A Special Birthday
A few years back I became friends with one of the most beautiful souls I have ever had the honor to meet. I truly believe our paths crossed for a singular purpose: to connect over her son Matthew's journey. I've written about our special friendship. Today I am thrilled to introduce a moving piece of writing by my friend, Kristin Theobald. My heart is full of gratitude that Kristin is my first guest essayist. Today is Mathew's birthday.
One Foot In Front of the Other by Kristin Theobald
Mike and I had a four-day long date in Denver last month. Like all good parents, we saw the opportunity of a dear friend’s wedding and ran with it. We are lucky that our kids have grandparents willing to indulge that type of adventure.
We talked, we laughed, we saw old friends, we drank, we hiked and hiked and hiked, and we danced some too. We experienced the breath-taking glory of Rocky Mountain National Forest. I stared from the top of mountain after mountain, at thundering waterfalls, in sun, snow, and hail, four climates in one walk, with awe, admiration, and wonder. Along with the array of emotions brought on by the magnitude of the presence of something so much bigger than myself re-emerged the crushing understanding that the God who created this vast glory, the architect of all beauty, didn’t build Matthew’s internal organs in a way compatible with the life I dreamed of for him and for us.
My sweet partner is in his element here. This man was made to hike mountains and has a deeper appreciation for nature than one might think humanly possible. And on long, arduous hikes, away from technology and rules, it is very easy to remember that we are both very funny and rather strong. After hiking 15 miles, as I was traipsing down what I thought was the final path, Mike said, “What if I told you we had to do it all over again?” Without a moment of hesitation I said, “Of course we could. It’s just a matter of putting one foot in front of the other.”
As soon as the words came out of my mouth, I realized this is who I have become. The line in the sand of my life is September 18, 2014. My whole being straddles the line of before and after. Surviving the after is literally putting one foot in front of the other, regardless of my internal monologue.
Most days, I am quietly re-playing moment after moment of Matthew’s life at CHMC. Replogle, Vent, G-tube, TE fistula, Craniectomy, ECMO. May you never know what these words mean. Some days, I am paralyzed by the deafening voice in my head screaming at God that He got it wrong. Tonight, I am seeing 3 a.m. because the sheer panic of living life without him has stolen my breath and brought me to my knees.
But the truth is, the after has to be more than that. God and I are a work in progress.
September 18. Bed-rest and contractions followed by the epic gush that few women will know of water grossly breaking. The rush to the hospital, the ambulance to Children’s, the abruption which aptly describes not only our lives on the edge but the way we crossed the line forward into the beginning of the after. But most of all, the “sqwauk”. The very unexpected, against all odds moment Matthew “sqwauked” for an operating suite of 30 of Children’s finest nurses and surgeons. The sqwauk that let me know that we would both live to see another day.
The rest of September is a blur, but if you have the time I can describe for you every moment, every difficult conversation, every rounds, every ounce of breast milk pumped and delivered by G-tube fortified with preemie “jet-fuel.” More medical drama than the average medical student will witness in a lifetime. But we made it to October and November, our sweet spot.
Matthew spent October and November growing and getting to be a baby. Between Enterovirus and flu season, the CHMC restrictions meant that many of the people I love in this world never had the chance to hold him or even meet him in person. We are lucky that they carry him in their hearts although they were banned from holding him in their arms. I would literally cut off my arm to go back to those days.
He was so smart and so darling and so fragile. I believed that his visual tracking skills of his obnoxiously large crib mobile were beyond compare! Like his siblings, he was strong-willed, but uniquely Matthew, he was much more sensitive. I wondered what it would be like to bring him home to the chaos of our crazy house because he loved the quiet and the calm.
My dream life centers upon the nights there were nurses willing to look the other way and we **gasp** snuck all six of us, four pajamm-ied children, into his NICU room for movie nights. The hand sanitizer I would bathe the older kids in to make them “safe” is still used in the entire Children’s system and the smell brings me to hysteria these days. James and Abby, then six and four, could not have been more proud. It is hard to explain though, what it means to have a six-year-old who can adeptly interpret a pulse-ox monitor. If I could return to any moment in my previous life, you’d find me in mid-November, in a rocking recliner with Matthew snuggled into my chest. Yes, we were dragging a replogle and a nasal cannula, yes, we were accommodating a G-tube, yes, we were 10 miles from Madeira, but we were HOME.
Matthew had big, gorgeous, ancient eyes. He had the deep, wise, eyes of my grandfather, and if I am honest, I always knew his eyes and his soul were very old for this world. He gave Mike and I the gift of his first smile at the same time, which with Mike’s job and three kids at home, for us to both be present to witness was amazing and perfect. He gave us hope. The kind of hope that buys bunk beds and makes plans. The kind of optimism that we were going places. That HOME could become one location.
December meant surgeries, but I believed in Matthew, and his penchant for beating the odds. Our Christmas gift was to be one last surgery and our ticket home. December 16, after a 9 hour surgery, Dr. Lim brought us in and told us the surgery was successful, his esophagus was connected. It was long but had gone well. I was able to breathe for the first time in 3 months.
The following days and weeks are the works of nightmares. Ultimately, his one lung was never able to recover. Matthew Glasgow Theobald died from complications of a pulmonary hemorrhage on January 14, 2015. He had left us.
So here we are three years later. One foot in front of the other. Looking for meaning, but mostly just surviving. With a side of awe and beauty and wonder.
Matthew’s life was a gift. Parenting a child in heaven makes me a different parent to the three I have at home. Every parent cherishes their child, but having Matthew has forever altered our appreciation of tiny moments and good health. One foot in front of the other takes us on this journey back to him. Being witness to his life shapes our understanding of the universe and our need to connect with those we love. The road is long, and I struggle every day to understand how to honor Matthew in our life along the way. But I am pretty sure the love of our people will guide us along the path and bring us all home.