I cry as my child weeps on my shoulder, but no tears leave my eyes. I love her so much, but my tears won’t take away her pain. She needs me to be strong. My heart aches for her pain, the pain I have unknowingly given her. For thirty-five years, I roamed this world, in and out of the hospital, even as a child. Multiple dislocations and emergency visits for what everyone thought was a heart attack were merely costochondritis and rotoscoliosis. The doctors sent me away and told me to take Tylenol and Advil, and my pain would eventually go away. When I was persistent, they told me my pain was in my head, or maybe my pain was real but only temporary. Doctor after doctor was always the same—I was too young for this pain—too young to take medication to ease my torture. But they never offered a solution. Never once did they say it was in my genes.
‘Mother, why? Why me? What will they do to me?’ she asks, her voice breaking.
‘This time, they will pull some teeth and reshape your jaw,’ I say. I cannot answer the first question; I have the same unanswered questions, and she wouldn’t understand if I said genetics.
‘Will it hurt?’
‘Yes, but they will give you medication to take away the pain,’ I lie, knowing they will see her diagnosis in her chart and not medicate her the same way they didn’t for my son and myself previously.
I am to blame. Me and my broken genes. All three of my children have inherited my genes, which broke theirs until my pain was their pain, and their suffering mirrored my own. I broke them all. I tell myself that I didn’t know. No one told me, but deep down, I knew something was wrong.
‘It’s my fault,’ I whisper as she sobs by my side, ‘I’m sorry, honey, it’ll be okay.’
Her tears don’t stop; neither does her pain. It will be with her forever like the faulty collagen struggling to hold her body together. Her fear and desperation are palpable, and her unspoken questions hurt.
Mother, why did you do this to me? Why do I need surgery? Everything hurts: my feet, my shoulders, my teeth, and now I need surgery.
She does not speak the words, but I know these are her thoughts, or maybe they are mine. As a child with a syndrome without a name or diagnosis, I never blamed my parents, but I watched them torture themselves as I lay quietly in my pain.
I know her brother feels the same after all his surgeries, too. Now that they have been diagnosed, my only true answer is hypermobile Ehlers-Danlos Syndrome, but I know it is because of me.
I lie to her again, ‘It’ll be okay,’ I murmur as I squeeze her gently.
Despite this, I continue to try my best to find resources, temporary relief, braces, and anything that might help. I do not take care of myself until my children are cared for. If they must suffer, I shall suffer with them in silence; we wait, and we hope for a better day, for a better week, for a better life.
I smile at her; it soothes her. Together, we walk to the kitchen to bake her favourite cookies while we wait for my lie to become the truth, knowing it never will.
