Month: September 2018

As I shared several weeks ago, Gage has had some unusual seizure activity this summer and we want to try to get to the bottom of what’s going on. We are pursuing an extended EEG that will take place in our home at the end of the month. But the first step to getting that scheduled was doing a standard EEG at the hospital, which was last Thursday afternoon. So, as we often do, Gage and I were going from one appointment to the next and decided to spend time in between running errands in town instead of driving back home. On that day in particular, it’s like people couldn’t stop noticing Gage and were going out of their way to say hi to him and tell me how cute he is. Those interactions always bring a smile to my face.

Our day started with therapy and on the elevator ride up, a sweet older woman told Gage how much she loved his glasses and she thought maybe she needed a blue pair. After therapy, we met Gage’s daddy and grandpa for lunch near the hospital, and some other diners came up to greet Gage and tell him how neat his chair was. We still had a little time to kill after lunch, so we ran to the store for a few things and the cashier checking us out was full of questions about Gage…”Can he talk? What does he have? Good luck to you all.” It gave me a chance to explain the ways Gage does communicate and just how much he understands. As I loaded him back into his car seat when we left I told him that he makes a big impact on people, even strangers that he’s never met before. I really believe that’s true.

As Gage was getting hooked up for the EEG, he would giggle and respond to all the songs I was singing to distract him. The techs were great and worked quickly and were able to put on the electrodes just with the sticky gel and not the extra adhesive, which made removing them so much easier than last time. They both commented on what a great laugh Gage has. Before we went back, I was telling Gage what to expect and told him about the colorful wire ponytail he would get and promised to snap a picture so he could see. With my phone in selfie mode, he checked himself out and shared his killer smile, as usual.

Throughout the test, I was dying to ask all kinds of questions, but knew the response I would get (which I did when I couldn’t resist asking) that the doctor would read the results. I know the techs know something from what they’re looking at and I wish I could discuss things with them as they happen. They hinted that just because we don’t see outward, physical signs of something going on, doesn’t mean there’s not data gathered to tell us more. After the doctor reviewed things, he confirmed there were abnormalities, which we had also learned from and EEG we had about a year and half ago. So we are moving forward with a longer, 72 hour study to see if we can observe anything that’s happening in his sleep. That’s one of my main concerns, because I’m just afraid I’m missing something that’s going on. If we can shed some more light on things, perhaps there will be an important treatment option to try that we haven’t pursued yet.

When we finished at the hospital and headed back out to the car, we were stopped at the door by a woman who greeted Gage and me like she knew us, as if we were old friends. Turns out she was another special needs mom with a child who’s now grown and her experience led her to take notice of kids and moms like us. She expressed interest in Gage and shared encouragement with me. It was yet another interaction with a kind stranger on that particular day. All the credit goes to Gage’s good looks and charm for why people are drawn to him, but it’s nice for me to. Maybe God knew I could use some extra encouragement on that day, at the end of a busy week, especially with the out-of-the-ordinary appointment we had, which sadly feels a little too routine. I know a year ago I wouldn’t have scheduled that visit without Evan coming along with us for support. But it didn’t seem like quite as big of a deal this time around. I’m not sure if that’s because we’ve done it before, or because it seemed more like we were just checking an item off a list to move on to the next step. Even though I downplayed this test, maybe all those strangers were led to reach out to us, not just because Gage is so irresistible, but also as a way to make me feel God’s love. Whether that was their intention or not, in the same way that Gage’s exuberance touches others, those interactions make a big impact on me.