Years ago, when I was first trying to make sense of the life I'd been thrown into, I found myself scouring the library for the book that would tell me how I could make it all work. What I found was Barbara Gill's Changed by a Child, and the story of the box. In this small book written by and for parents of children with special needs, one mom wrote: "We live our life in a box. When our child is well, when her health is stable, we can move freely in and out of the box. We can visit family and friends, enjoy the park, and live our lives as normally as possible. When our child is sick, though, the lid to the box slams shut. We can see out through the small holes in the box, and know that there is a world beyond the box. But we cannot live in that world."
In the years since I've read that book - one I come back to often, when I need to remember I'm not alone - I've discovered the truth of that life in a box, and the struggle that comes from trying to live both in and out of it. When J. is well, especially when she has long periods of what I call "baseline health", life feels surprisingly normal. She and her siblings go to school, we plan vacations to Maine, and I settle into a busy-but-typical routine of work and home. I'm lulled into thinking that I can do it all -- work full-time at an intense-but-important job and keep up on all the myriad tasks of managing her care. And then, when I least expect it, the lid of that box slams shut.
When the lid is closed, the idea that I can do it all -or do any of it with any kind of success - seems like a ridiculous joke. Whether J. is in the hospital, as she is so often these days, or just too fragile to attend school, someone needs to be with her at all times. We have no nursing care (by state standards, she's not "sick enough"), so the responsibility of that falls to us. And as her mother, my instincts, my driving need, is to be with her. So the precarious balance of work-family-chronic illness collapses, and I'm left with trying to explain to my boss and my clients why I'm not available, again. Why I can't just "find a sitter", or just send her to school so I can work. More importantly, more intensely, though...I'm left trying to figure out if the balance was ever achievable in the first place. I'm left with the reality that, no matter how much I love my job, or how important it is, it's always going to be outside of the box, and when the lid slams shut...the things inside the box, my family, are what matter most.
