If I had a giant miraculous eraser, there are moments of Henry’s life that I would wipe out of existence. This post is about 45 minutes that I’d love to obliterate with said eraser. I hate revisiting this part of his story. However, it’s my responsibility to speak on Henry’s behalf and my goal to spread awareness, so I need to share the struggles alongside the successes.
It was December 22, 2020. Henry developed a 101.9 fever which is dangerous for an epileptic, but deadly for an intractable epileptic. He had a 12 minute seizure. Rescue meds brought him out of it. Within 2 hours he was seizing again. This time, rescue meds were not bringing him out of the seizure. We called paramedics. They loaded Henry & me into the ambulance, and we headed to the hospital. The EMTs couldn’t get the seizing to stop, so there wasn’t enough time to make it to Henry’s children’s hospital. The ambulance had to reroute to the nearest hospital. This seizure lasted for 33 minutes. Our beautiful 21-month-old fought through 45 minutes of seizure activity in one day. Once Henry was stabilized at the first hospital, we were taken by a 2nd ambulance to his children’s hospital. At the 2nd hospital, his meds were adjusted, tests were run, and he was monitored. The results...he had a cold/fever. A common cold almost killed him.
Both of the hospitals had covid protocols in place. This was a huge protection for medically fragile children, like Henry. One of the protocols was that only one parent was allowed to stay with Henry. Steve followed both of the ambulances and spent the night in the hospital’s parking garage to be close to us. I was alone in the hospital with a medically fragile 1 year old. I comforted Henry through blood draws, IV ports, and EEG headgear. While I was comforting Henry, I did the best I could to thoroughly share his medical history with the on call/teaching docs. I asked every question that could potentially help us improve Henry’s quality of life. I documented EVERYTHING. There was no diagnosis. No answers. Just a common cold with a fever.
I spent a lot of time in the hospital, alone with Henry, during the first two years of his life. He was admitted to the hospital 13 times in 12 months. My knee jerk reaction to heartache in the past, especially during our challenges with infertility, had been to freeze God out of my life…no prayer, no bible study, no church. As a result, I was depressed, angry, and dug my heels into that bitterness. The grief of infertility was only intensified by cutting off my relationship with the Prince of Peace. That familiar resentment began to creep back into my spirit as Henry’s syndrome progressed and we lived in one of two states-hypervigilance or emergency response. I had a choice to make, and I vividly remember cradling Henry in the hospital when I weighed my options. I could yield to my nature, embrace the anger, and kick God out of my life. Or I could submit to God, leave my anger at His feet, and allow the spirit to guide me through this bad day. I had praised God through every good day of Henry’s first year, how genuine was my love for Him if I couldn’t trust Him with the hard days? When Steve & I have a disagreement, I don’t pack up, move out, and file for a divorce over a disagreement. I love him on the good days and the lousy days. We work through tough moments together and this has strengthened our marriage. Why do I respond differently in my relationship with the heavenly father? So, in the middle of the night, in a hospital room, holding the little boy we had almost lost, I prayed. Praying was simultaneously the only thing I could do and the most powerful thing I could do. As I prayed through hospital stays with Henry, I decided, as horrifying as his undiagnosed medical syndrome was, I didn’t want to carry any of it, even the anger of it, on my own. God’s big enough to shoulder my fear. His grace is sufficient for my fury, even when it’s misdirected at Him.
Three days after this seizure, Henry was discharged from the hospital. I remember Steve desperately grabbing him out of my arms because he hadn’t seen or held him since he was carried off in an ambulance. Henry looked like a limp little rag doll in his arms. He had been sleeping in my arms every moment that a doctor wasn’t examining him or running tests on him.
Henry’s exhaustion made sense because he had endured such a long seizure, he had a cold, and he was coming off a lot of rescue medication. I thought this was normal for Henry, but through the fog of fatigue and trauma I missed something. This was much more than being exhausted or a quiet recovery. Henry had stopped talking. He no longer said mom, dad, hi, bye, and Kee (Kee was what he called Keebler, our malteepoo). After plenty of rest, he wasn’t bouncing back. He lost his words. He was not sitting up independently. He could no longer walk. He gradually began to sit independently again. He remembered that he used to be able to walk and was determined to walk again, but he just couldn’t. I’m so thankful he fought to regain that ability, but it was heart wrenching watching him struggle. He would stand up and fall down all day. This turned into standing up, taking a step and falling. This progressed to taking two steps and falling. Eventually he could make his way to the mailbox. The mailbox is about 20 feet in front of our home so every day his chore was to walk to the mailbox with me and get our mail. (Mostly medical bills) I won’t lie and say the following years were easy. In fact, they were nightmarish, but survivable with faith. Trusting Jesus didn’t eliminate the struggle, but it invited Him to meet us inside of it. He was there, protecting us, even during the toughest of moments. He protected our marriage. The divorce rate in families with children who have special needs/chronic illness is about 80% (psychology today). This year we celebrated our 23rd anniversary. He protected us through provision. We were accepted into the Katie Beckett program. Our family service worker had never seen a family get accepted into the program as quickly as ours. (Henry had an extensively documented history.) The Heavenly Father protected us in Henry’s numbers. Henry was having over 9,000 seizures a month. Today, he is having nocturnal myoclonic seizures and averaging one grand mal every 6 months. He’s protected us through science, technology, medication, therapies, and medical advances. He’s protected us in big ways and a million small ways. Some would say, “science protected you.” Others might say, “intractable epilepsy doesn’t sound like protection.” I would agree with both. Yes, science has protected us. I also believe God is the author of science. I would agree that intractable epilepsy doesn’t feel like protection, but I’ve chosen to trust Jesus based on his character and not on our circumstances. In some instances, trusting Jesus is not simply a choice, but a visceral response. When Henry is convulsing, gasping for breath, and rescue meds don’t work, everything in me is crying out for our savior. I don’t believe this is unique to me. In a catastrophe, like a car accident, the name “God” is the first word screamed from the lips of the most adamant atheist. When we’re in situations that leave us powerless, we call out to The Almighty. Our entire being calls out the name of The One Who Saves. If I had the ability, I would still delete those 45 minutes from Henry’s life, but I would never edit out the way that traumatic event has strengthened my trust and dependence on the Heavenly Father.
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