As the end of the year approaches, I feel inclined to reflect and share. This year was filled with highs and lows. Here are some stand outs.
We kicked off the new year with Gage’s Make-A-Wish trip to Colorado. What an incredible experience! You can read more about it here. Caleb played his first season of basketball and loved it. Evan and I got away for a friend’s 40th in Hot Springs—my first time at the horse races! Winter illness took a toll, as it often does.
Spring brought with it some brutal challenges for Gage in terms of seizures, but also his first season of Miracle League baseball, which was great. We transitioned to summer t-ball for Caleb. Like every summer, we swam or enjoyed the water as much as possible. Evan’s 40th birthday was even celebrated at our favorite backyard pool! We enjoyed tubing, fishing, and boat rides at Pomme and Fellows. Late summer was a week of fun at Camp Barnabas for Gage and with family for Caleb, while Evan and I got away on our own. We cherished all the freedom that came with summer and thanked God for improvements in Gage’s health. We also endured heartache, and grief reared its ugly head in the form of anger at times.
With fall came the return to school, and, unfortunately, ongoing bouts of illness. Big struggles with seizures also returned. I honestly struggle to pick out the good parts of this season, but I’ve welcomed frequent reminders that we’re not alone. Friends and family swooped in to do really practical, but immensely helpful things, and those acts help soothe my bruised soul. Perhaps I’m just not far enough removed yet to pick out my favorite things about this time. The remarkable moments are still raw and feel more like trauma than triumph.
As I write this on the shortest day of the year, I’ll borrow my mom’s optimistic perspective. She loves moving past December 21, because each day after is longer—filled with more light. What a wonderful thing to be able to count on. As we move forward, I’m trusting in better days ahead.
No matter what kind of season you’re experiencing, I hope you too feel loved and seen and can cling with me to the hope that the best is yet to come.
The Facebook memory of this photo had me feeling all sorts of things when it popped up 9 years later. This is a candid shot from Gage’s newborn photo shoot and seeing it took me back in time to that day. The fact that we had a newborn photo shoot at all fills me with gratitude. I hadn’t made it a priority, not knowing what I didn’t know, but a friend insisted she take pictures for us, and refused to accept any payment. She spent not one, not two, but FOUR hours with us that day staging adorable shots of our tiny baby boy. But one of my favorites is the candid one she captured while I was soothing him. It’s not posed and not perfect, but it’s so real. The pacifier poking between fingers…the scrunched up baby body held against my chest…gah, I can almost feel his perfect, soft baby skin on mine.
Seeing this photo brings back so many emotions I was experiencing that day. It was a wide range. I showed up for our session boiling mad after ending a call with human resources about insurance coverage for a medication Gage needed. They suggested I just pay out of pocket while the issue was resolved. The cost of the med was over $1,100 a month. These were the things Evan and I were regularly dealing with in the earliest days in Gage’s life—prescription prices, appointments, unknowns. During those moments, I didn’t realize how far from normal it was. As I ranted about that phone call when first walking through the door, our sweet photographer friend just listened in an understanding way. I’ll always be grateful for that. She was a mom too and offered empathy and grace. Things like sleepless nights and feeding issues typical for many newborns gave me a sense of normalcy—a way to relate to parents I knew—but coupled with some of our “extra” things, it felt overwhelming. I can see now that those hard things positioned us to be on the receiving end of so much kindness and help.
As the photo session got underway, my emotions improved drastically when Gage took center stage, curled up on tiny props and sharing the sweetest smiles. Especially when he was in my arms, the anger easily melted away into the most contented adoration of the precious life I was holding. What a gift he was and still is. And what a gift are the amazing people God puts in our path to love and support us. The photos we have from that session gifted to us are priceless treasures we’ll always value—a captured moment in time that held so many intense emotions.
For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.
It’s so tempting to only share the good stuff—the fun things I want to draw attention to, the memories I want to look back on and smile. But it’s not the whole story. I also want to be genuine and not gloss over the struggles.
This week has been a roller coaster. We had such good start with Gage’s first Miracle League game Monday night. I couldn’t resist sharing photos and telling the world about his excitement at the game. You see, when I signed Gage up a few weeks ago, I was excited but unsure what to expect. The days since registering him and the events that unfolded for Gage made me wonder if we’d even be able to make it to the first game, or any games for that matter.
