I sat in my office trying to focus on my work instead of the five seizures my three-year-old son had already suffered that day.
As I tried to focus my eyes on my computer screen through the tears that seemed to sit permanently on my eyes, I heard him walk into the room and ask if he could use the vacuum (more of a toy at that age than a chore). At the moment I told him he could, he looked at me with a vacant, glazed over expression that froze his features into place while the rest of his body stiffened up as well. Falling to the ground before I could reach him, he began to convulse-violently at first and then more rhythmically as his breathing slowed considerably and he turned a frightening shade of blue. Having been through other episodes, we knew to turn him on his side to avoid him biting his tongue, and began soothing him while he seized by talking to him in soothing tones as we softly caressed his arms and legs. Previous doctors (yes, plural doctors) told us to time his seizures and make sure they did not exceed five minutes, and if they did, to bring him to the emergency room again-somewhat of a feat since we lived over an hour from the nearest hospital. Nevertheless, I had had enough of watching our son suffer, so we scooped him up and headed back to the hospital for the seventh time in 3 months.
Upon reaching the hospital, the real trauma began.
Unbeknownst to us at the time, the nurse that weighed him failed to do the proper conversions and wrote down the wrong weight for our son on his chart. As the doctor examined our son, he began to seize again. The seizure was so intense that our son went into respiratory arrest and the doctor pushed a coded-button on the wall that brought a team of doctors rushing into the room. At this point, I was standing outside of the room watching my husband straddle our son’s body on top of the exam table while he performed CPR. The doctors shouted instructions to one another while administering an injection of anti-seizure medication. Meanwhile, in my mind, I was watching my son die which kicked my blood pressure through the roof causing my nose to bleed so badly that two nurses were assigned to me in an attempt to calm me down and clean me up.
Still, to this day, I do not know how I got outside of the room, or why the doctors failed to double-check the dosage of the injection before giving it to a child. Once our son was revived and his breathing regulated, we were informed that he would be in a medically-induced coma for a few hours to help his brain recover from the damaged synapses. We were admitted to the hospital for the night.
As any parent of a sick child knows, sleep is a rarity in cases such as these so when the doctor who came the next morning flippantly responded to my question about how long our son would be in a coma with, “He may never come out of it,” my husband had to hold me back from physically attacking him. In sum, our son laid in a coma for three days because of an overdose of the anti-seizure medication (based on his inaccurate weight). When he finally awoke, he had trouble talking and walking so, at three years old, we taught him all over again.
After two more years of multiple doctors and emergency room visits, and four different medicines, our son thankfully outgrew his childhood epilepsy.
He is now 17 years old and getting ready to graduate high school with honors, and has been awarded generous college scholarships based on academic achievement. The doctors told us there is no explanation for childhood epilepsy and he is one of the lucky ones who outgrew it. We had a hard time qualifying the word “lucky” for years afterward as our son struggled with some hyperactivity and having a slight accent as residual effects of his episodes.
There is absolutely no way I could have endured these experiences without my faith in God. I had to rely on his strength to pull me through and help me be present for my son as he fought the battle. Through prayer, I placed all of my fears and worries at his feet at the end of each day, asking for restorative sleep and strength to endure the next day and what it brought. There were times I wondered if God heard my cries, and, more oft than not, there were times I feared I would not be able to endure what came our way, but the sense of supernatural peace that my faith provided was the perfect amount of armor and grace I needed to face the challenge.
If our son could fight as hard as he did to come back to us, then the least I could do was trust in God to pull us through as a family.
As one doctor said during an MRI scan of our son’s brain, a year after the day of six grand-mal seizures and a three-day coma, “I have never seen divine anesthesia before. This is a first for me.” He was referring to the fact that he needed our son to lay perfectly still (an impossible feat for a toddler) for the MRI scan. He had warned that he would need to administer a sedative to help our son relax and lay still; however, the possible side effects could include respiratory arrest. Given our recent experience with that, we chose faith instead, and we prayed over him until he fell into a deep sleep which allowed the doctor to perform the test flawlessly. It only took three minutes for him to fall asleep and he immediately awoke upon the completion of the test.
As a pragmatist, it is difficult to explain many of the things that happened during and after our son’s journey through childhood epilepsy.
But, as a believer, I am blessed with not having to explain my faith or how it got me through it alongside him. I just gave it to God, and he did what I could not-including helping me trust in him when my faith waned. Isn’t that what faith is all about? Believing in something/someone greater and more powerful than yourself? For me, it was giving up control and pledging to listen as much as I plead. It was a tough thing for me to do, but it returned blessings I could not have imagined. As fate would have it, our son would have childhood epilepsy for a few years. As faith would have it, we would come out of it stronger, closer, and more faithful than ever.
Author’s note: The title Grand Mal/Gran Fe is a play on words. The type of seizures he had were grand mal seizures. Gran fe means great faith in Spanish. I chose Gran Fe in the title because we speak Spanish in our home as well as Yup’ik and English. We were living in New Mexico when he had his seizures.