Month: December 2021

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!

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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.