A shift from the medical perspective of disability to a mother’s perspective

"In the months just prior to the infantile spasms, as Josephine’s mind had begun to develop and grow, so, finally, had my love for her. My lack of affection for her up until that point had troubled me, and it was with relief that I had realized I was beginning to look at her with adoration—that a random thought of her was accompanied by delight as often as sadness. I knew that my lack of acceptance had been at the root of my difficulty bonding with her, and I had felt that I was beginning to find peace with the person that she was, limitations included.

Looking back, I see that my reaction to her that night in the rocker—my denial of her personhood, my despair at the thought of being obligated to mother her—reveals that what I mistook for love and acceptance was actually something much more tenuous and conditional. I wasn’t truly beginning to love her, I was beginning to love who she might become. It was only her potential I valued, not her current self. The odyssey to fully embracing her, disabilities and all, was one I had yet to make."

K. Jane Lee is a pediatrician and author of Catastrophic Rupture: A Memoir of Healing.

She shares her story and discusses her KevinMD article, "A shift from the medical perspective of disability to a mother’s perspective."