What I’m learning is that it all exists together. Joy and pain, gratitude and grief. If I’m honest, I feel a bit lost and overwhelmed in the midst of it all. But I also cling to hope in God’s promises, even while nothing seems to make sense. And it all happens at once…simultaneously.
We’re in state of transition for Gage, addressing side effects, trying the find the right medication combination. It’s been a really rough few weeks. So I had my doubts about our first attempt at baseball this year. Being able to go to Monday’s game felt like a huge win. Gage’s squeals of delight, the wonderful weather, support from friends and family both near and far, were all amazing gifts from God. I posted online and many others responded and celebrated with us. But what few people know is the next day, Gage had a seizure at nap time. The fourth prolonged seizure in less than two weeks. Those lows aren’t things I want to share, but they are part of the story too.
Thursday we were feeling brave and again heartened by the gorgeous weather. We made our way as a family of four to the Springfield Cardinals game. Both boys’ excitement was on the next level! Caleb bounced around like a maniac trying to get a t-shirt sling shotted our way, and Gage burst into laughter on several occasions. Capturing those moments and savoring those memories is the best part of a night like that. None of us expected that literally moments later, I’d be frantically pushing Gage’s wheelchair into the first aid area, accompanied by cops and paramedics while we waited for another big seizure to subside.
In those moments of panic, I try to focus on the things I have to be grateful for—that the seizure did subside, that Evan and I were there together, that others were there to help, and that Caleb is brave and resilient and didn’t let the scary and unexpected turn of events ruin his night. But maybe that’s just another attempt to gloss over the worst parts. Truth be told, I hate that Gage, and all of us, had that happen. I have messy feelings of anger and sadness and guilt and injustice surrounding it. I’m not sure how to sort them all out, but here they are, right along with the opposite emotions that coexist.
So, this confession won’t be all sunshine and rainbows. It won’t be only the highlight reel, but it won’t leave out the good parts either. Sharing and celebrating the good moments matters just as much as acknowledging the hard stuff. You can’t tell the whole story without all the parts. Thanks for being along with us for all of it, the highs, lows and everything in between.
Last week we got to experience a wish come true that was over two years in the making. When I tell people about how wonderful and meaningful it was, I keep finding myself saying that I can’t even put it into words. But here’s my attempt to do just that.
Back in early 2020, we learned that Gage qualified for Make-A-Wish and began dreaming about what his wish might be. I remember the excitement and anticipation as we had our first virtual meeting with volunteers to discuss Gage’s likes and interests. After some brainstorming, we settled on the idea of a Disney cruise, which we planned to pursue just as soon as the pandemic settled down. Ha! I think we imagined travel being delayed by a few weeks or months. Obviously the coronavirus had other plans.
In the meantime, we imagined other possibilities like an attachment to make Gage’s wheelchair more all-terrain, but his pediatric sized chair ruled out that option too. Ultimately, Gage’s wish evolved into a first time adventure of adaptive skiing!
We learned from friends with an older son about this amazing sport, and thought this might be the perfect way to give it a try. Although when it became real, I was equal parts excited and terrified.
As more details came together and our travel dates drew closer, my excitement began to outweigh my fears. Not only would Gage get to ski, Caleb would have a a chance to learn for the first time too on the same trip. Make-A-Wish so generously provided everything we needed for an amazing vacation! I feel so very humbled and grateful.
Our adventures in the mountains included a horse drawn sleigh ride, roasted marshmallows fireside, sledding, and snow tubing. All this while being surrounded by the breathtaking beauty of God’s creation. Our first couple days in Colorado were packed full of fun. As the middle of the week rolled around, Caleb expressed some reservations about skiing. I reassured him it was ok to feel scared and that he can do hard things. Only now does it occur to me how much I needed my own advice mere hours later.
In anticipation of our first morning of skiing, we tried hard for an early bedtime that night. Once the boys were asleep, I lie awake for hours while fear and anxiety crept back in, seeming to outweigh my excitement. I prayed for God to grant me peace and reminded myself that even if things didn’t go perfectly, it was still ok. It was still worth trying.
