It is a serious need in our little CF community. Donations go directly to research and progress for a cure. I know it is a big deal.

Maybe I just need a break from all the hub-bub of CF this and CF that. Last year was exhausting. We had to plan around all of his scheduled admissions and work so hard to get him back up to where he needed to be. We did a month of home IV’s, which I hope to never have to experience again. Early, early mornings and late, late evenings…little sleep and infinite worries that I would fail him in some way by not doing it perfectly. The pressure was so immense.

Granted, it is only April, but we have been running at a good pace. Nothing crazy to deal with, no ‘exacerbations’ and a bit of a plateau in worries. It’s been so nice. I try not to stress about what’s around the corner, however, I know there is always a chance that things could swiftly shift downhill. Ah, the joys of CF.

Maybe I can will myself to get motivated about it, maybe I will find rest in where we are right now and keep pretending that everything is great. I won’t know until it comes down to the wire, I’m sure. (I work really well under-pressure.)

For now, I am just going to accept the peace that comes with this moment, in this quiet. It is so rare. The panic and fear will return, I am sure of it. But, for now, it is nice to focus on schoolwork and friends and housework and gearing up for another cross-country season (he is so ready to start training again).

Cheers to a ‘normal’ year for us….and prayers that this holds for a while…..





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