Memoir: ‘No better father…’

by Shane Neilson

I’ve heard it from patients and from friends a handful of times: “No better father for him.”

I hear this, and I think of my son on the floor, convulsing: two years old, arms moving in unison as if he were an oarsman, legs kicking in small arcs. Lasting seconds. Lasting minutes. Lasting a half hour. I think of putting the lorazepam tablets on his lip, waiting for them to dissolve, and realizing that, after a terrible duration, they are not working. I think of waiting for the ambulance, and then waiting for the eventual second ambulance that can give the midazolam. I think of the emergency resuscitation bay, where he is bagged and oxygen is given.

I feel like my son, with these seizures, is slowly dying. And when I hear from the oblivious that I am somehow offering my son more than an average father could, that I am perfectly positioned to help him, I feel an angry brand of powerlessness. The drugs simply aren’t working- nothing, it seems, can prevent him from seizing. Not switching medication. Not increasing medication. Not combining medication. So I watch my son seize with the same fear as the average father, asking: Will he get out of this one? If it does stop, will this be the one that damages him? What if the ambulance that can give drugs is busy, attending to some other disaster, and the poor fools sent to my door are just a scoop and go? Will he choke?

Will my son die?

I think the average father thinks this last most of all, with every seizure. If the seizures were brief and infrequent, the average father could be cavalier. If drugs banished the seizures, the average father could be cavalier and think that his son had an illness, but rationalize that the illness was under control, that it wasn’t so bad. But in the face of what I’ve witnessed, this little beautiful creature unpredictably struck down when sitting, when standing, when running, when eating, when swimming, when bathing, when brushing his teeth, clusters and clusters of seizures that come so often that he’s rendered ataxic for days, I think the average father, which is what I am, believes that nothing will help, that the new drugs and the increased doses are just futile prayers to help prevent the inevitable.

The average father listens to the baby monitor, and is used to investigating strange sounds at night and naptime. The average father finds it hard to sleep because of these strange noises, or the lack of noise. The average father carries the rescue drugs in his pocket, even knowing that they don’t work, because they’re all he has. The average father is in love with his wife, his son, and knows that the love just makes the pain more acute, that he is loving despite the futility.

I’ve had to stop working to take care of my son. He seizes too frequently to be taken care of in a daycare. And as I’ve spent this time with him I’ve thought of how my work as a doctor might actually help him. The only thing I can come up with is that I have a nametag at the local hospital, which lets me enter the emergency department without having to wait for someone to open the locked doors. The average father would have to wait outside those doors as his son was being treated inside. I get to walk straight in. And then I return to being average as I watch the nurses and the doctors try to make sure that my son will be alright. And I think I am being average when I say that all of me is desperate in hoping that he will indeed be all right.

The One True Cry

My son, they say in dreams you meet.
I’ve watched you die, and die again, in dreams.
And now dreams are coming true — sweet
Dreams, where love has no worth, and the seams
Are showing in the dreamstuff. I cannot save
How I feel, least of all you, I cannot take the means
And make them justify the pain. When you sleep,
It’s ictal, thick, the blood in your drool.
Can’t walk. Slurred speech. And dreams threaten
Every hour. O one true heart that could cry
And be heard, and make some sullen god heed a wish
Of abatement, of peace: but I feel the doom,
The dream, the paucity of here, the sleep in the room
Where you seize on the floor and my one true heart
Has a small sacred place for hope.
It quakes when you do,
My son. They say in dreams
We are free. I make no plans. I wake when you do.
And the love doesn’t help, does it?
It just sharpens the ear to the one true cry.
Yours–