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Every Friday in March, all the special needs kids in our local school district go bowling. It’s a special event for the kids, and they all really look forward to it. But my son has never been able to participate until today.
Cooper is 16, and his life has been difficult.
When he was 5 months old, he started having seizures. We tried a combination of approximately 27 different medications. We didn’t know at first that he had Dravet Syndrome, so we tried Lamictal (which is contraindicated for Dravet), and that was a year of increased seizures – it was awful. And then there were side effects…He had a kidney stone the size of a dime when he was 3, and proceeded to have them many more times after that, and had to have them removed with laser surgery. At 7, he had pancreatitis for the second time and it was so bad that he had to be hospitalized for 5 days on an IV, he couldn’t eat or drink.
But those were the good years.
Then, puberty hit and it was awful. It’s very common for kids with any kind of epilepsy to get worse during puberty. You’ve got a flood of hormones to deal with, and the body is growing and changing so quickly – the brain is sensitive to these changes, and the seizure threshold becomes lower.
For the past 3 years, when March has rolled around, Cooper has begged us to let him bowl with his friends. So for the past 3 years we’d go one time and he would have a seizure and we’d have to leave. Each time this happened, year after year, I just couldn’t bring myself to let him go again for the rest of the month. So every Friday he would think about what he was missing out on. And it wasn’t just bowling; Cooper was missing out on a whole lot of other things too.
We were prisoners in our house. We lived from seizure to seizure. It changed the landscape of our family because we couldn’t do anything.
For Cooper, there are so many things that can trigger seizures: loud noises, acoustics in buildings, even certain people’s voices, heat, excitement…
When we go places we have to consider every aspect of the environment: Is there a lot of background noise, like a restaurant with clanging dishes? Are there people talking loudly? Is it exciting? It is hot? All those things come into play, and as a parent of a child with this kind of condition, you feel like you’re walking around with a ticking time bomb in your purse.
You know it may go off, so you’re always on the alert. It’s hard to just relax and enjoy even something like a family party because you’re always watching, waiting, anticipating that something will happen. For years we couldn’t even sing happy birthday. A combination of the excitement and the noise of the song – he would just start ticking like a clock. It wears on you. It’s hard.
When I started hearing about medical marijuana, I was willing to try just about anything.
Since starting medical marijuana about 2 years ago, Cooper’s seizures have been reduced by about 90%. When he first hit puberty, Cooper was having seizures every day, and now it’s just once or twice a month, so he’s doing very well.
The changes in Cooper’s life are amazing in so many ways that you don’t really consider unless you’ve been through something like this yourself. Before medical cannabis, Cooper regularly had seizures intense enough that he had to be given rectal valium to stop them. So, if he had a seizure at school, they had to pull down his pants, and administer medication into his rectum. For a 16-year-old kid, that’s mortifying. Since he started medical cannabis they haven’t had to give that at all – last year or this year, so far. That’s huge.
When March rolled around this year, I knew it was bowling time again.
Even though Cooper has been doing so much better, I couldn’t help but fear that he’d walk in the door of the bowling alley and immediately have a seizure. And we’d have to leave. And he’d be heartbroken, and he’d cry all the way home. He’d be angry at himself. And that, as a mother, is heartbreaking, to know that he feels guilty, he feels angry, he feels ashamed. There’s nothing I can do to comfort him, to make him feel better. My fear going into today was this was going to repeat itself and I hate that more than anything.
I wanted to avoid it, but my husband really pressed me. I was scared; scared for him, scared for us. Sometimes you just want to avoid things because the thought that it won’t work out is just too much to handle. You’re always living with this threat.
But today, I thought I’ve got to let this kid live. I can’t keep him in a box. This is a kid who gets told “no, you can’t do it” all the time from day to day – but it’s so hard to tell him “yes.”
This time, when we decided to let him go bowling, we decided to try a new approach. I’d bought Cooper a vape pen, but up until now had been reluctant to let him use it because it’s too similar to smoking, and after all, he’s still just a kid. But I decided that maybe for an event where we knew there would be lots of potential triggers, vaporizing in addition to his regular oral cannabis oil would be a good option because it’s such an immediate delivery.
Cooper took to the vape pen like a duck to water. We talked about it first, and I explained to him what it was, and I was surprised to learn that he already instinctively understood how it could help him. He practiced the night before. The day of the bowling trip, he used the vaporizer in the privacy of our home, and by the time he got to the bowling alley, the extra dose of medicine had kicked in.
Just a couple puffs and you know what? He had a great day.
For the first time in 4 years my kid got to be a normal kid and bowl with his pals.
My husband and I are constantly aware that he’s just been robbed of those kind of experiences, so to be able to give him that was more than our hearts could handle – both of us cried, because it was so great that our kid could be normal for a day.
For so long, Cooper has been stripped of the ability to be just one of the crowd. So for us to see him be one of the crowd? My god, there is no better gift.
After so many disappointments, days like this are so important for the kid’s self esteem, to feel like, “yes, I conquered it.” Cooper’s life is so full of “no”s, to be able to say yes and have it turn out so nicely is just huge. It’s like Christmas for our family today. Cooper was so happy to be “one of the guys.” Just hanging out, being a kid at the bowling alley.
It seems like so many times he is the one on the outside looking in, longing to be part of that group, and that makes him feel different, less than, not good enough. Even though we know that’s not true and we tell him that, it’s hard for him to really truly believe it. But today, he did believe it and the smile on his face was priceless.
Some parents may gasp at the thought of giving a child cannabis, but we had tried just about everything else without success. I had cringed at the thought of having him use the vape pen – I’d held on to it for 2 years before letting Cooper try it, but I came to a point where I had to set my own prejudices aside in hope of helping my son enjoy a day of being “one of the crowd.”
Just the other day, Cooper said to a news reporter: “cannabis saved my life” – that came right out of Cooper’s mouth. So how could I not do this for him? I just want him to have as normal a life as possible.