Author: Hannah

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.  

Do you ever feel like God put you in the exact place you needed to be in that moment? I’ve had a couple instances of that over the last few weeks, both times at friends’ get togethers with a random assortment of people gathered. The celebrations included connections from different places all sharing a common friend. Even though I didn’t know everyone, I felt like I did and had lengthy conversations with people I hadn’t met before. 

Our discussions involved everything from Miracle League baseball to the best place to buy absorbent bandana bibs. It was awesome to meet new, friendly faces. Both parties we were at, we stayed way longer than I had planned, but it was time well spent. Joining friends out on a farm for a potluck, I met someone whose nephew also has cerebral palsy. It was clear the two have a special bond and she spent lots of time with him. She told me about his games playing baseball with the Miracle League and we also discussed surgery, school and everything in between. Others there did a great job loving on my boys, even if it was their first time meeting them. Gage delighted everyone with his charm and giggles and Caleb got to take a ride in the side-by-side. He even came home with a new prized possession—an old cow tag that he shows to everyone. Is still rides in the car with us everywhere we go. When I took Gage to school the next day, his chair was still covered in dried mud and blue cupcake frosting, a sure sign of a good time.

A few weeks after that, we visited some other friends who host a Memorial Day BBQ every year. Even though we’ve been multiple times in the past, it was my first time talking with some of the other “regulars.” The host’s sister works for SPS. I was sharing about Gage going to Kindergarten in August and how I’m still in disbelief but had a really great feeling about his classroom teacher. She asked who it was, and when I said the name, her face lit up and she raved about how much she loved this amazing woman. I may have teared up a little and it made me oh so happy to hear that from someone who knew her well and had worked with her. I’ve only met Gage’s new teacher on one occasion, so affirmation of my gut feeling was wonderfully reassuring.

As the night went on, a neighbor from across the street and her family joined the party. After meeting Gage, she told me about a program I’d never heard of – TOPSoccer. She works for Lake Country Soccer and it’s something fairly new they’ve started. Leagues start at age 5, so she encouraged me to sign Gage up in the fall. As she talked about kids playing with buddies they’re matched with and a child in a wheelchair scoring a goal, the smile never left her face.

Another person I met that night was a mom who noticed Gage’s “I Heart Bacon” bandana bib and told me about someone who makes and sells really cute ones that she discovered at St. Jude’s. Although this woman was facing a MAJOR battle in the form of a cancer diagnosis for her baby boy, she still radiated kindness and joy. She spoke about her journey with such poise and a spirit of gratitude which really made an impression on me. She brought bubble gloves for all the kids and smiled happily as she watched them play. The bubble blowing transitioned into an epic end of the night dance party in the driveway! It was amazing.  

Looking back on both of these celebrations, I’m just so happy that my family and I were there. I know it wasn’t by accident. Memories of Gage rolling a ball and squealing with delight with a friendly teenager, or Caleb learning a new handshake won’t soon be forgotten. They are good reminders that the effort to go places and do things is worth it. I’m grateful that we have those opportunities.

A few weeks ago, I was in my typical Tuesday afternoon spot – sitting in the Dynamic Strides Therapy waiting room while Gage took his weekly pony ride. Caleb and I were reading books when I looked up and saw Gage’s therapist waving me into the arena. Panicked, I jumped up and told Caleb to stay put. As I swung the door open, I heard Gage gagging and coughing and sprinted over to where he was sitting on his horse.

When I got there, I was greeted with a confused look from his therapist and (once his throat was cleared) a big laugh from Gage. Turns out, his therapist just wanted to brag on him and show me how great he was doing moving rings onto her arm. I had assumed the worst and thought he might be having a seizure or something. By the time I realized nothing was wrong, my emotions were already in overdrive and the tears came anyway. Gage just kept giggling at me. I laid my head on the horse’s shoulder to compose myself while the PT explained that the coughing as I came through the door was just unfortunate timing.

