What a bind I feel in these days; yet also prepared, illuminated, and forewarned. The problem, in fact, may be that I know too much, which don’t get me wrong, in this case that’s a good thing.
For instance, I know how much time caring for a child with diabetes requires of a parent. The planning, the prepping, the management. We are fortunate in this last year I was able to dedicate a good part of the day learning all I could about diabetes and using that information to help us better conduct Lia’s care. The challenge of doing this alone must simply be immense. I can only imagine how much further along we are because there were two of us and at the time of her diagnosis one of us was working from home where the opportunity to self-educate is much greater.
But beyond the huge benefit to my being at home, I was not just sitting there waiting for something to fall from the sky that would occupy my time, worry and attention like nothing I have ever known. I was there to write books.
Writing has been a passion of mine for nearly as long as I can remember. When I first started out I would devour books on writing and later read with painstaking detail the biographies of my favorite authors hoping to find the secrets to their storytelling. Of course, there were none. Hard work and dedication, those are the secrets. But I learned that sometimes to get some place you really want to be, it helps to picture yourself there first. Such was my thinking when one day about six years ago, I came home from a day at the office and Franca asked if I knew anything of the Colombian writer, Gabriel Garcia Marquez. I didn’t and so she told me of how he had quit his job while on vacation, then he and his wife sold off many of their belongings in order to eke out a living while he focused solely on writing. What I had when she finished wasn’t a sudden epiphany but one that arrived over the next couple of days: For the years and years of my own hard work and dedication to pay off I would need to take some risk. So we adjusted our plans and set new priorities and eighteen months later I turned in my rung on the corporate ladder for a comfy writer’s chair and began the long, arduous, but enjoyable journey of channeling my passion for writing into paying work.
I could not have asked for anything better. Franca was teaching, the kids were in school, we had set aside savings to offset my loss of income. Finally, for the first time in my life I could just be a writer; and I did, scratching out two promising, albeit yet-unpublished novels, and in the process digging deeper into the crux of who I am that makes me a writer. It was the life I’d always wanted.
What happened next is no surprise. It is what this blog is all about, lives harnessed in mid-step, plans altered. When I think to four years ago and of my departure from the financial security of my job, I am reminded of the many people close to me who applauded my action, assigning it credits like courage and commitment and while I’ve never thought of it as that, more just a stubborn tenacity and a wife who generously allowed me to entertain it, now after what we’ve been through this past year with my daughter, I can tell them what true courage looks like.
And I can tell them, too, how difficult it is to live without making a shed load of money and treating this outrageous disease. It’s beyond hard, maybe impossible. I don’t know yet. Maybe there’s a way to do both and I just haven’t learned enough yet; and wouldn’t that be a wonderful lesson. But the burden of cost is one of my greatest fears, now and especially as Lia grows older. So much so that I’m torn between suspending this dream and focusing now on a new dream: doing all that I can to ensure that one day ten, twenty, thirty years from now when Lia is sitting in some office somewhere dreaming of some other life for herself and worried about the risk, she won’t be bound in her decision by the cost of treating diabetes.