My family looks like a regular family. Mom, Dad, four kids, a dog. We joke that even our 17-year-old child with special needs is pretty run-of-the-mill, 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. He walks (although he uses a wheelchair for long treks), talks, goes to school, had a bar mitzvah, plays piano, and is involved with theatre. He has a pleasant disposition with no behavior problems. 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) sits with him, wipes his mouth, changes the towels, and administers 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 otherworldly, 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.
And sometimes it brings out the monster in me. I pull out my hair and wail, begging for him to stop, even though I know it’s not my son’s fault; he does not have control over these episodes. It doesn’t feel like one of my finer parenting moments, made worse by the fact that he always apologizes.
“I’m sorry, Mommy,” he says.
“It’s not your fault. 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, and so on.
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, and 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 young man 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 pick up my other kids from school after a rough patch, they often say, “You are in a good mood. Our brother must have had a good day.”
Fortunately, he is on a new medication which has minimized the severity and frequency of these episodes. Like all families, we cherish the good days and muddle through the bad ones.