Wednesday, September 21, 2011

Living, Part 2

I spend a lot of time inside my head trying to figure out how to explain how certain things are related. A seemingly random telephone call, major life changes, my melancholy over Jackson graduating to 'the vest' for airway clearance. They FEEL related. Admittedly, I am one of those 'all is one' types anyway, but sometimes the connections of seemingly unrelated events is stronger than others.

Because I just talked with someone about 'my writing', I feel awkward and on the spot to come up with something extra special, but I'm going to try to keep it to the point instead.

It's bittersweet to see Jackson take another step toward independence. CF puts things in a microcosm, life, death, the poignance of a given moment, it's all just magnified. Each step he takes toward being older is a form of liberation and a form of loss, as is every choice we make, every day. The baby part of his life is ending. He gets older. He needs me less, he makes progress, CF makes progress, hopefully medicine makes progress. All things must change.

It's occurred to me recently that my waves of grief may have somewhat stabilized. Or at least I have begun to grasp that it is a part of me now, as mush as my fingers and toes. I have begun to feel a bit like a functioning human on a regular basis, and slowly wondering, what now?

When we applied for our home loan recently, I was upset when my credit rating came back not bad, but non-existent. Since I carry no credit debt and haven't worked in almost two years, only one credit bureau even knows I'm around. For a moment it was frightening. Like I had really ceased to exist since retreating to the confines of this house to lick my family's wounds. It bothered me more than I could understand. Not that I'm hot for Transunion & Equifax, but I had the strong urge to not be invisible.

I've been laying groundwork toward my own goals, writing a business plan and working towards enrolling J in a part time program where he can socialize with other kids.

Out of the fog, there is assembling the vague idea that I still have an identity of my own. That life is indeed still happening. That I have disappeared for a time to nurture and to mourn, and to fortify my children to the best of my ability, and with all of my love. And I still will, but if I expect them to learn, and grow, and live outside their comfort zones, I damn sure better be willing to lead by example.

You might be annoyed if you got a call at 4:37am. Not me. I got a reminder that even though I have forgotten myself, I haven't been forgotten. I'm still here, somewhere. Another part of my last lesson that sometimes life with CF isn't just 'living with a disease', it's just living, and THAT is what I want to teach as a mother.

Sunday, September 18, 2011

Life With CF Isn't Always Just About CF

2011-09-09 13.34.45 In my last post I alluded to a few of the MANY things keeping us busy these days. Usually, I try to keep my posts here on topic, because this blog is about our life with CF, not what I think about foreign policy or Russian pre-existentialism. So on occasion there is some internal debate about whether certain topics are relevant enough to warrant a post. I tried to write a post earlier today about how CF relates to some of our current madness, and was frustrated with how long it was taking to explain how the two were intertwined. After a dozen paragraphs and a decision NOT to subject my readers to that, it came down to something very simple.

Life with CF isn't always just about CF. Sometimes, it's just life.

After 18 months of stumbling around trying to figure out how to cope with it, this simple realization seemed HUGE. Of course, I still struggle, and probably always will. It's hard to watch your child be dealt this hand. But I'm also kind of proud that we're not just saying we want him to live as normal a life as possible, we're actually doing it. We are addressing my health 'quirks', butting heads with our 'tween', pursuing our prospective career goals, and.....trying to buy a house. Which also means I am madly trying to rid our current home of clutter and junk that I don't want to deal with should we be successful. Somehow there is space for all these things between CF diets and tube feedings and breathing treatments and pills and vitamins and all the things I thought would consume every minute of forever. And yet it is still inextricably intertwined with every aspect of every day in ways that still sometimes surprise me. Don't get me wrong, so far I'm failing miserably at streamlining all the 'stuff', but it's no small miracle that I'm even trying.

Today amidst taking away all of my daughter's toys and discovering that Jackson had once again 'washed' his hair with his formula, the cat pooped beside the litter box, and I didn't accomplish ANY of my cleaning goals for the day, I managed to learn that. Sometimes, it's just life.

Wednesday, September 14, 2011

Another Long Absence

I guess you can count this one under the "no news is good news" category. 2011-09-04 11.48.59

Jackson turned 18 months old this weekend, and is doing beautifully! He had a little virus/ear infection, but recovered well and quickly gained back the weight he lost while sick. We are gearing up for respiratory season, and J has been fitted for his own vest. The vest will take the place of us thumping on his back, chest, and sides, and uses a compressor to do the 'thumping' for us. It makes him seem so grown up...-insert all cliches about how quickly the time goes here.

Just like I say in every post...I hope/intend/plan to/think about posting more often. And as always, I can barely keep up with the day to day, and in all honesty, I can't guarantee an increase in frequency. You, my reader, could technically count that as a win. Less to blog about = more normal life occurrences, and less CF struggle, right?

And to be perfectly honest, I've had a lot going on with me lately. I've had a few small medical quandaries myself- I wouldn't feel OK going on about them here, this blog is about life with CF, not a place for me to enumerate my minor issues. But it has been consuming my time recently and it is something I and other caregivers should heed. It's easy to put your own business on the back burner when you care for someone with a chronic disease. But if you want my advice (you're here, so you're getting it!), don't. When you spend so much of your time and energy taking care of someone else, it's all the more important that you are well yourself.

So that's what I've been doing. Well......there's more, but I'm being insanely superstitious about it, so you're all going to have to wait! Let the wild speculations commence...

I'll post when Jackson gets his vest and maybe even a video to show you all how it works. In the meantime, thanks for sticking around in spite of my lack of reliability. I love ya for it.