As a caregiver to a chronically ill child with a rare autoinflammatory disease, I find I also have chronic behaviors. Daniel often teases me about being an expert in him (which in all seriousness isn’t wrong). But after six years of living on this journey with him, the trauma of almost losing him early on in this journey, and the roller coaster of issues he has faced, I find myself sometimes comically imitating his doctor.
When Daniel had fevers everyday, Will and I used to play a game with the nurses at the emergency room or at the hospital. We would kiss him or feel his forehead and try and guess his temperature. Even now, at night when I kiss him on the forehead as I have a million times, I instinctively do it to give myself peace of mind in checking his temperature, as well as a sign of affection.
I can’t help but analyze how he walks up the stairs, how much he is eating, asking him if his body hurts—and where. I have analyzed his body for every bit of redness, lumps and bumps, and every little ache and pain. And sometimes, when I hug him or help him with his exercises, I am testing his body for a reaction. Because pain is an indicator that something is wrong. Not that I am looking for something to be wrong but that I am reassuring myself that he is alright.
Pain is an indicator that something is wrong.
Right now, when his medication has him well controlled and with no major issues at all, it often makes everyone chuckle, including me. But when I do these things, I can take a deep breath knowing I have not gone to sleep missing something.
There are moments in everyone’s life where it just hurts; where we wonder, how did I miss that?
The kids and I did a science lesson on the positive effects of pain on our bodies, and how it helps us to react in a way that prevents further damage. It also sends receptors to our brain letting us know that we need help so we can respond and fix the issue.
When we face pain in life it is also an indicator of our humanity.
Whatever we might be facing, we have an opportunity to respond. It doesn’t make it less painful—and the recovery process can sometimes be long, difficult, and exhausting—but we can make mental steps towards healing. As humans we all make mistakes that may cause a painful reaction, or we all face things that may cause unexpected pain. But we learn from it and we move forward towards progress. Sometimes that means a complete reset: like when Daniel’s disease caused him so much joint pain that he stopped walking. He had to relearn that skill. Healing can be slow at times, but if we can accept our humanness then we will always look back on the moments and see amazing progress. We may test our joints or look for signs of something in the future, but we learn from what we go through and we can check back knowing when we go to sleep at night, we didn’t miss something—that we are staying true to who we are.
Our passions fuel us, but self-reflection and awareness are critical to our health. So, if you are facing something painful right now, acknowledge the pain and see it as a chance to mentally treat it or seek help.
If you look back on this last year and can see where things were difficult, take it as an opportunity to check for reactions. Embrace the pain you felt and see it as an indicator and celebrate your health.