I’ve never had an out-of-body experience. But what is happening now feels like I’m watching a hospital drama on TV, only I’m playing the role of Loving Father. My beautiful, happy, baby boy sitting in his hospital crib is starring as Teddy, the sweet child who has some mysterious condition that is stumping the dedicated team of doctors. I probably feel this way because my brain simply cannot accept the possibility that what these people are saying could be real.
“I’d like to rule brain tumor out, too,” I say jokingly. I can’t help it. Joking is what I do. It helps me deal with any situation. Takes things down from DEFCON 1. Brain tumor?! How the hell did we get here?
A few days earlier my wife took Teddy in for his 12-month checkup. Most people would call that a year but for some reason everything with babies is measured in weeks and months. A checkup. “No big deal,” I thought as I went to work. But the doctor noticed a facial droop on the left side of Teddy’s face. After some simple tests to see if Teddy was using both sides of his body in correct synchronization, she wanted us to go to the hospital and see a neurologist. The facial droop made our doctor afraid of Cerebral Palsy or a stroke from previous minimizations. That’s when I got the call every parent dreads.
That’s what brought us to the hospital. That’s why I’m discussing brain tumors with a team of doctors. That’s why they’re doing CT scans and MRIs to rule out Multiple Sclerosis, Muscular Dystrophy, cancer and Lyme disease. Or even worse, to rule them in.
We have a room on the ninth floor. It’s the neurology unit. I take Teddy to the playroom. Fun for him, a needed change of scenery for me. The second we step in the hall, I see a teenage girl in her hospital issue gown and bathrobe. She is trying to walk, clutching the pole on wheels that holds her IV. She is bald and there are large stitches that follow in a line down the back of her head. Her parents stand behind her trying not to let her see them cry. Where the hell is this playroom?!
We get to the playroom and there is a boy with, what looks to my uneducated mind, to be a large tumor occupying his forehead and protruding over his eye. So much for a change of scenery to ease the mind. He is a sweet boy with a ready smile. His father seems like a good guy too. Looking at Teddy I could tell he was thinking, “What’s he doing here?”
But he doesn’t ask. He’s got enough to worry about.
My wife comes every day. She wants to be here, but we have two other boys and we don’t want to break their routine. So after she gets them off to school, she makes the 45-mile trip into the city to the hospital. We are a team. We share the same attitude. Whatever it is, we’ll deal with it.
We were trying to be brave but minds left to their own devices often go to dark places. We had trouble conceiving another child. Then, just when we thought it wouldn’t happen, Karen was suddenly pregnant. When it came time to name our baby we chose Theodore because it means gift from God.
We were both hoping He was paying attention.
Four days and too many tests later, a young intern stands in front of me. “The good news is that all the tests were negative and we’re releasing him,” he says. “Then what’s wrong with him?” I ask. “Um … we don’t know.” Okay, now I’m getting angry.
“After four days of test after test you’re telling us you don’t know what it is—go home and good luck?!” The young doctor is kind and talks to me for a while but it is what it is and it’s time for us to go. More outpatient tests will follow. I thanked him and gave him a bit of advice. “I know you’re starting out so let me tell you something. When you are the head doctor and there is a situation like this, come and talk to the parents yourself. Don’t send a junior guy to do you dirty work. Not coming when he knew I’d have a million questions was gutless.”
We packed and left.
From neurology we went to Ear, Nose, and Throat. Teddy was mostly on bottle feedings. That too, it turns out, was because of his facial droop. He lacked the muscle power to chew and swallow. That’s when in-home therapy began. The primary focus of his therapy was to work on feeding, swallowing, and fine motor skills—(dexterity).
As they worked together, his therapist noticed what were red flags to her trained eye. Teddy was not making any of his milestones and she began to suspect that something else was wrong—something we had never thought of and no doctor had mentioned. It was at our therapist’s suggestion that we contacted his neurologist again for further testing.
Teddy’s neurologist is sitting with us now. She is a renowned neurologist at a major children’s hospital. She is poised, polished, and the kind of person you respect and trust instantly. My wife and I are understandably nervous. Teddy sits in the stroller next to us, oblivious to the weight of the moment. Nice to be oblivious.
My wife and I are holding hands. “We’ve tested Teddy extensively as you know,” she begins. “He really is a sweet and happy baby.” Okay, start with a compliment then deliver the hammer, I’m thinking to myself. I know this drill from work. I mentally steeled myself for the worst. My mind goes to the dark places I work so hard to fight against: tumor, cancer, Cerebral Palsy, six months to live, eight months, eight years … Stop thinking like that. Stop thinking like that!
Let the doctor talk.
“I believe, from everything we’ve seen, that Teddy is on the autism spectrum,” the doctor tells us in a most soothing tone.
“He’s autistic? Thank God,” I say out loud to myself. I am so relieved. Autism. You don’t die from that right? No, I know you don’t. Autism. I am breathing. I look at Teddy like he just got into MIT. I’m so … proud? … Happy? No. Relieved. So is my wife. We are still holding hands and we give each other a squeeze. Ahhh, autism.
Teddy’s doctor is surprised. This is not the reaction she usually gets when parents are told their child has autism. This is devastating news. We explain to the doctor that ever since Teddy was rushed to the hospital and stayed for four days of tests, ever since all those test left us with nothing but the worst thoughts parents can have, we have feared the absolute worst. In the most odd way possible, we are almost thrilled. “Now, what is autism and what do we do?”
Like I said, nice to be oblivious.
We jumped into therapy immediately. If Teddy has autism we wanted to face it head on. Thirty-six hours of therapy a week and he’s only 17 months old. He sat in a stiff wooden chair I referred to as his Spanish Inquisition chair. “It’s to help him focus” I was told by one of the series of hard-working, dedicated therapists that came, and sadly went, from our lives. “I was just joking,” I said. “It’s what I do. Sorry.” I had no idea how valuable a sense of humor would be or how patient we all would have to become.
He’s doing great. He is in second grade in a non-integrated classroom. Before Teddy we would have called it a “normal” classroom. We don’t define things that way anymore. And though he is doing great it hasn’t been seven years of bliss. It’s been, and remains, hard work. It tests our patience. There are tantrums. There is still a voice that, as Nigel Tufnel would say, goes to 11. There are still issues with transition. There is still autism.