I was recently told my 19-year-old son would need a cough assist machine. At first I didn’t think much about it, but then it hit me and I felt the meaning in every cell of my being. As I reflected back to his day of diagnosis, the air rushed from my lungs and I felt my heart being ripped from my chest all over again. Those words, “He’ll lose even the most basic motor function,” rang in my ears.
I can recall every detail of first learning about Max’s diagnosis so clearly that even 18 and a half years later I have a visceral reaction to anything resembling news of regression in my child.
“The most basic motor function” in later stages of neurodegenerative disease has absolutely nothing to do with walking, talking, or even eating. What it actually refers to is the most primitive of all motor function: breathing, swallowing, and the gag reflex that protects our airways. These primal functions were set long ago deep within the brain stem. They are the most basic and primitive respiratory functions that keep us alive.
When the doctor tried to explain that Max would lose even the most basic motor function due to Canavan disease, this is what he was referring to. It hit me all at once, and now those words suddenly have new real meaning to me.
I did a mental replay and realized Max hasn’t been coughing lately, and he doesn’t seem to have a gag reflex anymore. I don’t know how or when it happened, probably so gradually that I didn’t even notice. Just like every other lost skill, one day we look back and realize it’s gone. When your child is profoundly disabled, every little thing he can do is critically important. And sometimes the loss is so gradual it isn’t even obvious for months. In this case, I learned it isn’t an issue with brain function but rather pinched nerves in his neck, but the effect on his health remains the same.
So how do I find a place to exist and live with such a cruel disease that is slowly affecting my child’s most primitive motor function like breathing?
I exist somewhere between being the mother of all dragon moms—the textbook cliché of a hypervigilant, advocate, special needs mom who has learned to navigate confidently through the daunting system of IEPs and experimental medicine—to an exhausted, derailed, and discouraged woman reaching out to other parents desperately asking what a cough assist machine is. It’s a dual existence of having a false sense of control and living in a healthy state of denial to completely falling apart, crying over my child, and wondering how I will ever survive one day on this earth without him.
This too shall pass. I’ll get a new piece of equipment and learn to use it to improve my child’s health and extend his life. That’s how I will continue to exist. It doesn’t really matter what is going on deep inside his brain stem. He is happy, loving, and loved. He gets tired more easily but he is still here. He’s still the same smiling beautiful boy so full of love that he was yesterday before I knew he needed a new machine to cough.
I will cry when I have to, but I will continue to move forward. I will file this news away and go on with life. I will probably hug my Maxie a little longer and tighter, pick him up early from his work program today to spend extra time with him, and probably add a third kiss goodnight.