The next morning, God answered my prayers with a resounding YES, and so much more! We awoke to the most beautiful day yet and perfect weather conditions, with the sun shining brightly and making all the snow sparkle. Upon checking in at the National Sports Center for the Disabled, Gage had a thorough fitting to get in his sit ski, and he was giggly and giddy through the whole process. Each little laugh melted away more of my nerves, making room for heartfelt joy. Caleb suited up and headed out with Evan and his awesome ski instructor. We spent a bit more time getting things just right for Gage, which was time well spent to set him up for success. He was then transported outside by his two incredible instructors, and from that moment on, I was just trying to keep up.
We checked in with Caleb to see what he’d been working on, then quickly headed further up the mountain for ALL the fun! I had a natural and easy confidence and trust in the two women working with Gage. I was blown away by how effortless they made it look to guide him down the slopes and even through the trees and deep powder. Although my thighs were ON FIRE, my heart was too, and I don’t think I stopped smiling for the next few hours. We reunited with Caleb’s crew for our final run, and were greeted at the bottom of the mountain by some proud grandparents!
That afternoon Evan and I alternated time with folks from Make-A-Wish to answer questions about Gage, our family, how his medical journey has impacted us, and what the wish experience meant. I feel like I talk and share a lot about things like that, yet it still caught me off guard just how cathartic the experience was. It was a good reminder that a willingness to be vulnerable is often worth it.
That evening we waited for Gage to wake up from a long nap before taking a gondola ride to the lodge at top of the mountain where we got to take in the views illuminated by a full moon, eat dinner, and listen to live music. It was a fun way to wrap up a full day.
Our final day in Colorado included another morning of skiing with Evan accompanying Gage and me joining Caleb this time. We skied in the falling snow, and Gage even got to meet a sweet Golden Retriever puppy training for work on the avalanche rescue team! It was so cool to see Caleb’s skills improve minute by minute. One of my favorite parts of the day was witnessing Caleb hold onto Gage’s handlebar for a run, while he was sandwiched between Gage’s instructor and his own, safely guiding his big brother down the slope.
I think we all used up every ounce of our energy on that final day full of adventure. We powered through a long drive home the next day (thanks, Evan!) and were so happy to be back in our own beds that night. The whole trip and experience has me overwhelmed with gratitude. I can’t say enough good things about the ski instructors who worked with both the boys and everyone involved with Make-A-Wish. Most of all, I’m amazed at the way God pours out his blessings on us and allows us to soak it all in.
Whew! The end of the year always feels like a whirl wind! I’m not quite sure how we got here, a few days away from Christmas, but I love this festive season. This is always a time of reflection for me, and I thought I’d share with you as I take a look back.
The year has been a full one for Gage. Here’s a glimpse at his 2022, by the numbers.
1 (and only 1) airplane ride. Although we flew down to Florida for vacation, our flight home was cancelled. Gage surprised us all and totally rocked the 12 hour drive home!
3 surgeries. Sigh. I hate to think of a stat like this being a normal part of our reality, but, here we are. On the bright side, even with a hospital stay during a snow storm for a procedure scheduled with very little notice, it all worked out. Gage and the rest of us have adjusted well to his life with a feeding tube, and he’s in much better place nutritionally than he was a year ago.
4 caregivers who are a vital part of “Team Gage.” We are so incredibly lucky to have the amount of help we do, and I just can’t say enough about how much it benefits Gage and our entire family. It feels like I’ve been given the space to move beyond survival mode and Gage has the freedom of more independence from me, which he totally loves.
5 lost teeth. His smile, and his whole look, have changed so much this year! A new pair of glasses adds to the transformation. He’s definitely looking more grown up these days.
Other highlights include Gage’s first time at VBS, a special morning of fishing and fun, and a shower/bathroom remodel. While that last one might sound a tad boring for an 8-year-old boy, trust me…it’s a BIG deal!
Caleb’s year was probably his fullest one yet. He took a ninja class and learned some gymnastics skills, played T-ball for the first time, graduated preschool, started kindergarten, lost his first tooth, and started playing basketball. He is smart, creative, full of spunk and LOVES to see friends as much as possible. Nearly every day starts with the question, “who are we gonna see today?”
