Month: July 2019

Earlier this month, our week started off with some great news. One Monday morning I missed a call from a number I didn’t recognize. When I listened to the voicemail I was thrilled to hear the message from the Danny Did Foundation. Evan was home to entertain the boys (since we all know phone conversations with children present are nearly impossible) so I stepped outside and called them back right away. The kind gentleman I spoke with asked me all about Gage, what his seizures have been like lately, if we’d reviewed the different options for alert systems and more. He explained their mission is to make sure families have found a good fit for what will work best in their lifestyle. After several minutes of discussion, he told me that we would be granted the funds to cover the cost of a camera monitoring system. I was overjoyed. He explained to me how the process worked and after I hung up the phone, I hurried to tell Evan the happy news!

Later that same day, we were able to order the device, a SAMi video monitor. It detects movement during sleep and activates an alarm in our room if the movement lasts longer than a specified amount of time. In less than a week, the camera had arrived on our doorstep. We spent Sunday night getting it set up and then fine tuning the different options and settings to see what we thought would work best. I think that fine tuning will be an ongoing process. But for the last week, Gage has slept in his own bed at night. That may seem like a small feat, but it’s a big deal for us. Having a way to monitor him while he’s in a different room has given us a least some peace of mind.

A few weeks ago I wrote that trying to find a solution for Gage’s seizures at night felt like grasping straws. There are so many unknowns in our world and so many things outside of our control. But I will always been incredibly grateful for any and all help that we get along the way, whether it’s another mom offering helpful advice or organizations like the Danny Did Foundation helping families like ours. The Foundation began to honor the memory of a young boy, Danny, who passed away from SUDEP (sudden unexpected death in epilepsy) just before his 5^th birthday. It was Danny’s uncle I spoke with on the phone that morning, and he expressed a sense of gratitude that his nephew’s legacy is able to live on, even if it’s not the way their family would have liked. I told him that I would never be able to fully express my gratitude, over the phone or otherwise. But from all of our family to all of his, we want to say, “Thank You, Danny.”

July is a big birthday month in our household. Not only is three fourths of our immediate family July babies, we get to celebrate lots of family and friends too. One of those birthdays belongs to my brother-in-law, Aaron. If you’ve had the pleasure of meeting Aaron, he has undoubtedly made an impression. Whether he greeted you with a kiss on the mouth, gave you a unique nickname or taught you a new catch phrase, he’s hard to forget. One of the many things I love about Aaron is that he always has a different figure of speech to use in conversations. They seem go in and out of rotation, some are more appropriate than others, but they’re always memorable. One of his latest mantras, and one of my favorites, is “adapt and overcome.”

A couple years ago, I was at my nephew’s state cross country meet and then headed to a girls weekend with my mom and sisters. Before I could make it out of Jeff City, my car died a couple times. It was leaking oil and causing problems, and Aaron discovered my dilemma before he headed out of town. He met us at a gas station and kept repeating, “adapt and overcome.” Without hesitation, he sprang into action, grabbing a funnel and a couple quarts of oil off the shelf and refusing to even let me pay for it at the register. In no time, he had my oil topped off and my sister and I back on the road.

Adapt and overcome is a fairly simple phrase, but Aaron’s can-do attitude made an impression on me. He wasn’t annoyed or stressed out from our minor inconvenience, which likely pales in comparison to the major issues he deals with on a regular basis at his job. But I thought “adapt and overcome” would be a good mantra to add into my own personal repertoire. In our day to day lives, there are so many times we need to adapt. To me, it’s a good reminder to keep doing things, taking an active role in our lives instead of just saying no and missing out. We may not always be able to participate in the same way as everyone else in all this wonderful world has to offer, but usually with a little extra effort, we can at least participate in some way.

One example of this was at a former family birthday celebration, not in July, but hosted by Aaron and my sister Lee for their awesome daughter Brynn. As you might imagine, Aaron’s big personality makes him a pretty great party host. The year Brynn turned 5, they rented out an entire rolling skating rink for her party and let the kids live it up! As much as I would have loved for Gage to strap on a pair of skates and go to town like the rest of the little ones, that wasn’t an option. But Lee and Aaron still made sure we knew we were welcome at the party. And Gage still got to “adapt and overcome” and get out on the floor in his Mustang gait trainer! He had a great time along with all the other kiddos and the beautiful birthday girl.

Another way we’ve figured out how to adapt and overcome is with travel. When Gage celebrated his first birthday, we started a tradition of doing birthday trips every other year. We save the parties for even years. This year’s trip was a beach vacation in Florida! It didn’t fall on any of our actual birthdays, but I’m still counting it. Knowing our kids would not tolerate the long car ride, we opted for a flight down there. Flying with kids comes with its fair share of adaptations. Although I was nervous about potential damage to his wheelchair, we gate checked it both ways and it actually came in really handy for packing all the stuff we had to lug through the airport. Another necessary adaptation is a car seat for Gage to sit in on the plane since he’s required to be in his own seat for takeoff and landing. I dreaded hauling it through security and to our gate, but with a spot for it to ride along on his chair, it wasn’t a big deal at all.  

While in Florida, we took the boys to the beach for the first time! I was probably the most excited of anyone about this, but it really was magical. It came along with its own adaptations too. Sandy beaches aren’t exactly wheelchair friendly, so we did a lot of carrying to get all of our gear to a spot by the water. We even loaded Caleb down with a backpack. But the giggles from Gage when the rolling waves washed over his toes made all the effort worth it.

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Birthday parties and beach trips are just a couple of ways we “adapt and overcome.” But I realize it’s not always quite that simple. Sometimes as much as you want to overcome an extra challenge, you’re not always able to find a fix. Adapt and overcome may sound like a big, grand gesture, but I realize the way we’re going things isn’t solving all the world’s problems. I’m not claiming to be a supermom and I certainly realize that we don’t have it all figured out. As Gage (and his equipment) continue to grow, simple adaptations may get harder and harder. There are times that we’ll likely have to just say no to some things, and that’s ok. But for now, in the ways we can actively take part in our lives, we will keep making every effort to adapt and overcome. I have a feeling it will be worth it.

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.