By Cathy Jameson
A few years ago, a radio DJ shared that families spend an average $173 on Mother's Day gifts. I laughed. Every year I tell my husband and kids that I don't need anything fancy bought that day. In fact, I don't need much for Mother's Day at all. When I shared what I'd heard that story with my family later that night at dinner, I said, "We're going to save SO much money. All I want is a nap and a sandwich. And since I'm the one who buys the groceries, I'll make sure there's sandwich stuff for the weekend. Someone just needs to make it for me.”
Each year I joke about treating Mother’s Day like a regular day, but my family insists on doing something special for me. I never turn away their gifts, their praises, or their smiles. Today, like always, the kids will shower me with hugs and home-made cards. After I eat my sandwich, I’ll go for a walk. Later, I’ll nap. I’d like for this year’s celebration to be the same as last year’s—to keep things simple.
With how strange life’s been these last two months, I’m craving simpler times. With all the seizures Ronan had 4 mornings last week, I’m desperate for something simple for him, too. Ronan’s seizures aren’t new. But the clusters he’s having upon waking up are. We’re fortunate that we’ve been in constant discussion with our doctor about these changes and are actively working to find a solution. Our phone calls to the doctor are answered quickly. Our emails have good advice. It hasn’t been a quick fix though.
As with other medical issues we manage, what should be simple is complicated. What works for one kid, will not work for mine. It’s all so frustrating. In the middle of it all, though, we celebrate a breakthrough. Ronan told us before one wave of seizures started that he wasn’t feeling well.
On Friday morning, when his device was in a different room, he signed ‘head hurt’ after another cluster ended. Never before has he indicted pain associated with seizures while he’s having them. As awful as that realization was, I was thankful for Ronan ability to still be able to communicate.
The seizures he’s having don’t stop Ronan completely. He quickly resumes the activity he was doing before they started. He’ll sometimes even flash a genuine smile afterward. Even when they are over quickly, the seizures have a way of paralyzing me and my thoughts for several hours afterward. I’m praying the clusters will have subsided, but if the pattern we saw last week continues, he’ll have them on Mother’s Day as well.
I pray he doesn’t. He needs a break from them. His siblings and my husband and I need a break from them, too. If ever there was a plus side to seizures, at least we’ve all been home to help. The quarantine put a pause on many of our daily activities but also gave us the chance to be here when Ronan needs us the most. I feel very fortunate that that happens not just on a seizure day, but every day during the quarantine the kids take breaks from their online learning and check on their brother. They bring him something to drink or just sit and snuggle with him while he rests. They also make him laugh. Oh, the giggles they giggle together! I don’t have that same ability, but I am grateful that Ronan’s brother and sisters can make him laugh as they do and so quickly, too.
I’ll hope for more chances for laughter today. Some days it’s hard to be hopeful because I know that just like autism, seizures do not take a day off for holidays or for special occasions. So, like usual, I’ll be sure to make Ronan as comfortable and happy as possible. I’ll be on my toes looking for telltale signs that a seizure might be on the horizon. If they creep into our day, I’ll ask that we take turns taking seizure watch. I know I won’t have to ask one of the siblings for too much help. On Mother’s Day, like every day, they’ll be sure to give him all of their attention. They’ll already have offered to stay with their brother and for as long as he needs them to.
My head may not hurt as much as his does when the seizures come on, but my heart hurts when I think about what Ronan and other kids like him go through. If I could wish for just one thing today, that wish wouldn’t be for me. It would be to find a way to make their lives just a little bit simpler. What a gift that would be!
Cathy Jameson is a Contributing Editor for Age of Autism.