I would have preferred skipping over it. I nearly did. I couldn’t bring myself to write about this condition that has taken over our home and family. This year Fibromyalgia Awareness day coincided with Mother’s Day. I didn’t have the emotional stamina to focus on both. We don’t need a day to be aware of something that has demanded out attention and energy for so long.
No one teaches a parent how to parent a child with a chronic illness. The day after my daughter was diagnosed with fibromyalgia, I called her pediatrician, desperate for guidance. Over the phone, I could almost visualize her throwing her hands up as she said, “I don’t know what to tell you. I have never had a patient with fibromyalgia before.”
As you seek your own answers, the suggestions come with a vengeance. Try this, do this, eat this, don’t eat this…well meaning people don’t know how much self control it takes for me not to scream in frustration or turn around and walk away. We have tried it all, believe me.
For now, we are on a path to healing that we are at peace with. A mixture of medicine and protocol, its a waiting game. Her condition developed over 14 years, so it will take sometime before the symptoms diminish. In the meantime, she learns how to cope in her world and we learn how to help her. But when she steps out into her own life, there will be no one to rearrange the world for her. We are trying to instill in her that her accommodations for herself will be what helps her function for the rest of her life. She cannot expect everyone to make accommodations for her.
There is a fine line when parenting a young teenager who lives with a chronic pain condition. Every day I have to find where that line is because it changes. One day I can push and encourage, the next day I have to pull back for her to figure things out on her own. One day I have to be the one she can lean on and trust, the next day she has to discover within herself what it feels like to fall and rise again.
It all wrecks me.
I can’t fix it, change it, or even make it better. We have to take it day by day.
During my time in prayer a few months ago, God whispered into my soul, “Her way will be different.”
That is what drives me. Her schooling will not look like her peers and I have to be okay with that. She won’t be getting her driver’s license like her friends, and we have to accept that.
Her life will be different, but that does not mean it will not be without the mighty hand of God on it.
A few years ago, I was outside on my knees in prayer. Darkness was around me and my heart was broken over a family matter. My girl came out to find me. She knelt beside me and put an arm around my shoulders. In an instant, a light breeze draped around us. “Mom, that was God.” I knew it in my heart she was right, but to hear her speak it was a gift. To be able to recognize God’s presence in the darkest times is something many of us miss.
When this road gets tough, I remind her of that moment we shared together. I never want her to doubt what she felt as the breeze washed over her. In these difficult days, we have to hold tight to the truth that His presence is all around us, never willing to let us go.
We are very aware of Fibromyalgia, but even more so, we are aware of a God who is greater than all of it. He is holding us, moving us through each day as we learn to cope, and washing us in His love before the struggle takes over.
Leah Lively 