Month: October 2019

I don’t have a clever title or organized thoughts for this post, but wanted to share some updates about Gage because we’ve had some recent changes. Last week was his parent teacher conference. I’m so proud of how hard my boy works in school and I love that he loves it. He’s got an AMAZING team of people there with him each day and I am incredibly grateful. I got to learn about his favorite things to do in the classroom, like wishing his friends well, or choosing from Mr. Potato Head if he’s going to commit to having watchful eyes or listening ears.

I adore his teacher and her obvious love for each one of her students. Part of her being such an incredible teacher is recognizing Gage’s needs as a whole person, and not just a student in her classroom. We talked about the increase in seizure activity that Gage has had since school started. It has all been at home and not at school, thankfully, but we both suspect that maybe exhausting school days and all the stimulation in the classroom could be contributing factors. Based on what we’ve seen, we’ve decided to shorten Gage’s school days to end at noon each day.

While it feels like the right choice for us, it’s still a hard decision to come to because I know how much Gage loves school. After such a great start to all the adjustments of a new school, riding the bus for the first time, and getting used to a new routine, it seems like a step backwards. But I always said we’d take the lead from him and if he needed a change, he would let us know. God, how I wish his precious little body had better way to communicate that we’ve taken on too much.

Along with a shorter school day, we are taking a hiatus from speech therapy at MSU. Our 5 pm appointment time has always been a challenge and we’ve already missed several days this semester because of seizures in the afternoon or illness. Even on a good day, it’s hard for Gage to give his best when he’s already worn out from a full day by that time. Making the choice to stop that therapy was especially hard, because I feel like we’re not following through with a commitment we made to work with their students. The speech clinic there has been nothing short of amazing and served us so well over the last couple years – it’s thanks to them that Gage even has his communication device. So I hate to put an early end to something I value so much. But the clinic director reminded me on the phone earlier this week that real life doesn’t operate on semesters and they understand.

Earlier I said that Gage’s seizures have all been at home, not school, but that’s not entirely true. Last week on the drive home from swim therapy, he had a seizure while we were in the car. It was one of my fears realized, us being the only two in the vehicle and having to pull over and scramble to get him out of his car seat as cars whizzed by on a busy highway. I was trying to reassure Gage the entire time, like I always do, but there was no comfort whatsoever in my shaky, panicky voice. After things subsided, I pulled off the road to a nearby park where Gage slept in my arms until a second seizure woke him from sleep and he vomited. At home that night he was in Evan’s arms at the dinner table when every muscle in his body became extremely rigid and from his clenched jaw scared cries escaped. I carried him to our bedroom, away from Caleb, and planned to administer rescue meds which Evan quickly delivered to me. Before I could, his body relaxed and he quickly calmed. My prayers that followed were both of thanksgiving that he was ok, and desperate pleas for help.

I don’t write about this experience to worry or depress anyone, or seek sympathy. But the reality is that things get scary sometimes. There are so many people in our lives who love and care deeply about Gage, who I believe truly want to know what’s going on, so I’m willing to share, albeit with some hesitation. Even if it’s easier, I don’t have to gloss over the details, even the painful ones. At the same time, I also believe that speaking about the struggle can be it’s own form of testimony. No, in this moment, we aren’t celebrating a triumph. But our faith is still there, as an underlying foundation. God has not forsaken us, and he is placing people in our lives at exactly the right moment, to help us pull through–texts from friends checking in, powerful words of prayers, truth in scripture shared, and friends on our doorstep at quite literally the perfect time. Through it all, I love the way God loves us and I love the people he uses on earth to make us feel it.

At the end of the week, we have an appointment with Gage’s neurologist. We’re in frequent communication with him, and we’ve recently increased his daily dose of seizure medication. If we don’t see improvements, we’ll make another change or switch. I feel like I’ve been piling up a list of sooooo many things to talk about, and the cynical side of me wonders if I’ll leave the appointment without any answers or a clear direction for next steps. It just seems like that’s the nature of the beast that epilepsy is–it leaves you guessing, which all too often correlates with living in fear. There’s not always a clear answer to questions of why or how. I would love it if you would join me in praying that this appointment will be productive and helpful. I also covet BOLD PRAYERS that Gage will be seizure free. I don’t know what it looks like, but I hope that we can be on a path to that freedom.

The song “Rainbow” by Kacey Musgraves has taken on a very special meaning to me, since the first time I heard it. It was introduced to me by my dear friend Lizette.

Lizette’s been a friend for nearly my whole life. She’s always been a fan of all different types of music, usually has a song memorized the first time she hears it, has a knack for remembering song titles and artists and has a beautiful singing voice. Her musical aptitude is one of the many things I love about her. She’s also a very loyal friend, always ready to have a good time, with a strong sense of who she is and what is important in life. If you’ve had the pleasure of meeting her, you don’t need me to explain how likable she is. She just is.

Earlier this year, Lizette was diagnosed with breast cancer. When she called to share her news, she immediately started offering me comforting words and reassuring me that everything would be ok. She has handled the entire thing with so much grace and courage. But she’s also been genuine and authentic about her struggles and fears, in a way that I love. 

Weeks before the phone call with the bad news, Lizette and I were collaborating with some other friends to plan a long overdue girls weekend. Like I said, she is always down for good time. Four years ago she hosted the group of us in Kansas City and the following spring we kept the tradition going and met up in mid-MO. But time passed and the next thing we knew, it had been three years without anything planned. We chose Springfield as our destination this time around, and booked a ride on the Trolley Bike. Amazingly, the date somehow worked out for everyone and we started getting excited to reunite with the group! All of this was set before any news of Lizette’s diagnosis. Once that happened, things seemed to move so quickly. I’m sure it was much more of a whirlwind for Lizette than anyone, but she was still determined to make it to Springfield–just days after having her port placed and days before her first chemo treatment.