Entertainment for the Wingo fam in 2022 ranged from Reba McEntire, Zac Brown Band, and Garth Brooks concerts to St. Louis Blues and Kansas City Chiefs games, with a sweet middle school musical and a couple church Christmas programs tucked in there too. We made trips to the beach, the creek, the farm, the lake, and more, and spent as much time as possible in our friends’ pool.
Sadly, the year also brought some heavy farewells along with it. Evan’s aunt and my grandma passed away. Saying goodbye was hard, but both experiences were reminders of the bond between family and the impact a kind soul can have on so many.
When I look back through photos from this year, it’s impossible not to feel overwhelmingly grateful. While snapshots tend to only tell part of the story, my phone’s camera roll is a bit more honest than a social media feed. Not every part is joyful, but there’s so much packed into the days, weeks, and months that have come and gone. It feels full, in the best sense of the word. All the parts are present–joy, pain, grief, gratitude, frustration, longing, and a deep and genuine appreciation for the lives we get to live.
I hope you can look back and reflect on your year for everything that it was, and see all the ways that God is good, even when life is hard.
Lots of love and light from the Wingo family to you!
The days of freedom that come with summer came to an end last week, and I’ve got two boys back in school! Three if you count Evan. Before we dive back into a busy fall season, it feels like the right time to highlight some of our summer adventures.
The break started off with a much anticipated trip to the beach! It felt so good to plan and prepare for a vacation after a few years without travel. The trip was not without its hiccups, including stormy weather, a cancelled flight home, and illness. But with some time to reflect, I can honestly say it was good for the soul. In the days immediately following our return, while the boys dealt with fevers and seizures, I’m not sure I would have described it as such.
We made a lot of memories on that trip and captured so many fun moments in photos. I will look back on those and smile, remembering the good parts, and not dwelling on the stresses and struggles that came with it. But one of the most impactful parts of that trip was a chance meeting with another parent. Toward the end of the week, we decided to have dinner out instead of cooking at the condo. While we waited on our food, we walked to the water’s edge where a kind woman offered to take a group photo. I have a hunch she really just wanted a reason to strike up a conversation with Gage, who she commented reminded her of her own son. As she doted on Gage, another suspicion began to grow, that the son she was referencing was no longer with us. She confirmed that when I asked more about him. I told her how sorry I was to which she simply and beautifully acknowledged, “so are we.” From there, she was able to share more about him and the rest of their family and reminisce about his favorite places to travel, offering recommendations for the most accessible and accommodating options.
That coincidental conversation stuck with me. The following evening taking in the beauty of the ocean from our balcony, I thought more about how every vacation, and each part of our lives, have joy and grief inseparably intertwined. I let the tears flow right along with the rolling waves. I don’t think back to that moment with feelings of sadness, or consider it a low spot during the week. Instead, I recall feeling filled up with genuine gratitude and a deep appreciation for opportunities to soak up this life with Gage.
Summer rolled on and we filled up our days with trips to pools, parks, and splash pads with some pretty amazing friends. We hosted sleepovers, celebrated birthdays, tried t-ball, and even enjoyed boat rides and bowling. It was a full and fun summer indeed.
Days before school was officially back in session, we had another adventure at the boys’ first Chiefs game! I’m told that the game Gage attended close to 9 years ago doesn’t count since he was in utero. Uncle Aaron and his family supplied tickets for the whole cousin crew (and their grown ups) and were the most generous and gracious hosts for the day, ensuring a good time was had by all. We weren’t sure about taking Gage along at first, but packed his sound blocking headphones and hoped for the best. The forecast was mild, but warm temps still took a toll on Gage’s energy level. Thank goodness for seats in the shade.
Even with the heat, and Gage’s half smiles instead of hearty giggles, he still made an impression on the woman sitting next to us. Right before half time she left her seat and returned with a bag from the pro shop. She leaned over to me and said “I know this is awkward, but I wanted to get this for your son.” She had purchased him a Chiefs t-shirt in just the right size, and a KC Wolf pennant, not knowing while she was away from her seat, Gage got to meet Mr. Wolf himself! We talked about Gage and his little brother Caleb and how great their relationship was. I told her how touched I was by her kindness and thanked her over and over.
We were lucky enough to leave that game and the day filled with family fun (and a Chiefs win!) with a little something extra–the reminder of the impact Gage has on people just by being who he is. I’m grateful for the remarkable memories that end capped our summer, and all the moments that filled it up in between.
