Please accept my most sincere apologies. I've been absent lately, lost in life's routine of nothingness. And in this absence I have found myself thinking a lot, too much probably about The Beast lurking in the shadows: Cystic Fibrosis. Sometimes I get so annoyed, so entirely miffed at its constant presence. I've often pondered how I would describe its location to a medical team, in hopes of cutting it out of me like a random yet festering cyst; somewhere between the grisly knot in my throat and the right hand side of the crown of my skull. It bounces back and forth between these two places haphazardly, like a rogue pinball. Some days I don't feel it as much - these are usually the days I'm consumed with the busy-ness that is motherhood and a full-time career yet other days it ricochets back and forth on its own accord, laughing at me as it splits me from the inside out.
So, after a too long hiatus, I'm back and this time with a plan. I know the glass set before me is not quite full yet not quite empty either. And with that, I remind myself to make a conscious decision to look at raising 2 CFers from BOTH perspectives: Parenting CF Kids from a Glass Half Empty or Full Whatever the Case May Be.
Top 5 Cons of a Glass Half Full (Part 2 to follow next week)
#5: The "What-If" Bandit
The rules of the parenting game changed drastically way too early as far as I'm concerned. My worries about Lola getting enough breast milk and her refusal to sleep on her back like the good pediatrician ordered were cast aside instantly upon confirmation of Cystic Fibrosis. Ever since that day, I notice the physical manifestations of my worry; a few more wrinkles, a few (more?) gray hairs, and yes, even a few more pounds. There is at least one CF related worry on my mind per day, I kid you not. What if the neighbor kids get too close with their colds? What if that cough I heard in the middle of the night was more than just throat clearing: a coming cold? the arrival of The Beast? What if the teachers at school don't catch the sick kid who showed up to class because his parents had no option for daycare? What if my kids end up hating sports and instead prefer endless games of Parcheesi to a good cardio workout? Whatifwhatifwhatif...#4: Tick Tock
Let's face it, staying on top of ANYTHING requires time and a concerted effort. CF is no different. Currently we do 30 minutes of chest clearance PT twice a day. Our CF care team has only prescribed 20 minutes for the kids but my Type A personality usually gets the best of me and I set their vests for an extra 10 minutes. Honestly, I don't know if it does any good for their lungs but those extra 600 seconds of therapy set my mind at ease, at least for that day. It wasn't until recently that we got the second vest machine. Treatment for the kids prior to the arrival of machine #2 took up to 2 hours of each day minimum. I still shudder at the thought of what it would've been like had either child been sick and needed extra vest time. Still, it was a challenge to keep a regular routine due to bedtimes, naptimes, appointments, school, work...aka LIFE.
And like many other diseases, CF is a very expensive one to manage. We are fortunate in that we have excellent health insurance coverage but even so, we are not exempt from the occasional bureaucratic "miscommunication" as was the case with the 2nd vest machine. Persistence paid off and my husband deserves ALL the credit in the world for his hours upon HOURS of waiting on hold, filling out paperwork, and writing letters to mysterious VP's so high up they don't even answer their own phones, only to being told, "No, a second vest is cost prohibitive." I often joke that not only could my husband sell ice to an Eskimo but he could get blood from a turnip...and that he did, to the tune of $16,000 (the cost of the new machine).
PT time aside, we can't complain much and spend our energy trying to keep the kids as active as possible without completely destroying the house. Not an easy feat come January when cabin fever reaches an all-time high. From late March til the first snowfall, "It's an outside day!" is my catch phrase, so much so that Charlie now greets each sunny morning with the same observation. It's great to hear those words come out of his mouth and I'd be lying if I didn't admit to feeling my chest puff up when he runs after the big boys of the block but still I wonder, what would we be doing together if we had those extra couple of hours to piddle away together every day?
#3: DENIAL. IT'S NOT JUST A RIVER IN EGYPT."Well, as far as I'm concerned, they don't have it. I mean they don't even cough!"
-family member who shall remain anonymous
Ugh. I've heard this repeatedly from those who, despite my best efforts at educating them, just don't get it. I've made videos, sent literature, extended invitations to clinic visits, and yes, in my worst moments, screamed like a maniac into the phone everything I know about this disease:
- CF IS A PROGRESSIVE DISEASE- it gets worse over time
- CF HAS NO CURE (YET)- do I really need to explain this?
- CF IS LIFE SHORTENING - the average life expectancy of a CFer is about 37 years old
- CF EFFECTS MULTIPLE ORGANS - "Lungs, pancreas, intestines, liver, you name it! People hear CF and automatically think lungs however, it's much more complex than that. CF is a disease of the cells. It boils down to the cellular level because the cells can't regulate the proper amount of water and salt. In short, when the cells don't work properly, a good portion of the rest of the body is thrown off track too." - definition by Ronnie Sharpe, a CF warrior
It's aggravating, if not downright insulting to think that some of the closest people to me view my diligence and dedication to my children akin to crying wolf. Believe me, I can think of a million and one other things to exaggerate about and CF is definitely not on the list.
2. THE CLOCK
Imagine 17 or 18 years old as being the new "Middle Age". That would make me practically geriatric. Ridiculous? Scary? Well, it's both in my opinion. Science has come a long way baby, but not far enough for my comfort zone. Currently, the average life expectancy for someone with CF hovers around 37 years of age. That's great news considering where we were 20 years ago but it isn't good enough, dammit and though I've never spoken these words aloud, my greatest "what-if" bandit remains clear: What if Charlie and Lola turn out to be just average, or God help me, below average?
1. WALKING ON THIN ICE
Imagine setting out on a stroll across Lake Michigan in the dead of winter. You start out feeling pretty confident; one foot in front of the other and you're thinking to yourself, "Yeah, no problem. I got it!" It's not until you get past the no turning back point that you start to notice the fine lines in the ice, the ones that look like they're going to split apart at any minute and swallow you whole into the the bone chilling black waters that await below. A quick glance over your shoulder to get your bearings and you realize that your starting point is a mirage at best. At this point you can do nothing...you've already gone too far to turn back yet you just don't know if, pardon the expression, you have the balls to take another step forward. What do you do?
That's how I feel about CF. Sometimes I'm walking along, kids in tow, and I feel like yeah, it's not so bad. We CAN do this, we'll make it through. There are other times however where I'm as uncertain as the idiot out on the middle of the lake. How in the hell did I end up here? And the point is, it doesn't matter, I AM HERE. When you're the kind of person who thrives on control, being dealt a deck that you can't read is a real problem. You do the best that you can possibly do and pray like hell that it's gonna be enough to get you across that lake. There is no turning back - you have no more choices. One step in front of the other until you reach the other side and if you're lucky, really, really lucky, when you do finally make it you'll be able to look back and say that it was all worth it.