Month: November 2018

I was lucky enough to spend the past weekend with my mom and sisters at the Lake for some rest and relaxation. It’s a new annual tradition we’ve started after my mom retired last year and it is WONDERFUL! We get together and eat too much, take it easy, catch up and just enjoy each other with no other distractions (a.k.a. no kids).

I was the last to arrive at my parents’ cabin Friday night and was greeted at the door with hugs and a glass of wine! We had a little time before our dinner reservation and all exchanged small gifts with each other. I was thrilled to get a new pair of Christmas socks, a 5 year journal and some lip gloss! But we shared more than just gifts. Sitting around the table together, these sweet women shared their hearts. And it was beautiful. They seemed caught off guard by the tears that sprung up as we talked about our weeks and chose our favorite bible verse cards. I, on the other hand, am used to spontaneously crying at the drop of a hat! Something my sister Lee said really made an impact on me. She attended some diversity and inclusion training at work, and had a get together with friends recently, all which left the same message on her heart, like God was telling her the same thing over and over. That we are the light of the world. We are meant to shine in dark places, all places.

I can’t remember exactly how Lee articulated that message, but what a great reminder! I think it’s so easy to get caught up in our own little world, especially with the busy and hectic lives we lead. Sometimes we’re so focused on our routines or to do lists that we forget to engage and share with others, or ‘let our lights shine,’ if you will.  I thought about her message in another way too. That ‘light’ can radiate from unexpected places, like the smiles and laughs of children. I could never have anticipated the positive impact that Gage, just by being himself, has on so many people around him. He’s loved by so many and shines his light and shares his joy in the purest, simplest ways. Maybe the rest of us are overthinking it and making it too complicated.

Another phrase that ‘the light’ brings to mind is a note I saved in my phone the first time I heard it, “The wound is where the light gets in.” I guess that quote is actually Jason Gray’s version of another from the poet Rumi, and he also has a song by the same title. I won’t be able to put it as beautifully as he did, so you can see his story behind the song here. And if you’re a music lover like me, listen to the full song here. Essentially, his message is that the hard stuff makes us better versions of ourselves as we work through the healing process. I just really appreciate the thought that our challenges and struggles can be worked together for good, even though they may break us. I’m not sure the healing process for our wounds is ever complete. I think it’s ongoing, and we can have setbacks and triumphs along the way. But if we can find a way to keep sharing and letting others in, and ‘shining our light’ through the journey, not only will we benefit, others may as well.

This week, I had a unique opportunity to share with students studying to become therapists. I love that their teacher wants to give them a parent’s perspective, and a peek into our real lives, as part of their training. When I was asked to be a part of this class presentation by another mom several weeks ago, I excitedly agreed. But I have to admit, as it got closer, I started to think of all the reasons I didn’t want to do it. Caleb would have to tag along, Gage would miss another morning of school, I’d have to drive out to Ozark instead of staying in town. But I was going to stick with my commitment. Then, things started falling into place. A friend not only kept Caleb for me that morning, but made me a delicious cup of coffee for my drive, (which was quick and easy) and fed me lunch after! In the class, I shared about our experience with Gage, then he got down on the ground and showed off his rolling skills on the mats on the floor. Each time he made it from back to belly, the whole class cheered and Gage would bust out into laughter and share a proud smile. Talk about shining a light! The students shared in his excitement and Gage LOVED all the attention. When we had fielded the students’ questions and wrapped up our presentation, the instructor came over and prayed with us and our kids and spoke the most beautiful words about all of us being children of God. Thinking back on the day, I realized all the blessings I would have missed out on if I had said no, like an offer of help from my friend and a welcome prayer from a stranger.

If sharing our story is one way I can shine a light in this world, I’m happy to do it. Gage’s light shines where ever he goes. And so often, we benefit from the ‘light’ and kindness of others. What I’m most grateful for is the source of that light…Jesus! The same one who’s healing the wounds where the light gets in and working things together for our good.

“Again Jesus spoke to them, saying, “I am the light of the world. Whoever follows me will not walk in darkness, but will have the light of life.” – John 8:12 

Last week we had the incredible privilege of receiving a ride-on car for Gage through the Go Baby Go! Program at Missouri State University. I’ve heard about the program before, which adapts vehicles for kids with mobility issues so they can sit in them and drive them independently. To my knowledge, this is the first time the program was available in Springfield though. I was excited for the opportunity to participate from the first time I heard about it, but I couldn’t have imagined how awesome it would be until we actually experienced it.

When we arrived and were waiting to be matched with our team of OT and Speech Therapy students, we were hanging out with all the other families. I would notice a mom and child who I only “knew” through Facebook connections and excitedly introduce myself and Gage. It was so nice to meet people in real life whose stories I’ve followed or whose advice I welcome via the internet. I told several MSU students and faculty that the day felt like a reunion of sorts of people I had never met in real life! There were also a few familiar faces of other kids and moms who we’d met through previous therapy sessions, etc. and seeing them there, excited like me, was so much fun!

A team of 5 eager students introduced themselves to us and took us back to see Gage’s car…a sweet SUV with shiny “chrome” wheels and his name on the hood! It is so cool! They wanted Gage to sit in it so they could get an idea what kind of adaptations would be needed to make it work for him. With Gage’s excitement level, his extension and tone were in full force. Getting him to sit down on his bottom was the first challenge, but once we wiggled his little booty down into the seat, the students could brainstorm how to make it supportive enough for him to sit independently. They were so wonderful to think up ideas and take input and suggestions from me and make them a reality. Once Gage realized he could drive the car himself by pushing a big red button on the steering wheel, he was happy to stay seated and make it GO! But he had to get out so the OT students could do more work, adding lateral supports and a taller head rest and harness.