That weekend came and we all had a great time on a gorgeous spring day in downtown Springfield. The way timing of everything worked out, that much needed girls weekend turned into something more–the chance to rally around our friend at a critical time, but also just to spend quality time together having so much fun! Per Lizette’s request, after dinner we made our way to a karaoke bar. As you might imagine, she’s a natural on the stage and graced us with more than one delightful song. We danced, laughed, drank and made some unforgettable memories.

The night ended with a good old fashioned sleep over. Another friend and I were back at the house where we stayed before the rest of the group arrived home. When they walked in the door, one was dabbing tears from her eyes. I was eager to get filled in on what I missed, assuming something hysterical happened during the ride home and everyone laughed so hard they cried. It wouldn’t have been the first instance of that that day. As it turns out, the tears weren’t the hysterical kind, but the emotional kind, invoked by Lizette singing a song called “Rainbow.” I was bummed to not have witnessed this special moment firsthand, and I had to know more about this song I’d never heard.

Back at home the next day, I smiled to myself scrolling through all the goofy pictures from our shenanigans, then googled this mysterious song that prompted such a somber moment in an otherwise wild, carefree day. Tears streamed down my cheeks as I watched the You Tube video. Since that weekend, I can’t hear that song without thinking of Lizette, often getting emotional all over again.

A couple weeks ago, Lizette’s family and our hometown hosted a benefit to help her pay for medical expenses. Evan, the boys and I loaded up Friday afternoon a hit the road to Tipton as soon as we could get away. Our drive started in the pouring rain, and an exhausted kindergartner, who’s notorious for being cranky on long car rides, was having an especially rough time on this particular trip. I’m so grateful that Evan willingly drives each time. As usual, I climbed to the back seat and did my best to console a very upset Gage. As I sat on the floorboard, negative thoughts consumed me. Why is it always like this? Will this ever get easier? Why don’t I know how to comfort him? And then, I caught a glimpse of just the hint of color against the gray sky. As we drove along the twisting, turning road, the rainbow stayed in our view for a long time, the colors becoming brighter and more vibrant. In that moment, the negativity slowly seemed to fade away. Gage’s screams faded as well. It was all going to be alright.

Sure enough, we arrived safely in Tipton and got to the venue for Lizette’s benefit before they finished setting up. Since we were in town for the weekend, we took advantage of some family activities that we normally miss out on being a few hours away. Saturday before the benefit, my nieces were singing at a local festival. We got there in time to hear the first song, then enjoyed a car show, bouncy house and turkey legs before the next performance. My niece’s solo was the very last one, so while we waited to hear her, we listened to all the other sixth grade soloists. I had Gage propped on my lap on the bleachers and didn’t even realize he’d fallen asleep until my sister pointed out that he was snoozing. I did my best to make him comfortable while he rested, and found myself overcome with fear.

Lately, Gage’s seizures are almost always when he’s waking up out of sleep. Just days before the festival, he had a really intense seizure waking up from an after school nap. As I held my sleeping boy on the bleachers, I couldn’t seem to keep myself from thinking, what if he has a seizure here? What would I do? What can I do right now to keep it from happening? I just held him there in my lap with an uneasy feeling as I listened to the middle schoolers sing their hearts out.

Then, an adorable, spunky looking girl I didn’t know made her way onto the stage. She was a least a head shorter than any of her peers waiting beside the stage for their turns to sing. She seemed to bounce, not walk, up to the microphone and introduced herself. Then she said “I’m going to sing Rainbow by Kacey Musgraves.” I turned to my sister with panic in my voice and said “oh my gosh, I’m going to cry.” Those were the only words I got out before she sang the first line and silent sobs overtook me. I did my best to duck my head behind Gage in my lap, trying not to draw attention away from this tiny star on stage with my blubbering. It took a few verses, but I eventually pulled it together before the song ended. When I had recovered, my sister asked if she could know more about what was going on, so I shared with her why that song had a special meaning and always made me think of Lizette.

It wasn’t until later that week (after a beautiful solo by my niece and a wildly successful benefit for Lizette, by the way) that I took time to reflect more on my mini meltdown at the Ham and Turkey Festival. Yes, that song always makes me cry, but I feel like the song was only part of the story. There was more going on with me, and maybe more going on with rainbows.

Rainbows–a physical reminder of God’s promises to us. We’re not promised a life free from storms, but God never abandons us, even in the midst of them. We don’t have to stay stuck in the storms. It’s tempting to be so consumed with fear that we fail to realize when it stops raining. Rather than sitting with my sleeping child in my lap, worrying about the what ifs, or crammed on a floorboard, focused on the bad, hard parts of a long road trip, perhaps I need to shift my focus to the beauty in the sky outside my window.

This morning as I got Caleb ready for school in a dark room (he complains if I turn on the light too quickly after he wakes up) it occurred to me that colors can’t be distinguished in the absence of light. I flipped through the shirts in his closet, not quite sure if the one I pulled off the hanger was red or blue.  I chose a pair of shorts that I hoped were gray so he wouldn’t be too terribly mismatched.

In the middle of the dark, I want to maintain enough perspective to know, even if I can’t see, that I’m surrounded by colors. They’ll show up when I let the light in. God’s light–shining through amazing vessels in my life–Caleb’s cute little quirks first thing in the morning, Gage snuggled comfortably enough to fall asleep in my lap, Lizette’s spirit that won’t be dimmed even in the midst of a storm. I need to stay focused on the truth in God’s promises and really believe that it will all be alright.

If you want to learn more about Lizette’s journey, she shares updates here. Last Wednesday she had her double mastectomy. She is now recovering at home with her husband and daughter.

“Rainbow”