As a caretaker of a special needs child, one of the hallmarks of managing my 3-year-old’s severe epilepsy is routinely saving her life. My wife does the bulk of it; coordinating the endless array of medical, therapy, and educational assessment appointments, wrestling with insurance and doctors who sometimes just don’t get it.
Yesterday I had to do the lifesaving thing thing, administering rescue medication after several attempts failed to stop the seizure. It’s trial and error, and there’s a hierarchy of actions, the most severe being to call 911, which we did a few weeks ago. We recognize she’s having a seizure, get her to a safe place, and so on. Yesterday’s seizure was ugly and powerful, and afterwards, as usual, she went into a deep but troubled sleep. She’s physically and mentally exhausted from the convusling. It was about 6pm, and she typically goes to bed at 7, but we knew this meant a sleepless night.
It largely was, and became the kind of night where my wife and I tried to sleep while we let Paloma watch Barney on my macbook in our bed at 2am, to keep her from slapping us and starting conversations.
I woke up stiff and tired, but I didn’t lose my kid. When I first became a routine lifesaver, I didn’t think I was built for it, but knew I didn’t have a choice. Now it seems like a speedbump, and I’ll eat a sleepless night here and there.
A few years ago I read an interview with the rapper Lil’ Wayne in which he claimed that he was the best father in the world- it rubbed me the wrong way. Here was a man who had been a celebrity from a very young age, addicted to fame, and praise, and money. He had been in trouble with the law time and again for weapons and drug charges, and served a year in prison. He had deluded himself in to living the life most rappers just lie about, like some sort of method rapper.
Surely fatherhood is more than buying your kids junk they don’t need with money you got for warbling about misusing prescription cough syrup and conjugating the most debased , pornographic, misogynistic garbage you can comprehend. What about leading by example? Moral instruction? Discipline? Maybe Birdman Jr.’s values system is so skewed that he really is relatively a great example of a father, but I doubt it. I don’t have all the answers, but I know that my role as a father is a bigger responsibility than many men have been willing or able to shoulder. I know that my duty to raise my children, to teach them about fostering healthy relationships, and what they’re worth, and about courage and hard work is daunting. I know that sometimes I’m too tired from work or too busy to give them the attention they deserve, and it hurts me, but not as much as it hurts them.
So I’m going to keep trying. I’m going to keep praying with them when I tuck them in, pray over them as they sleep when I leave for work in the morning, keep talking to other dads about being a dad, keep telling them how special they are, keep reading books about being a better dad, keep pursuing mastery of my vocation… and while I do it, I’ll make sure to make plenty of time to play ponies, and wrestle, and drink imaginary cups of tea.