It was great to meet you last week. You were wonderful with my son, Jack. You were patient, and kind, and you listened carefully as he tried to describe his headaches. I know it can be a little tedious because he mixes up his words and takes a long time to explain things.
You seemed to have some experience with autism, which is nice. I mean, you didn’t even flinch when you mentioned his symptoms could be related to puberty and then he sat straight up on the exam table and shouted, “PUBERTY. That is when I will like VAGINAS.”
That’s nerves of steel, right there.
I’m sure you noticed that I left some parts blank on your intake form. I’m sorry about that.
The thing is, by now I’m pretty sure I have filled out at least nine-hundred, fourteen thousand forms for this child, because ever since he was born on Mother’s Day in 2004, I have had to take him to a lot of doctors; a doctor for his ears, his adenoids, and for something called reflux.
A developmental pediatrician, an allergist, and once, a homeopath.
A regular pediatrician, a psychologist, and a man who specializes in very, very anxious children.
A neuropsychologist, an ophthalmologist, and now you, a pediatric neurologist. For headaches.
Each doctor’s office has their own set of forms. Sometimes there are pages and pages of them.
About an hour before I needed to pick Jack up for our appointment, I sat at my kitchen counter and filled out the paperwork your office sent. It was the usual stuff, like his height and weight and whether or not he has any allergies.
(He doesn’t, although he will try to tell you he’s allergic to citrus fruit.)
The second part asked questions about our history—if we have diabetes or heart murmurs or arthritis running throughout the branches of our family tree.
Then there’s the questions about his development; when he crawled, and walked, and talked, and first ate solid food.
I don’t know when he first crawled. I don’t know when my son crawled because by the time he was four months old I knew something was wrong and whenever I looked at him I felt a frantic flutter in my chest, like there was a bird trapped inside of my ribcage.
See, I didn’t pay a lot of attention to the crawling because I was trying so hard to just get him to look at me, and to gurgle or coo, and to stop crying and whining and fussing for one single goddamn second.
This is why I don’t like the forms. With every single stroke of my pen on the crisp white paper, I have to drag my Jack-a-boo’s first twelve years back out into the light. I have to look at them all over again, and they aren’t pretty, I can tell you that.
Oh sure, there were some bright spots amidst the scary black darkness, like the time we were at the playground and a boy and his dad were flying a red kite and 3-year old Jack looked up in the sky, and said, as clear as a bell, “Red.”
There is no space on your form where I can tell you about the kite.
All the way at the bottom of the first page, there was a question I’ve never seen before.
It said, “Does he mind?”
Does he mind? Well, I thought that was a pretty weird thing to ask. To tell you the truth, I wasn’t sure how to answer.
I mean, sure, he minds. He minds if the line for a rollercoaster is long or if the bottle of syrup is empty or if I bought the wrong brand of pancake mix by mistake at the store. He only likes the kind in the blue box.
He minds when he has headaches.
There wasn’t enough space on the form for all of that so I left it blank. But just as I turned the page and started on the other side, I realized what the question meant.
It meant does he mind, as in does he do what I ask him to and obey the rules and follow directions.
No, not really. I mean, I guess sometimes. If he isn’t distracted by the sound of a car driving past the house or a wiggly tooth or a soft, wily secret autism is whispering in his ear.
There wasn’t enough room to write all of that either, so I left it blank again.
Just once, I’d like to design a medical form.
On my forms, I would have a section for the height and the weight and the allergies and all that, because I know this stuff is important. After that I would have blank pages.
At the top of the first page I would write about we always go for lunch after a doctor’s appointment, no matter how late in the day it is. Even if it’s 3:00 in the afternoon—long past when everyone else has already eaten their sandwiches—Jack insists we stop at a restaurant. I don’t know how he does it, but he holds his hunger inside of him.
Maybe I would include a paragraph about the day in November when I had to go down into the basement to get everyone’s winter jackets out of the storage bin because it was going to snow. And when I pulled Jack’s blue and grey coat out of the pile, I felt a wave of sadness. See, it reminded me of last winter, when he stood, balanced at the edge of an emotional abyss so wide and deep that he wanted to hurt himself because of the rage and the loneliness and the anxiety.
He minds, I mind. We mind.
I would describe the way my stomach clenches in a knot whenever I read about attacks on people with special-needs, like the time four teenagers in Chicago viciously tortured a young man and cut off his hair and wouldn’t let him go home. They even took video and on the video, the boy looked confused and helpless and terrified.
He is vulnerable. My son is vulnerable and we may not always be around to keep him safe and this keeps me awake a lot at night.
I would leave a big blank page for pictures, and I would fill it up with snapshots of Jack laughing and running and eating birthday cake. He likes chocolate.
I would add that he wants to drive a car, and have a family, and live in Wyoming.
I would leave a special space for the siblings; the three boys and one girl who make him who he is.
And at the very end of the form, I would take my favorite blue pen and write this one last sentence.
We love him.
I don’t remember exactly when Jack crawled, it’s true. But I remember the day he walked. It was June. It was late afternoon, and the sun was big and warm and yellow like a lemon in the sky.
He turned from where he was standing and holding on to the couch and took one, two, three steps on his chubby little legs. The smile on his face was wide, and surprised.
For a moment, the bird within me stilled.