By Kari McBride
It was the phone call from the school nurse’s office that triggered a chain reaction. On the other end of the phone was my daughter, sobbing that her back was hurting and she wanted to come home. Instant mom guilt set in as I realized I was an hour away from her and there was nothing I could do to make it better. This was the tipping point that made me realize we were no longer dealing with typical post-surgical pain.
It all started after a surgery less than a year before. Throughout recovery, she would wince and walk around crying, “Oh, my poor little back,” as any other 7-year-old who’d just had spinal surgery would do. But then, even after the wound had healed and only a surgical scar remained, the feelings of pain never went away.
First it was back pain.
Then it was leg pain.
Then it was feelings of pins and needles.
As a mom, I knew something wasn’t right. I couldn’t explain it, but I knew this pain was part of something bigger than I understood.
After all, children don’t just live in pain with no physical explanation, do they?
What followed was a series of medical appointments, therapy evaluations, tests, procedures, and late nights spent scouring the internet for answers. I was desperately hoping that each new appointment would provide some sort of golden envelope with the answer hidden inside. Yet each time, I left feeling defeated and defensive. My daughter was living in pain, and I didn’t understand why.
For the next year, or maybe it was two, it felt like life was on hold. Chronic pain has a way of blurring time. I refused to believe there wasn’t a cure for her pain. That there was not some surgery or medication that would make her better.
Looking back, I realize I was searching for certainty. I wanted someone to tell me exactly what was wrong and how to fix it.
On perhaps our 12th pediatrician visit in a single year, the doctor gently explained what it meant for someone to live with chronic pain. I was angry. Hurt. Frustrated. Sad. How dare anyone speak about my child’s pain being incurable?
Several months later, after many more late nights spent searching the internet, we met with a pediatric pain specialist. I cried. A lot. How was this our reality?
But that’s when I finally allowed myself to hear the words.
“There’s nothing physically wrong with her.”
“It’s called chronic pain.”
“We can work on a plan to support her.”
These were words I had heard spoken many times before, but I never actually stopped to listen to them. I had spent years searching for what was wrong with my child. Trying desperately to explain why she was in so much pain.
So, I finally let my internet browser rest. I stopped chasing specialist after specialist. I was ready to accept what had become our new reality.
Acceptance didn’t mean my daughter’s pain wasn’t real.
Acceptance wasn’t giving up on hope, therapies, or treatment.
Acceptance was letting go of the belief that there would be one doctor, one test, or one procedure that would fix everything.
My daughter still lives with chronic pain. We still have hard days. We still question why.
Acceptance hasn’t made her pain disappear. But it has allowed us to move forward. We no longer sit by and wait for the pain to go away so we can start living life. Instead, we live life with pain.
I may never like this reality. And if I am being honest, there are days I still grieve it. But acceptance has allowed me to meet my daughter where she is today, instead of spending all our energy wishing she was somewhere else.
My daughter lives with chronic pain. This is the reality we face today.
—by Kari McBride
