Two years

Two years ago today we got an urgent call from our pediatrician telling us to pack a bag and head to the Children’s Hospital of Philadelphia as soon as we could. In a handful more hours we had a preliminary diagnosis and in not much longer he was facing his first surgery to install his port, his first LP, and his first chemo.

I used to write a lot about that day and the days since, but it’s become increasingly difficult to access those feelings. I’d like to write more, but can’t access the feelings right now, it’s enough to just live. Looking through photos this morning brought me instantly to tears, and then sobs, for all that he – and we – have been through and lost, but also for what we still have.

It’s been an unbelievably hard two years, but struggles often reciprocate with their own gifts. We’ve witnessed, and experienced, so much pain and suffering by innocent children, but also gotten to know so many beautifully alive kids and their families. We’ve watched the wrecking ball of cancer wind its way through families, yet we are closer than ever. A tiny, random genetic mutation in just the right place – bad luck – gave Wes a really tough few years, but it also gave us Ruth to help guide us through it.

These days life is a little more regular-feeling, perhaps only because the world has met us halfway by falling apart itself. I work at home and have a job that enables me all the flexibility I need to be with Wes, and Stephanie and Ruth for every important moment. The reality of cancer is never far – the daily drugs, the constant monitoring of every possible sign of relapse, monthly procedures – still, we talk, and cry, and openly worry about it less.

The truth is I’m every bit as afraid now as I was at the start; maybe more. Wes has been given an enormous extension of life and health and for that I’m indescribably grateful, but I’m also ever more afraid of losing him. I love him more every day, and am a better person for every moment I get to spend in his care.

Two years in I’m happy to be here, together, stronger and happier than ever.