I watched her start to crawl up on me. I saw her carefully placed hands, elbows, and knees avoid all my “problem” areas. The spots she had accidentally dug into a million times that she knows will make yelp. She made it my lap, laid her head on my chest, and looked up into my eyes.
“Are you not feeling very good today mommy?”
“No baby, I’m not feeling very good today,” I replied.
“Do you need to go to the doctor? I could be your doctor and give you shots!”
She tore off my lap forgetting all that care she had taken initially getting up in her excitement to find her doctor kit and give me my shots. I held back the wince that would have interfered with that excitement.
This is a pretty everyday sort of interaction for us, my nearly four-year-old daughter and me, her mother living with chronic pain due to hypermobility type Ehlers-Danlos syndrome. I frequently wonder what these interactions would be like if I were “normal.” Would I even find them noteworthy without the red hot flashes of pain and her behavior that had been dictated by said pain?
Parenting with chronic pain is for me, a delicate balancing act as I try to raise a child who is empathetic to people and their differences while not letting what I’m experiencing negatively impact her childhood. I want to find a way to take her on that hike while teaching her to notice when others around her may be hurting and how to make the activities she pursues inclusive.
Is this even possible?
I’m not entirely sure.
Will she remember these things? Will she realize the depth of which this affected her to the core of her personality in the same way I do? Will she feel sad? Grateful? Am I a shitty/selfish person for exposing her to this and still wanting more kids? Will she hate me if she inherits this?
These are the questions I ask myself daily and I imagine most other parents living with chronic pain do to. I find it much easier to extend empathy to those around me going through similar experiences than myself. I see the beautiful children they are raising and what a great job they are doing and try to extend that same grace to myself. Some days are better than others.
For now, my heart will continue to swell and simultaneously break while I watch her care enough to be delicate with her motions while my pain continues to rob us of some of the normalcy we should both be allowed.
If you know a parent dealing with chronic pain reach out to them and remind them how worthy and great they are. Empathize with them.
If you are that parent remember, you are the best parent for your child. Just because our experiences in raising children are “different” doesn’t make them any better or worse.
You are worthy.
Love, gentle hugs, and an extra spoon or two.