When my son was diagnosed with several different (eventually related) chronic illnesses, I tried to take this attitude of open learning with me to the many different doctors' offices, with me to therapists, with me on the bi-monthly flights from Bozeman, Montana (our home at the time) to Seattle Children’s Hospital and finally, with me to the operating room for my son’s two brain surgeries.
Today, we’re three years past surgery and the things I know about myself as a mother, myself as a wife and family member, myself as a daughter, and myself as a person, I couldn’t have learned any other way. I am a different, and I think better person because of the experience. Though I never would have chosen the experience of chronic illness for my son, myself or my family, I now own a richness that I sometimes see lacking in the world that hasn’t faced the worst and seen the other side.
Still, the experience of parenting a chronically ill child makes me sometimes feel apart from the person I was before and from the oblivious world I see streaming past the car-windows of my life. I find myself struggling with overwhelming feelings of separation and aloneness. I think the feeling was born first in the PICU at night, half-asleep amid tubes and wires in the bed where my son and I lay. But the feeling still catches me by surprise sometimes, like when my son’s friend recently jumped into the deep end at a hotel pool, while my son hovered in the shallow end holding my hand. Before the surgery, the cold water bothered him, so he didn’t do much swimming. In that pool loaded with happily screaming children and wet parents, I felt like my son and I were so alone. This emotion quickly gave way to anger -- it wasn’t fair that we’ve had to fight for every one of my son’s milestones, while so many other children with oblivious parents simply grew and learned and slid down the hotel pool slide into the deep end.
And in these moments, I know that I’m not quite back from one of my dad’s learning explorations. These moments in which I find myself alone in a crowded room show me that the journey through chronic illness isn’t a cycle, of “getting over” something, of coming back to who I was back then. I’ll never be that person again, and I’ll never be the other parents in the pool. The journey of chronic illness is linear, pointing from the person you were into the unknown of the person you cant’ help but become.