This past summer, we had a countdown until swimming and water play was safe for Gage. He had to abstain for six weeks after surgery. Pretty much the second we could, we hit up our favorite splash pad. I was thrilled to have scored a second hand adaptive stroller with a mesh seat from Facebook for $25 (the retail price being close to $700!) that was perfect for getting wet without worrying about it.
The weekend that Gage got the all clear, we had a visit from my nieces. The splash pad was a great energy burning activity for the whole crew. Thankfully, Gage’s caretaker Madison was also able to accompany us. I would never have braved the park on my own, outnumbered by kids five to one.
After a quick picnic lunch the kids were ready to go for it. They took off with Madison wheeling Gage behind while I picked up leftover PB&Js and stray veggie straws. On a trip to the trash can, a group of ladies at the shelter house watching their grandkids play in the water stopped me to ask about our group. They confirmed their suspicions that my younger nieces were twins, and the five kids must be from more than one family. We discussed how great it was to have help from Madison. And then, my favorite part, they looked me in the eye and told me with heartfelt sincerity how blessed I was to be mom to Gage. They said this without an ounce pity in their voices. They were truly just delighted to watch his pure joy splashing in the fountains.
What an accurate assessment of our situation. Those ladies knew what they were talking about. As they sipped their cans of Pepsi from a well-stocked cooler, without a rushed pace or a million photo snaps (guilty!) they just enjoyed their leisurely afternoon and shared their good spirit and perspective with me too. They didn’t say things like “maybe next summer he’ll be walking on his own through the fountains!” Or “May I ask what’s wrong with him?” Or “God never gives us more than we can handle.” They just observed the good things we have and spoke life and love to it, with no judgement or sympathy whatsoever. May these women be an example to all of us. And may we all have at least one thing in our lives that brings as much joy as a trip to the splash pad does for Gage!
For three hours this morning, I sat on a patio overlooking a picturesque trail, with a gentle breeze blowing through the surrounding trees, sipping a latte that was not only delicious but also a work of art, in nearly 70-degree weather in mid-December. If you’re feeling jealous, you should. It was wonderful, and I haven’t even mentioned the best part. I was accompanied by two amazing women and one adorable baby. The women were generous with their compassion and empathy and the baby wasn’t stingy with smiles or snuggles. While my coffee stayed perfectly contained in my cozy mug, my proverbial cup runneth over.
Today’s mom get together was filled with both tears and laughter, and plenty of authentic connection. It came together last minute, which seems like the only way plans actually happen these days. And it was just what my soul needed—a gift from God, an incredible kindness.
As I drove away, I couldn’t help but reflect with gratitude on the time spent. I was reminded of my longing for those connections when Gage was younger. The void I felt, the present sadness and yearning for someone to relate to.
Today’s meeting was only my second ever encounter with one of the women in attendance. I informed her that we’re friends now, whether she likes it or not, and I’ll be using her shortened nickname since we’re “close.” Evan has told me before that I come on too strong. He might be on to something. But I have a hunch that this brave and resilient mom of four won’t be scared off easily. Throughout our conversation, she classified some of what she shared as complaining, but on the receiving end of it, none of it felt like a complaint. It all just felt real and true. I was so grateful for the chance to listen. To feel less alone and more connected.
Before we had even ordered drinks or pastries, I was confessing my tears shed in the van ride there, prompted by a Bob Goff podcast. He pointed out that if we only share things once we have a happy ending to celebrate, we miss the opportunities to truly encourage others. I felt like he was talking to me. My confession wasn’t met with judgement or criticism. In that moment and for the rest of our time together, I felt safe. I hope my new friend shared the same sentiment.
Quality time with friends can seem so hard to come by. But I’m so glad we had the chance today to do what we did…make space. We made space in our schedules and made space in our individual chaos to come together and share space. That space felt sacred. I recently read this line from Amy Sieffert about hospitality, and it hit home. “When space has been made for me, I have known healing, kindness, laughter, freedom, God.” I felt all those things today, and I’m so grateful.