Gage moved back to his wheelchair and was perfectly happy to soak up all the attention from the speech therapy students who helped him finish his lunch, blew bubbles and played all his favorite songs for him on You Tube. As they continued working away on Gage’s car, one by one, the other kids’ modifications were completed. Out of the corner of my eye, I’d catch a glimpse of a pink sports car zooming past the open door to the hallway, with the happiest little girl you’ve ever seen in the driver’s seat. The joy on all the kids’ faces when they took off was priceless.

Gage’s was the last car to be completed. He was totally patient throughout the process (again, because of all the attention being showered on him) and the wait was well worth it! Once we got him back into his car, I was so impressed how great the seating worked for him. Who knew what some PVC pipe and pool noodles could make possible? Gage was thrilled to take off, and nearly ran straight into a table, but one of the OT professors made a diving leap to keep him safe! That prompted a reminder about the emergency off switch on the back of the car. It also has a remote control so Gage can sit in it while I drive, but I have a feeling he won’t let that happen very often. There’s even a cable to hook up a phone or iPod so he can rock out to his favorite tunes while he’s cruising! They really thought of everything.

When we got home that afternoon, we immediately got the car out and Gage showed off for the neighbor. Of course, Caleb had to take it for a test drive as well. And when Evan got home from work later, Gage loved cruising around the cleared out garage. Sunday afternoon was the last day it was warm enough to play outside, but Gage spent a ton of time wheeling around through the crunchy leaves all over the yard! I was amazed that for the whole time he was in it, he never stopped smiling and giggling, laughing the hardest when he would get away from us and run into the fence, or barely miss the landscaping that borders the patio. I told Evan how impressed I was, because it’s one of the only things I can think of that keeps him entertained for a prolonged time without someone right there with him. I think the fact that he has a certain level of independence is what makes all the difference.

I’m so grateful that we had a chance to take part in this program and beyond thankful to the faculty and students who not only gave us an awesome new toy, but seemed to really care about Gage and making it work for him. It’s so refreshing to be around a group of people so invested in my child, with an understanding of the impact inclusion can make. There aren’t a lot of things that Gage can do just like every other kid. To have one thing that he can is such a huge blessing.

I’ve been asked a lot lately how certain things are going with Gage and I just wanted to share an update here, since I honestly can’t remember who I’ve shared what with. Last week, one of Gage’s therapists asked me how things went at his appointment and I just looked at her with a blank stare, racking my brain to figure out what she was talking about. Eventually I realized she meant the appointments at St. Louis Children’s Hospital that caused us to miss our last appointment. I’m all over the place lately and constantly have a bad feeling like I’m forgetting something. Yikes! Since I know so many of you are interested in all things Gage, here’s a little about our last few weeks.

After the extended EEG we did, I tried to patiently wait for a report on results, only to find out Dr. Collins, Gage’s neurologist, was out of town for a conference. I posted something about waiting for results, and that very next day, as if the prayers I hadn’t even formed yet were answered, I got a call back from his nurse. While he was away, the doctor reviewed the EEG results. He confirmed that Gage did have 2 seizures during that time and recommended changing his medication. We started slowly introducing topiramate. The first weeks were a little rough. Gage had a very hard time sleeping at night, and I couldn’t be sure if it was a side effect from the new medicine, or just him wanting to be cuddled instead of in bed alone. So many possible side effects are especially hard to pinpoint with a kid like Gage, because he can’t tell me exactly what’s going on. But we’ve stuck with that new medicine for now. Per instructions, we checked in with the doctor after reaching our goal dose. I called a little earlier than the end of the third week, because one night last week Gage had a small seizure at bedtime. His doctor said that his old medicine (Trileptal) he was still taking could be causing problems, so we’ve started weaning that one, and are nearly off of it completely. The doctor said we could discuss other options if we still aren’t happy with the new med as time goes on. Hopefully things will settle and we’ll start to get a better understanding if this is the best treatment for him. I don’t want to jinx anything, so I almost hesitate to even type this, but we did have 2 nights in a row of Gage sleeping in his own bed from bedtime all the way until morning! Halleluiah!

Another update to share has to do with the appointments I mentioned at St. Louis Children’s Hospital. Our first one was with the neurosurgeon, Dr. Park, who performs SDR. We were following up on our initial consultation with him that we had back in March. From his perspective very little had changed and he said he would be very hesitant to do the surgery, explaining that it might not have much of an impact on Gage’s outcomes. That is basically what both Evan and I expected to hear. From there, we went downstairs to see the orthopedic surgeon who works collaboratively with Dr. Park on patients who get SDR, to do tendon lengthening when it’s needed. He told us that operation is something you only want to do once, and recommended waiting until Gage was standing and bearing weight more, if we were to pursue it in the future. Both doctors assured us that we are doing the right things, like therapies and exploring options and taking advantage of the resources available to us. They also said we could come back to follow up in another year.

A couple other things going on in the world of Gage. Yesterday he returned to hippotherapy at Dynamic Strides after a couple month hiatus. He did so awesome! No tears at all, and looked so big sitting up on Johnny Cash, a pony he was riding for the first time! And later today, we’re headed to MSU to get an adapted car for Gage through the Go Baby Go program! I can’t wait. I’m so excited to see what he thinks of riding in his own vehicle with the chance to be in control. Stay tuned for more details (and of course pictures) from that!