John thought Zane’s breathing didn’t sound right on the baby monitor. We rarely check when he is napping, but this time, for whatever reason, he did. My 2-year-old son was staring, unblinking, with vomit all over him. John summoned me and we got him out of his crib. I gave him a bath; he couldn’t even hold himself up. A few minutes later, his body started convulsing. I yelled to John, “Zane is having a seizure, we need to get to the hospital NOW!”
We threw on shoes and buckled Gavin, our 3-year-old, into his car seat. I held Zane. The whole way to the hospital, I drove from the back seat, yelling directions my husband already knew, and sobbing. As soon as John pulled up, I ran into the emergency room with Zane. The staff were amazing: fast, efficient, caring. Yet nothing they did could stop Zane’s seizure. John and I spent three excruciating hours watching, while Zane’s seizures continued to progress, taking over more and more of his body. It is the only time I have seen my husband weep. If only I could take this on myself, I thought, please God–spare Zane.
Finally, he was sedated and placed on a breathing machine. They conducted multiple tests including an MRI, CT scan and spinal tap. The doctor told us Zane needed a life-flight to Spokane. We decided that I would fly with Zane (nobody could have stopped me from getting on that plane) and John would follow, driving three hours to Spokane with Gavin and my mom. They shut the ambulance doors and I watched my husband grow smaller through the window as we sped away. I felt utterly alone.
The flight was loud and I was scrunched into the back of a small plane, wondering, amidst all of this chaos, how we ended up here. Spokane had lots of snow and the ambulance ride seemed to take forever. We went to the neonatal ICU at Sacred Heart Hospital. Zane had additional tests including another MRI and lots of X-rays. He had a bad sinus infection and inhaled his own vomit, causing pneumonia. That night, I stayed by his bed. I couldn’t take my eyes off of him. If I lost this focus, I was afraid my heart would splinter into a million small pieces.
I was so relieved to see my family later that night. I no longer had to carry this burden alone. We looked in on Zane. The poor little guy had so many needles, a catheter, a tube in his stomach, and had to be intubated for the next day and a half. Altogether, he had some twenty different medications and was completely sedated.
The next morning, my mom, Gavin and I left the hospital to find some basic necessities. We were barely dressed and totally unprepared for the previous day’s events. We walked through the store grieving and bewildered. Checkout lines were considerably long. Slowly, it dawned on us—it was the day after Thanksgiving and people were holiday shopping.
I stood in line, feeling like I was from another planet. I thought to myself, these people have no idea what is going on in my world. They don’t know Zane, or what has happened to my precious child. In this moment, I recognized the danger of making assumptions about other people. I realized how important it is to strive for compassion when interacting with others, to use gentleness and kindness as a guide. The everyday circumstances of people’s lives simply aren’t written on their sleeves.
When Zane started to come out of sedation, he was crawling out of his skin. Two nurses told us they had never seen such a bad reaction. Our greatest concern was brain damage. Zane’s first words, “Papa?” filled us all with joy and relief. Zane started to talk and eventually walk–albeit like a drunken sailor. He was moved out of ICU into the children’s wing, and after a total of five days and one more MRI, we went home.
That was the beginning. Zane did suffer brain damage from that initial seizure—my perfect, beautiful, little boy. Since then, he has also been diagnosed with epilepsy, autism and sensory processing disorder. The sensory processing disorder makes it difficult to go out to events with lots of noise, light or people. It also makes Zane particularly physical, including episodes of biting and hitting, which is challenging for the whole family. Our home is rarely a relaxing place.
And yet, I am a lucky woman. My baby survived. I still have him with me. I can still hold him, touch him, breathe him in, and watch him grow. He is walking and talking. I can’t imagine the pain of actually losing a child. How do I sort out these feelings about my children’s mortality? We are all so fragile, and so resilient.
Zane is one of the most affectionate, beautiful people I know, making for a strange dichotomy with his more physical, sometimes unruly, self. He gives the best hugs. He is obsessed with worms. Every morning, while still in pajamas, we put on our shoes and jackets and search the backyard for worms. “I found a big fat one!” Zane announces happily and gives it a kiss. He can literally do this for hours each day. I thought he would forget about worms over the long Montana winter, but in the spring, he was at it again. He often asks people, “Do you know worms?” This is very important to him.
In the beginning, I went frantically from appointment to appointment with Zane. We visited all kinds of professionals including medical doctors, specialists and many types of alternative healers. These days, we still search for answers, but at a slower pace that works better for Zane. We also continually deal with local and national government agencies, non-profit agencies and our insurance company. It takes enough time that I refer to it, jokingly, as my second job.
Last summer, we were at the farmers’ market—a stretch for Zane on a good day. This day was not so good and Zane had an inconsolable meltdown. As I held him in the grass, an older woman working a nearby booth walked closer and put her finger to her lips, shushing him. “Are you telling my son to be quiet?” I asked. “Yes,” she said, putting her finger to her lips again, “Shhhhhh!” “If only it were that simple,” I told her, resenting her lack of compassion. “Obviously, he has the advantage,” she told me. The world, through my eyes, became red with fury. I wanted to grab and admonish her. Instead, I said, “You have no idea what you are talking about, lady,” and walked away, carrying my crying child.
I don’t think I could have made it through these last two years without support. Family, friends, loved ones from long ago, and people we have never even met have reached out to us in numerous, creative and generous ways. I am humbled. I am speechless. I am filled with awe and appreciation. How do I express the gratitude I feel? It has been hard to accept it all. It is a big lesson, this needing and receiving. “Thank you” just doesn’t cover it. It feels more like, “you changed my life” or “you give me hope.” I don’t know how we would have done it alone. No one should.
This essay was originally published in Mamalode's print magazine themed Village.