Ever wonder what life would look like if the worst thing hadn’t happened?

Ever close your eyes and try to picture yourself going through the motions of life as it was supposed to be?

When Jack first got sick, I would wake up each morning forgetting our new reality briefly. Then it would sink in.

That first year, I could easily picture what life would have looked like had Jack not been diagnosed with a disease that within months had left him both medically fragile and fully dependent. Jack would have finished second grade over at the Marshall School. He would have continued playing little league for another year or so (but was probably getting close to breaking the news to Dan that it wasn’t really his sport). Anna would have had hair down to her waist instead of missing that 10 inches that she’d donated to Locks of Love. I would have been dreading those crazy weekends before the holidays when everyone in town NEEDED their family portraits done. And Dan’s job would have been flourishing, knowing all his ducks were in a row at home. 

We also would have taken that trip to Puerto Rico that we had to replace with an extended stay in the hospital.

A couple of years into our new life, I needed to concentrate a little more to get the visual of what life would have looked like if the worst thing hadn’t happened. Even before his disease made a mess in Jack’s brain, he was never into organized sports — certainly not the way kids play sports these days. By middle school, I pictured him being one of those kids with a skateboard in hand and holes in his jeans that were earned, not purchased. His beautiful smile making even the cranky neighbors forgive him for cutting through their lawn and paying music too loud with his buddies. Without being exposed so early to the power of science, Anna may have chosen to focus on her other love — art. She might have had parents who paid a little more attention to her – to her schedule, her needs. I might have given up family portraits to go back to teaching art full time. As a family we might have even gone abroad for a few years taking advantage of a job opportunity for Dan.

Now this fictional story of how life was supposed to be is impossible to imagine. As much as I tried not to let it happen, Jack’s disease has been the center of our lives for 16 years. It has defined our family. Jack didn’t finish his time at the Marshal School, he never returned to little league or rode a skateboard. He didn’t go to college or trade school. Instead, he went to special schools for the multiply disabled, has become accustomed to needing help with everything from eating to toileting, and had to learn how to make that magical smile of his be his only source of communication. 

But things aren’t so bad.

Jack’s in an adult program now where a typical day involves pushing his friend’s wheelchairs, doing simple arts and crafts, being fed by an aide, and laughing. Anna is on her way to medical school in a few short months (her likely focus is reproductive endocrinology – a specialty we’d never known existed before this new life). Dan has enjoyed a wonderful career in finance, but his priorities include having the flexibility to be able to get Jack up in the morning – hearing them in the bathroom listening to 70s on 7 as Dan bathes his only son is how I wake up each morning. And my life is completely a result of the worst thing that ever-happened to us. I’m a writer, an advocate, a therapist – all things that would have been — not just unlikely, but impossible 16 years ago. Impossible without living through the worst thing in our lives.

If I could — I would change our journey. I would trade all this for what life had promised us before the worst thing happened. There is a reason I still call it the worst thing that ever happened. BUT it did happen and it left, not just scars, but the knowledge that we can heal. That we can survive and even thrive. 

So I try to look at our family now without thinking too much about the before and after the worst thing. I try to focus on who we are and what we are doing now. Maybe this is life as it is supposed to be.

Last month our family finally took that trip to Puerto Rico. It may not have been the trip it would have been without the worst thing, but it was beautiful. 

Love, Jess