My family looks like a regular family. Mom, Dad, four kids, a dog. We joke that even our special needs child is pretty run-of-the-mill in terms of a disabled kid, even though he has a genetic disease called Familial Dysautonomia (FD). Sure, he has a feeding tube but that has just become the norm for him and for us as well. Our life hums along like everyone else’s.
But periodically the awful disease that is usually manageable rears its ugly head and inhabits my son’s body. When it does, it feels like there is a monster in the house. The poor child “feels awful” and has uncontrollable retching and oral secretions. When this happens, he sequesters himself in a small TV room in our house where we have a supply of towels just for this purpose. He lies on the ground and writhes around, retching and emitting secretions. Either my husband or myself (usually me, since I’m the stay at home mom) sit with him, wipe his mouth, change the towels, and administer medicine repeatedly (through his g-tube and rectally) until it is finally absorbed by his wracked body and puts him into a deep sleep. The retching noises are other worldly, and not in a good way. At the suggestion of a therapist years ago, I don headphones and listen to music to help drown out the awful noise while doing my best to remain loving and focused on relieving his misery. This process can take two to three hours, which feels like an eternity.
If my other children are home, they scatter to distant parts of the house so they don’t have to hear their brother. They fend for themselves and hope it doesn’t last too long. They suffer along with him and me.
When at last he falls asleep, I sit and wait for 10-15 minutes to make sure it is really over. Sometimes, the episode is like the burning embers of a fire and will reignite. It is a tenuous, stressful, awful time. I minimize all noise in the house to help him drop into a deep sleep. If it starts again, I am like a wild animal, feeling trapped and helpless. Sometimes it brings out the monster in me. I know it’s not my son’s fault, though he always apologizes.
“I’m sorry Mommy,” he says.
“It’s not your fault, Ben. It’s FD’s fault,” I reply, trying to keep the desperation and agitation out of my voice. I am not always successful.
We hate FD.
I am amused when people say what an amazing mother I am. I am not amazing. This is what people say when they are really thinking, “I could never deal with that. Thank God that’s not me.” I am an ordinary mother dealing with an extraordinary disease. I am not unique. Many people suffer in their houses too, with their own monsters—disabled children, mental illness, sickness.
Oddly, I don’t usually feel anger that this is my life. I do not believe that God gave me this child because I can “handle it;” in fact, it’s annoying when people suggest this to me. This child is just one of my kids. He reminds me not to sweat the small stuff. To enjoy each day. To tend to my relationships.
Our family is bound together by many things, and this disease is part of the package. We all are happy and relieved when it goes away and our sunny, happy boy returns. The aftermath of these “crises” is like having post-traumatic stress disorder. We are on pins and needles for a few days. After an awful episode, if we hear him playing Wii in the basement, every noise sounds like a retch. When I picked up my other kids from school the other day, one of my son’s said, “You are in a good mood. Ben must have had a good day.”
We cherish the good days and muddle through the bad ones.