We’ve been in a season lately that isn’t the easiest. Gage had an extended EEG a few weeks ago that showed us he’s having A LOT of seizure activity all the time. We’ve tried several meds without getting the control we hope for. Another treatment option we’ve explored and are now pursuing is a vagus nerve stimulator, or VNS Therapy—surgical placement of a device that sends signals to the vagus nerve, interrupting the seizure activity in the brain. It all sounds like sci-fi to me and I have a hard time wrapping my head around it. Not just the mechanisms of how it works, but the idea that my tiny boy will undergo surgery, with incisions to heal from, lasting scars, and a foreign object placed under his skin.
It can all feel like a lot and be overwhelming. I’ve been focusing on the logistics and details to try and keep it together—getting as many questions answered as possible, picking the right date on the calendar to best fit schedules, considering lodging options and commutes to Kansas City, and figuring out plans for Caleb. I’ve also cried a lot. So, you know, balance.
The thing I’ve been amazed by, throughout my attempts to process and deal with all this, is the way God keeps sprinkling in reminders of his unfailing love—fulfilling desires of my heart that I hadn’t even acknowledged were there. During our hospital stay for the EEG, I flagged an episode of Gage’s spontaneous laughter, not knowing if it might have a neurological cause. The doctors confirmed it was not a seizure and that news was such a relief! It was coupled with the fact that Gage was averaging 20 seizures per hour, which is obviously not good news. But visiting my friend after the EEG and sharing that positive note about his laughter, it hit me what an answered prayer it was. A prayer I hadn’t even verbalized, but a precious gift nonetheless.
In the week between the EEG and our consult with the neurosurgeon who will place the device, I connected with another parent whose child has used this treatment for 7 years. When I was given a stranger’s phone number, I wasn’t even sure she’d return my text. The moment she did, with a lengthy and positive recap of their experience, I was overwhelmed with gratitude. I just kept repeating “thank you Jesus” out loud, because her response, with practical details and authentic, down-to-earth perspective, was exactly what I was hoping for. I realized that part of me was afraid to ask for advice or learn about others’ experiences in fear that it would be negative and another source of doubt. I know there are no guarantees.
I want to be hopeful about this new treatment, and also be realistic with my expectations. Deep down, I want the courage to expect the best possible outcomes and drastic improvements for Gage. I want to know that what he has to go through will be worth it in the end. High stakes decisions like this have always been tough for me, especially when the burden of the choice doesn’t fall to me, but on my child.
Through my doubts and fears, God just keeps showing up. I’ve reveled in the phone calls from friends and family, a gentle spirit, listening ear and unsolicited prayers from Gage’s caregiver, support from coworkers, and more. Perspective on how He weaves things together, for our good, might be easily missed and I’m so grateful for the times He puts it right in front of my face and takes my breath away.
Yesterday I hopped in my car to pick up Caleb from school. The Journey song on the radio immediately made me think of a friend, so I picked up the phone. We laughed about all the songs that could remind us of each other because of all our crazy college adventures. She told me a little about her work and I filled her in on what’s coming up with Gage. As we talked, we realized that she’s flying into Kansas City on the same day of Gage’s surgery. This friend, who lives over 1,200 miles away, assured me that she’ll find a way to see me and give me a hug. That may seem like a small thing, a lucky coincidence, but if you’ve ever received a hug from this woman, you know it’s a gift from God. Another desire of my heart He is fulfilling, just because He can.
