Posts Tagged ‘tune-up’

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…..





I have said before what a daunting task it is to be a mother. I never knew how difficult it was. My mom made it look FAR too easy. The house was always clean and squared away, dinner was always ‘presented’ to us all gathered at the table each night, we never had a lack of clean underwear, and we even enjoyed many a vacation to Disney World, or Six Flags or …..

These are all things that I can’t even FATHOM accomplishing ONCE, nonetheless, EVERY day! I am lucky to have toilets clean and beds dressed. Dinner is a fly-by invention that is eatean in shifts, at best. The laundry is a constant struggle to keep up and vacation?? Seriously? NOT even on the radar.

Here, we struggle with the normal juggling of a family of three kids, a psycho ex-husband, a family pet, and dysfunctional families…except mix in a load of mourning for the death of a daughter/step-daughter/sister, a FULL cup of Cystic Fibrosis and the medical regimen, and a dash of related regrets and stresses. I often feel like I am just barely treading water a lot of the time.

And so, enter the past few months. We have conquered baby girl starting Kindergarten and mommy’s subsequent depression, resulting in the addition of a puppy to keep her company. We have started cheer and cub scouts and RA’s; bussing kids to and fro, but enrich their experiences, I must! Signed up and paid for three field trips, and agreed to chaperone each of them (can’t do just one for fear of jealousy and broken hearts!). And administering benadryl, claritins and breathing treatments daily to attempt to survive the cold season.

I am exhausted, to say the least. My husband and I flirt through out the work day, fantasizing about being intimate again. Only to have finally put everyone to bed and sit to relax, we are too tired to take the time for each other and fall asleep on the couch; awaking with cricks in our neck and knots in our backs. Alas, another day of the same chaos and messy juggle.

Add to this current juggle, the dilemma I currently face. The internal dialogue, the fear of failure and mistakes are haunting me as I type. My eldest (boy, 9) has CF and is currently fighting hard the same colds that the other two are weathering. Only he can’t fight when CF keeps him held back. It is time for a “tune-up.” The infamous 10 to 14 day hospital admittance full of breathing treatments, chest pt’s, finger pricks, and IV antibiotics. All of life and obligations are placed on hold to get him back up and running at his normal tilt. These visits normally come with more surprise and are suggested during our clinic visits (every 3 months), but every so often, I can tell that it’s just time.

So, here I start on another juggle. The placement of the younger two with trustworthy help for the next few weeks, checking in from afar, while I tend to my tough little CFer. Still, the homework must be done, the field trips still attended, the bills still paid, the husband brushed past in frantic travel from one place to another, the laundry still has to be seen and the dog still has to be fed. STEP RIGHT UP! TIME TO SEE THE SHOW!