I had originally planned on writing a piece about coping with long hospitalizations, but when I sat down to write it something struck me. There is no right or wrong way to cope. And more so, we the caregivers of our medically complex house of cards do not need suggestions or tips or advice on how to get by. Whether we are confined to the four walls of a hospital or trying to make do at home, I like to think we do even more than “cope.” We adjust our sails, amend our plan, change our thoughts, reduce our needs, set new goals, see joy in the little things missed by so many and meet most of our daily challenges with a smile and a can-do attitude.
We bounce; we are resilient. We cope in some strange and amazing ways. I’ve been known to dance it out in the PICU. Occasionally I make an inappropriate joke in rounds—I even made a t-shirt once! We eat chocolate or search Pinterest for things that we will never be able to make, do, afford, or concoct, all in an effort to let the challenge we are facing at that particular moment roll off our backs.
There is certainly no absolute solution, no planogram, or step-by-step guide to making it through. There are moments of desperation, despair, and setbacks that have us all ready to tear our hair out, beat a resident, or cry. In those moments though, the amazing resilience that is issued to you along with your kiddo with complex needs shines through. We overcome mainly because they overcome. We watch these tiny lives battle infections, operations, infusions, transfusion, treatments, and pain—and they still smile. What a miracle. What a joy.
We the caregivers of kids who are medically complex, we shine because they shine through us. We move forward because they move forward to face the next challenge. So I say to you if you are reading my words in the middle of a marathon admission riddled with setbacks, DIG DEEP. You might want to punch me for those words, but that’s OK, I’ll take a punch from you, my friend. Because I have been where you are right now and I know what you are capable of. It’s in our weakest moments that we crumble and rebuild. Whatever you are made of right now—tape, glue, brick, twigs, cardboard—you are coping just fine.
The hospital will always hold our darkest of times and our greatest of triumphs. It’s a place that we will never fully escape from because the reality is at any moment we could be there for any variety of reasons. The first step to any coping strategy is to accept this, embrace the hospital as a second home, and invest in a pair of slipper socks.