My 15 year old son has a genetic disorder called Familial Dysautonomia. Search it and you can learn all about this awful disease. Ben is our 2nd child, 16 months younger than his older brother. Since our first child was typical, it was obvious to us right away that something was wrong with our second child.
He was unable to breast feed, took forever to drink a bottle, seemed to have a lot of reflux and projectile vomiting. At six months I took him to the emergency room because I thought he sounded horribly “junky” in his breathing. It was during that hospital admission when it was discovered that he was aspirating when he drank a bottle. They gave him a nasal-gastric tube, followed a few months later by a gastrostomy tube (since the aspiration had not resolved.) After visits to many specialists, the mystery of what ailed him was discovered when Ben was one year old. As awful as it is to get a diagnosis, it is comforting to know what is wrong and have a medical team to guide you along the way. And fortunately, one of the characteristics of people with FD is a sunny disposition when they are feeling well. Ben is blessed with this disposition, which is an asset to our family – we get to skip the sullen teenage years with him.
I give you this background to set the stage for raising this child. We did everything we were supposed to do: early intervention, first in our house, then in special preschool. Speech therapy, physical therapy, occupational therapy. Individual Education Plans (IEPs), special ed, regular ed. Ben always seemed to be just a little behind and we worked hard to keep him as “normal” as possible. As his peers and siblings aged, the gap became more pronounced. His limitations became more obvious. We came to accept that Ben is probably not college bound; that hopefully he will get a high school diploma. If not, we will still help him get a job where he can be productive and happy.
As he’s aged, Ben’s balance and gait have gotten worse. His stamina is not great and it is difficult for him to walk long distances. Last summer, we had him use a wheelchair for the first time. We were in Boston on a family vacation and Ben had had one of his “crises” (a constellation of symptoms, including a very high heart rate, nausea and uncontrollable retching) that required heavy medication to put him to sleep so his body could “reset.” He was so lethargic, he required a wheelchair at the Aquarium so we and our other 3 children were not stuck in the hotel room for the day. Ben was thrilled and the other kids thought it was novel. My husband and I exchanged a meaningful glance. This was a huge milestone for us as parents of this disabled child. It was a very public admission that he is fragile and weak and will continue to be so. Our family has to adapt to an ever changing reality. It made us very sad, but it salvaged the day.
We decided to buy Ben his own wheelchair this past summer. Annual visits to New York City to see Ben’s specialists, which we combine with a family trip to see the sights, led us to get the chair to avoid dragging him on an unrelenting march across Manhattan in 90 degree heat.
Recently we were in a Smithsonian Museum to see an I-Max movie. We forgot our wheelchair but came across the ones for lending in the museum. It occurred to me as we pushed Ben around that this was a good thing for him. He seemed so much more engaged in the environment as he comfortably sat in the wheelchair, instead of dragging around, squatting every few steps to rest. And because it was more pleasant for him, it was more pleasant for us. We could enjoy his company instead of being dragged down by it.
A person can learn to accept a lot, as time goes on. The stares of others, wondering what’s wrong with your child. The curious questions about your son’s feeding tube. Ben’s siblings take it all in stride. I suppose they follow our lead, as we have always tried to be as normal a family as possible. We had two more children after Ben, so that he would be part of a “pack.” His siblings and our family’s circle of friends are his friends and his support system.
It’s not the family we envisioned, but it is ours and we love it….most of the time.