I have an extra worry.
When I brought my first son home from the hospital and I cradled that perfect creature in my arms, one of my early callers told me ‘A son’s a son ’til he finds a wife but a daughter’s a daughter for life.’ Reflecting on that for days, I worried about my son’s future, his successes, his partner and his relationship with me. I worried, as all mothers do, about his fevers, his vegetables, his number of words, his ability to escape the baby gate and then his first days at school, his teachers, his friends and his grades. I worried through having his tonsils out, through a broken leg, through cavities and stomach flus and H1N1. I worried about playdates, and nights out, and baby sitters and bike rides and crossing the street. I worried about fitting in, bullies, homework and giving the right answers about the ‘birds and the bees.’
Now he is almost thirteen, and I talk to his friend’s moms and we say things like: ‘they aren’t ready for high school.’ We nod when someone offers ‘but they’ll all be together.’ I worry about the things he will be exposed to, about girls, about having his heart broken, about condoms in case he doesn’t, still about fitting in, about coping, about academics, about his mental health, about drugs and drinking and ‘making good decisions.’
I worry about him being a good man someday. I worry about how he treats people around him. I worry about him having too much compassion. I worry about his new habit of rolling his eyes at me.
Worry was invented by mothers.
As a single mom, I worry about keeping us sheltered, fed and in the right amount of clothing for the season. I worry about my car needing work, and balancing being a parent with working two jobs and trying to keep up professionally with people who don’t have the same amount to juggle.
But this isn’t about those worries.
You see, when my son was eight, I was given an extra worry. My son has epilepsy.
I am lucky, some parents with an extra worry have much more to deal with than I do. He is healthy and strong and does very well in school and has good friends and has, thus far, made good decisions.
But, I have an extra worry.
My extra worry means that sleepovers come with the risk that he will have a seizure, and that the people looking after him won’t know what to do, or that the kids will be freaked out. Then I worry that he will suffer socially if I don’t let him go.
My extra worry means that asking to go swimming at the pool or skiing with his friends is not the same as it is for other moms. It means that his class trip to an isolated location in the Yukon wilderness had me terrified. It means that he will never be able to go swimming at the lake without me, or someone else who is capable of a water-rescue.
My extra worry means that he won’t get the privacy he will want at night. It means his door will always have to be open. It means that I will always have to be able to hear him.
My extra worry means that drinking and drugs, which come with the usual risks, are multiplied by a factor of seizures and medication counter-indications. It means that drinking to the point of passing-out creates a horribly dangerous combination of risks that could result in his not having a chance to choose better next time. It means that each time I hear a story from a male friend about their high-risk behaviours through adolescence my natural maternal fears are amplified by concern that those things will bring on a seizure.
My extra worry means finding a way to complete honesty with my son about what his epilepsy really means in an adult world. That seizure-free years don’t translate to the ability to take baths alone at home, or locking the door when you’re having a shower, or to go camping with your friends without your mother ensuring there will be no drinking and that one of them will stay sober enough to help you if you need them to.
My extra worry keeps me up at night, trying to think of ways to explain that even though I have spent his whole life telling him that nothing should hold him back, he needs to ALWAYS take his medication on time. Even at the party. Even on the date. Even at school.
My extra worry is that my wonderful, amazing, brilliant and heroic son will one day google the side-effects of that medication he takes to be ‘well,’ and will start to manifest them because he sees them there online.
My extra worry is in the statistics and numbers for people with epilepsy. I pour over them and memorize them as if knowing them will give me comfort. They don’t.
My extra worry means that every night when I tuck him in I wonder if he will have a seizure, and that every morning when I go into his room to wake him up I am relieved when I see his body moving under his blankets. It is hard to write that, but that is the truth.
As parents, we all worry.
But I have an extra worry.
Please help people like me – the parents of children with something ‘extra’ to worry about. Help us by teaching your children to accept differences. Help us by encouraging your children to learn first aid, and learn it yourself so that you won’t be fearful of having a child like mine stay at your house. Help us by demonstrating compassion to your children.
Help us by telling your children that there are some people who CAN’T ‘get drunk.’ Not even one time. Teach your kids that there are some people who can’t just ‘try’ the acid, or the pot or the pill. Even though I know you don’t want to think about your kids doing that either.
And if you are reading this, and your child has a friend who can’t do all the things that they can do, teach them that pressuring to them is wrong. Teach them that the most important thing they can do is help a person to make good choices. Teach them to watch out for people like my son, as he would for them.
When you teach your children these things, let them see your compassion for mothers and fathers like me.
Ones who have an extra worry.