Living a Nightmare, Hoping for a Dream

Dear Son was in elementary school when I think it was the hardest. I would look out across the street at my neighbor’s children, the oldest which was about the same age as Dear Son. His white blond hair would catch the light as he played about the yard. He was 100% All American boy. I remember as a toddler, he’d be taking the ball and passing it through the basketball hoop. As he got older, he’d think nothing of jumping in a pile of landscape dirt, in his white t-shirt, jean shorts and gym shoes. I remember laughing to myself thinking that his mother was going to be so peeved when she saw that shirt; I know I would just die if Dear Son did that and messed up his clothes. Not really, of course. It was the kind of thing you would say if that was the worst thing that your child did and you prided yourself in keeping your kids looking nice. I would be thrilled if Dear Son could have played sports and jumped in the dirt pile. My own Dear Son would oblige me a few years later when he’d sit in the “dirt hole” and play. I never complained about his clothes.

My neighbor’s son would go on to play soccer, at a young age. He and some of the other boys in the neighborhood would play and the parents would come to watch the games on Saturday morning. My other next door neighbor was a coach and his son played as well so there was an instant bonding of all the parents of the kids who played soccer. That was only normal. I couldn’t help but be a little envious when I went to the neighborhood’s party, and the conversation would turn to soccer or to the other sports; I would soon be quiet, pretending to hone my listening skills, as the other parents would tell the sports stories. I wished how Dear Son could play. I have no doubt he’d be an All Star sports player, if only….. They didn’t know it but when he was sitting, he had a mean kick that would have scored a goal that the best goalie couldn’t block. He’d sit on the floor, with his left leg bent in, and some unsuspecting person would sit a few feet away and roll the ball his way, to be nice of course. Dear Son would kick that ball so hard that the impact of that ball would not only test their reflexes but take their breath away as it knocked them out when it landed in the pit of their stomach. I’d warn them but they wouldn’t listen until they were gasping for breath. My son had a mean left foot, for soccer that is, but the running part of his game, left a lot to be desired.

In elementary school, they continued to send the flyers home. They’d send flyers home every spring for Little League tryouts and during the year, we’d get soccer tryouts and just about every other sport imaginable. I tried asking them nicely not to send them home and even begged them at the annual IEP (Individual Education Plan) meeting to stop however they explained that it would be discriminatory to exclude the Special Needs children from getting the sports notices. Sometimes, it’s more important to be kind than to be nice.

Over the years, I got used to the fact that things would never be the way I wished or I had hoped for Dear Son. It takes time though. Dear Son was only two or so when one of the pediatrician’s was nice enough to tell me that Dear Son was never going to do more than a one year old, even as an adult. He is fifteen now, takes PediaSure via a g-tube and is still in diapers. He wasn’t that far off.

So the problem started with this blog. I began to see several referrals from an infantile spasm web site and decided to investigate. I joined the site, curious to find out where these referrals were coming from. What I found were many mothers, all parents of infants with infantile spasms, looking for answers to their child’s seizures. There were all different kinds of threads, some looking for answers on the best medications for their child, some looking for advice on what kind of diapers to get, and other mothers sharing their suggestions and tales of woe to help each other. When I say tales of woe, it’s not that they were exaggerating, but I couldn’t help but feel such grief and sadness when reading their stories. They really were tales of woe. I was instantly transported when I read their posts, instantly transported back in time to my days with Dear Son. It was the same feeling you get when you walk into a junior high school in any part of the country. No matter how well your life is going, when you walk into that junior high, you are instantly taken back to your junior high days, whether you want to or not. It doesn’t matter if your days in junior high were good or bad, it’s just the growing pains of being a teenager, days any adult would like to forget. You leave the building and you are back in reality, and glad too.

Then there were the e-mails. I began to get some e-mails from some of the parents asking me for answers. One of the parents said it was killing him and his wife thinking about their child’s future and wanted to know what I could tell them. I suddenly felt very inadequate and very protective at the same time. While I wasn’t an expert, I knew in my heart that nothing much would change. I thought back to what I wanted to hear when I was in their shoes and it was honesty. But my heart kept pulling me back. I remember too clearly the frustration of looking for answers in the early years and wanting the pediatric neurologist to put things in black and white which he would never do, just giving me shades of gray. I suddenly cut him enormous slack.

Then there was another e-mail from a mother begging for answers for her son who was having uncontrollable seizures, none of which could be stopped. She didn’t have access to the kinds of medical care we take for granted in our big cities, but she certainly would get four stars for trying to get answers. She even traveled out of state for answers, but they sent her son home to die, since there was nothing they could do for him. I asked a few questions, like how often they performed the EEGs and she said they were doing it every six months. I nearly choked. I wanted to tell her to pack every bag and get to the nearest big academic medical center and to move if she had to rather than lose that child. But I didn’t.

What was most striking though about all of these posts, was the love these parents had for their children. They were all looking for answers, willing to do whatever it takes to stop the seizures. The hardest part though, was the emotional part, seeing these parents grieve for the life that their children would never have, more often than not, the lives of their sons. They were in fact, living a nightmare and hoping for a dream. I remember those days too, when the only way out was a miracle. ‘Tis the season, for miracles. I’ll pray that they all come true.