Relief swept over me and I told Gage how proud I was of how great he was doing, now laughing through my tears. When I returned to the waiting area I thanked the other moms in there for keeping an eye on Caleb and assured them that Gage was fine, explaining my misunderstanding. It was easy enough to make light of the situation since there was nothing wrong. But the fact that it happened, and that I reacted like I did, left me with a nagging feeling.

When I told others about what happened, I just laughed about it and poked fun at myself for overreacting. But I was still bothered by the fact that I’m conditioned to respond with panic. I don’t want to assume the worst, but if I’m being honest, more often than not, that’s exactly what I do. I will let my mind wander to the most negative scenarios. I want to be someone who expects good things. I want to have a sense of calm and peace that’s always an underlying presence. In reality, experience has taught me that sometimes my worst suspicions or fears are confirmed.

But not always! Just like that Tuesday afternoon, when my imagined emergency was really just my awesome son doing awesome things during therapy, leaving his PT so delighted and impressed she wanted me to witness it. So from now on, I will do my best to avoid the temptation to panic and instead stay focused on the good.  

Spring in Springfield is full of fun for little ones! We’ve had back to back weekends of good times at local parks. Last weekend we enjoyed perfect weather, pinatas, kites and ukuleles at the Cherry Blossom Festival!

While we had a great time, I’m pretty sure the rest of the city’s population was there too. The crazy large crowd made decide to opt out of “Easter at the Farm” the next weekend. That is, until this morning.

With the cool temps today, I figured the crowds would be pretty thin, and Caleb told me he wanted to meet the Easter Bunny. Based on our past experiene with mascot characters and Santa, I had my doubts he’d follow through, but thought, “what the heck?” When we got there we hopped right into a short line to get a picture with the Bunny. Both boys gave me great smiles and high fived the Bunny. As we walked away Caleb said, “I wasn’t scared at all!” We made crafts, hunted eggs, said hi to the animals, had a picnic lunch and played on the play set until the frigid temps were too much to handle and nap time arrived. Caleb didn’t quite make it home before falling asleep.

As we go about our day to day routines, there are a few things that make our lives a bit easier. I thought I’d share a list of some of my faves in case it’s helpful for any other special needs parents out there. Most of these aren’t made specifically for special needs, so they may be helpful to other moms too!

Bandana bibs

My Amazon cart stays filled with a variety of cotton bandana bibs. They are a wardrobe staple for Gage to catch extra slobber that would otherwise soak his shirt. I’m not brand loyal to any particular ones, just search for fun patterns and make sure they have absorbent backing and snap closures. One of Gage’s awesome therapists has even made some for him! When we get new ones, I always vow to keep them clean, but they inevitably get stained with food or Pediasure. That’s ok though because it’s nice freshen up the selection from time to time!

Silicone sippy cup lids

In the quest to find the perfect vessel for Gage to drink from, we’ve tried every sippy cup in the book. At one point I was so frustrated that none of them worked and they were all just taking up prime real estate in my cabinets, that I decided to start from scratch. I held on to a few of the Dr. Brown’s bottles Gage has been using since he was a baby, and got rid of everything else. My next Amazon purchase was a set of 3 Boon silicone sippy cup lids. What I love about them is that they can stretch to fit over a variety of cup sizes and the cups to use with them can be stacked for storage. Oh, and the fact that Gage can and will actually use them of course. What I don’t love about them is Caleb can chewmmm through them and poke his finger through the vent hole, which takes away their spill proof quality. It can also be a little tricky to stretch the lids over a cup without 2 free hands and a level surface. We’ve had more than one spill on the go when a lid slips from my grip and snaps the full cup, rubber band style. But overall, they’re a big help for us. The brands I’ve tried are Boon and Spekids.

Billy Footwear shoes

Gage got his first pair of Billy shoes a few weeks ago and I’m certain they won’t be his last. They unzip all the way around from the top, which makes slipping his AFOs into them super simple. We have a low rise camo pair, but I think the high top version are in our future!