Many times this year I’ve felt numb. Like I can’t feel anything. Sitting in the back of an ambulance holding Gage’s hand as we rode to the ER, I expected to feel anything from panic to fear to hysteria. But instead, I seemed to be void of any feelings at all as I calmly explained to the paramedics Gage had had an operation 4 days earlier to place a VNS device, and no, it wasn’t activated yet, and actually the surgery was in Kansas City at Children’s Mercy, not in Springfield at Mercy Hospital.
I suppose it’s a scenario I played out in my mind over and over, even on a subconscious level, calling 911 and taking that ambulance ride. Perhaps that’s why I felt like there was an “appropriate” way to behave or feel during the event when it did happen. I consider myself lucky that we made it nearly 7 years before we had to make that first call due to a seizure that wouldn’t stop, even after two doses of rescue medication. I also feel lucky that surgery this summer was the first time Gage underwent an operation. But somehow it seems like things have been in fast forward ever since, coming at us in rapid fire succession and feeling all the more overwhelming because of it.
In addition to Gage’s first surgery, 911 call and ER visit, this year marked his first scary seizure in a VERY public setting. What was meant to be a time of celebration and fun turned into my fears being realized in an instant…fears I’ve harbored since Gage’s first seizure nearly five years ago. And still, I felt oddly numb as I walked through the motions as things unfolded that afternoon.
I suppose the reality is that nothing can truly prepare us for the things we have to face, and we can’t predict how we’ll respond to trauma. Who’s to say what’s the right way to respond, react or feel anyway? What I do know to be true, and I’ve seen evidenced over and over again, is that we’re not alone.
The “appropriate response” I should come to expect is from the people we’re surrounded by, who keep showing up and caring about us and loving us and Gage though it all. Grandparents driving to our house in middle of the night at a moment’s notice. Friends making post-surgery food deliveries. A fellow medical mom timing a seizure and making detailed observations when I couldn’t even come up with an answer to the question “Hannah, what do you need?” And so. many. others. just picking up the pieces and tying up the loose ends without missing a beat.
Reflecting on this year as it comes to a close, not all of the memories will be happy ones. I can’t erase the traumatic moments from my brain, even if I want to. But I’ll also remember the good things that came along with the hard. All the people who keep showing up, who feel like the hands and feet of Jesus to me. The ones loving us in practical and tangible ways. These acts of thoughtfulness, of kindness, are how the light gets in to my dark places. Through them, God continues to stretch and mold me. It leaves my heart more open, less hardened. I don’t have to stay numb — void of emotions — when I make space for gratitude and remember I’m not alone. God never leaves me.
Recently, I had the chance to interview a friend for a work project. This week, KSMU Radio aired a series of StoryCorps-style interviews ahead of The National Day of Listening. When the idea was presented to staff, I knew right away who I wanted to talk with, because we had just spent three hours catching up in a coffee shop that morning . My friend Katelyn has been a lifeline to me over the last four years, and I’ve grown to value her so much. Like many of the treasured friends I now have, we were introduced because of Gage.
My role at work has always been very much behind the scenes (my strong preference) and is even moreso in a part-time capacity. The idea of interviewing and recording a conversation with someone made me nervous, but I still felt led to do it and Katelyn was agreeable, even just days away from delivering her third baby!
What I quickly learned was how tricky it was for the two of us to keep our conversation short enough for a radio-friendly format. We ended up with a lot more audio than what made it on the air. You can listen to the shortened on-air version here. But if you’ve got the time and want to hear more of Katelyn’s God-given wisdom, I’ve included a longer version here.
Here are a few of the highlights from Katelyn’s insights for me.
Sometimes the best way to support someone enduring pain is just being present for them…sitting through the hard parts…and not trying to convince them to feel any differently than they are feeling.
Our children have inherent, God-given worth and value, regardless of what society defines as “normal.”
It’s a tricky balance to parenting multiple children when their needs vary in intensity, but not in importance.
When you have a genuine connection with someone, you don’t have to “put a bow on it” and hide your messier parts.
God provides at every turn, and even delights us with gifts He prepared for us before we ever knew we would need them.
And, because they are too adorable not to share, here are some photos of our kiddos.
Gage and Landry are pretty crazy about each other. Quincy and Caleb are two peas in a pod…and both really like snacks.Landry may have an ornery streak, but definitely has plenty of love to share.
Keep up with Katelyn’s family and their journey at ForLandry.com.
