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.