Cat and Jack adaptive jacket

Winter weather is not my favorite. But I’ve never disliked it more than when kids, extra layers, car seats and wheelchairs were involved, especially since Gage has to be wrestled in to coats or jackets. His tight little biceps and curled up arms make getting a coat on a major chore! Luckily, a Christmas gift from Grandma has helped a ton! Gage’s new go-to winter coat is from Target’s adaptive line for kids from Cat and Jack. It snaps up each side and has sleeves that zip on and off. It still takes extra time to layer Gage up for cold weather, but it’s at least a little easier with this jacket.

Otteroo

As we say good riddance to the long winter and welcome spring, I’m already anxious for summer and the chance to use another one of our favorite things, the Otteroo floatie. It’s a ring that snaps securely around the neck, with a rest for the chin. It’s made for babies, but has a weight limit up to 35 pounds, which my little guy is still under. While we wait for warm enough weather to fill our backyard pool, Gage has used it a few times in the bath tub. What’s great about it is that it gives him the freedom to move his whole body in the water. And move he does! He gets his arms going and kicks his feet and can spin around in a full circle. I was worried that he’d be bothered by it around his face, but he doesn’t seem to mind at all.

Mamas, I know you can relate. Leaving the house every morning can sometimes feel like packing up for a long weekend away, am I right? Here’s a glimpse at the load we had prepared for yesterday.

It included Gage’s talker, ninja turtle pack, Gage’s school back pack, and a pool bag for swim lessons. Oh, and a big box of PBS KIDS goodie bags, which I forgot and had to turn around for so I could drop them by the zoo. Add a coffee mug and snacks to the mix and we make no less than 3 trips to the car before we’re ever ready to leave.

The bags vary day to day. They might include my laptop bag so I can work from my mobile office, aka drivers seat, while Gage is at school. Of course the swim bag isn’t an every day thing. At least twice a week, there’s a lunch box packed for eating on the go in between school and the next therapy session. And the ninja turtle is essential every time we leave the house. Not only does it hold must-haves like diapers, a change of kids clothes and hand sanitizer, it’s got Gage’s emergency seizure meds packed inside. Luckily, we’ve only needed to use them once so far. But a sense of panic sets in if we’re heading somewhere or out and about and I realize Leonardo isn’t with us. I usually don’t even bother with a purse anymore since it’s just one more thing to carry.

I’m not trying to complain and definitely know I’m not alone in this. But all that’s required to leave our house makes me appreciate the times we don’t have to even more. As I snuggle a happy, just waking up Gage this morning while I type and watch Louie snoozing peacefully, I’m looking forward to our nice relaxing Friday together! Days at home with my boys are my favorite!

We got to celebrate one of our buddies turning 4 last weekend and had a great time at Jump Mania!

Last week we had a visit from our service provider with Capable Kids and Families. This is an awesome program that lends equipment and provides other resources to families like ours. I can’t say enough good things about them. Our visits from them are always so much fun and our friend brings the coolest toys to share with us. Many are switch adapted, meaning Gage can activate them with a simple push of a large button. He’s very motivated to reach for it, especially because he’s in control! The toy we got to borrow this month was the perfect way to set the stage for the upcoming Easter holiday, and is also hilarious.

I’d guess we’ve listened to ‘Kung Fu Fighting’ no less than 50 times in the week this guy has been on loan to us. At one point, Caleb had enough!

Upon seeing the bunny, however, Caleb requested I find our Easter eggs. So during nap time, I made my way up to the attic to drag down the Easter stash. There was a leftover egg dying kit from last year in the mix, so we put it to good use!

We managed to drop about half the eggs on the floor, and each time one fell, Caleb would say, “uh oh, it’s hatching!” Of course we had to sample the goods when we were done. I’ve got some awfully cute taste testers.

All this Easter cuteness inspired a photo shoot a few days later. Caleb does not share Gage’s love of having his picture taken, but I think I still captured some sweet moments.