This article was published in Complex Child e-magazine‘s annual respiratory issue.
The moment the doctor told me Richie would need a tracheostomy, I felt the floor drop from beneath me. Just one week earlier, we had brought our 11-week-old baby to the emergency room because he was wheezing. Born with fiber-type disproportion myopathy, he had severe muscle weakness and was already tube fed and on oxygen twenty-four hours a day. Over the course of that week, his lungs had collapsed each time the doctors had removed the breathing tube, one after the other. A trach, they said, was our only choice. But this, a trach, was too much.
I had never really seen a trach up close, but the thought of it was intimidating. A foreign device that stuck out of my baby’s neck was just one more thing that would make him visibly different from other kids. Managing his care seemed complicated and frightening.
Feeling overwhelmed by sadness and fear, I left the room and called my sister. Also born with fiber-type disproportion myopathy, she was 26 years old at the time, with a lifetime of experience living with a disability. She had been a local spokesperson for Muscular Dystrophy Association and had been to the summer camp for a decade, so I knew that unlike me, she had at least seen a trach in person.
As I cried about how awful it was that Richie needed a trach, my sister listened patiently. Then she said, “You know a trach is not necessarily permanent, right?” I didn’t. In the blur of emotions, I had not asked that question. I continued to tell her how hard it would be to care for my son with this medical device, and how afraid I was that I would do something wrong or mess up and jeopardize his health and safety. Her response saved my sanity.
She said, “I see kids with trachs at MDA camp all the time. Their moms can change a trach hanging over the front seat of a car like it’s nothing. They’re like supermoms.”
Her response was simple, but it lifted my spirit immediately and gave me a new vision of the type of mom I could be. I didn’t have to be some frazzled, sad trach mom. If these women could overcome the sadness and fear they undoubtedly felt, so could I.
Like them, I could be a supermom. Faster than a speeding ambulance, more powerful than a mucus plug, I could leap a tower of plastic medical devices in a single bound. This new vision saved me from becoming tragic and allowed me to find my own superpowers.
Fiber-type disproportion myopathy stole my sister from me in 2012, but I continue to be inspired by the vision she helped me to create for myself. Having a new way of seeing myself helped me to pick up my shattered emotions, put on my supermom suit, and figure out how to manage Richie’s care effectively.
More than three years later, I have become that supermom. I can change a trach in 10 seconds or less; I can instill saline and suction with one hand behind my back; I can sniff out pseudomonas within 15 feet. I never would have envisioned myself this way on the day we were told Richie would need a trach, but here I am, as super as I can be. Richie’s respiratory status has improved so well that his pulmonologist says we can decannulate him this spring. With no trach to conquer, I will have to find a new set of superpowers.