Grasping Straws

When I was a kid, I LOVED to shop. There was nothing quite like saving up my allowance or birthday money until I had enough to pick out the perfect pair of clip-on earrings from Claire’s or some other exciting treasure. The mall was such a magical place to my young self. A few years down the road in our pre-teen years, my friends and I would BEG our older sisters or moms to drive us to Jeff City so we could go to the mall. It rarely worked, but we were thrilled when it did. In the days before cell phones for every child, the freedom to roam from store to store and meet back up at the designated place and time felt so liberating.

With time, I had even more freedom—I could drive myself to mall. In high school and college I still enjoyed a fun shopping trip from time to time. But as I’ve aged, buying things has lost some of its appeal. Don’t get me wrong, I still love to find a bargain on Amazon or at Dollar General. But the thought of stepping foot in the mall is definitely no longer magical.

But you know what’s not fun to shop for, like, at all? It wouldn’t be even for the biggest shopping enthusiast. Seizure alert systems. Gage has had some more seizure activity lately, almost always at night. There is usually vomit involved. It’s extremely scary. We are doing our best to get Gage on the right medications to control his seizures, but we still want a way to know about episodes going on that we might otherwise miss.

Luckily, we learned about an awesome organization called the Danny Did Foundation. Their website has been an incredible resource to learn about the different options available for seizure alert systems. They even help families with funding for devices, which insurance usually won’t cover. In our application for a device, I expressed that even if we aren’t granted funding, we were so grateful to have one place with so many options easily accessible. It really made the search for information much more manageable and less overwhelming.  

But even with this great resource, it still feels like we’re grasping at straws. We can do everything in our power to try and get Gage’s seizures under control. We can do extended EEGs, introduce new meds and wean him off ones that aren’t working. We can take steps so we don’t miss anything happening, whether it’s sleeping in the same room or getting extra help from technology. But ultimately, despite our best efforts, we can’t always solve the problem. Even if we’re able to intervene for every seizure, we won’t necessarily be in control of whether or not Gage is ok. It’s a terrifying reality.

The only way I’ve found to combat the overwhelming fear and worry that go along with a realization like that is to keep trusting in a God who is in control. I remind myself that He loves Gage even more than me. After scary moments of seeing my boy suffer and doing all I can to make sure he’s ok, I always finding myself praying for peace. I do my best to let it wash over me and try to take comfort in that.