“What is your son’s medical history?” they ask.

“How much time do you have?” I want to know.

I begin, “Maxwell has an unspecified genetic condition, he is mostly deaf with left side deficit, bi-lateral iris colobomas however there is no coloboma on the retina (they always ask), he also has hyperpigmentation of his retina which causes light sensitivity. He has spina bifida, specifically, tethered cord syndrome… [this is where I pause because it’s about to get straight up Dr. Mom]”

I continue, “…his spinal cord is tethered in the lower lumbar/sacral spine to a lipomyelomeningocele; he is post stent surgery for syringomyelia… (a spinal syrinx)” pause, pause, pause. By now the medical provider is trying to contain their overwhelm.

“He has dysphagia with reactive airway disease, prone to aspiration pneumonia. He has bronchomalacia on the left lobe. Maxwell has pelvic floor dysfunction and a host of bowel difficulties. He has a neurogenic bladder and is incontinent”.

Still going….

“Maxwell has a genetic skin condition called “epidermal nevus” in addition to significant eczema. This skin condition provides a piece to the genetics puzzle; as a growing embryo, his skin grew in an abnormal way. Because of his complicated kidneys, he need to avoid ibuprofen and all NSAID drugs. He is allergic to latex. And finally, he has some neurospicy-ness on the autism spectrum, also on the ADHD radar with sensory processing disorder”.

By the time we reach this point, I take a few breaths as a way to honor my resolve; my ability to nail this question, even if it chips away at my heart every single time.

On paper, our kid is a train wreck.

In real life, he is playful, unique, witty, funny, resilient, creative, loud as hell and incredibly high pitched. He is loveable and kind, scoring and blocking goals on his hockey team.

Maxwell’s health with always require attention, consideration and balance. We have learned to live in the middle, inspired by Max and his story. We hope to see you there too.