Little did we know, New Year's 2020 was going to usher in a new life. Our life is divided into a distinct before and after. Before Henry’s first seizure and after Henry’s first seizure. That division of time came about in one ordinary moment that was robbed of its “ordinary” and changed the course of our lives forever.
Jan 4,2020 was so ordinary that I can’t even remember how we spent the day. I do remember that we were settling in for the evening. Henry was 10 months old and snuggled up in his boppy. Steve asked me, “what’s going on with Henry’s arm?” His right arm was extended straight out like Superman. I told Steve, “He’s fine, he’s just stretching.” We continued watching him and his arm started to jerk. Then his entire right side started to jerk. I grabbed my phone and took a video of the involuntary movement. I wanted a doctor to see what we were seeing.
Up to this point, the only seizures I had seen were Grand Mals. Steve had never seen a seizure, so we really didn’t know what was happening. (Henry was having a focal seizure). The involuntary activity stopped, but we bundled him up and drove him to the hospital. He was completely back to his baseline when we arrived. The emergency room does what emergency rooms do…they talked with us about his history, observed his vitals for a couple of hours, and then a doctor told us she was discharging him. (I thought we had been waiting for a specialist.) I knew everyone in the ER was thinking we were first time parents who were overreacting, so I asked the doctor if she would please hold off on discharging us and watch the video I had taken of Henry’s involuntary activity. I saw her face change as she viewed the video. She said, “This is concerning. Let’s get somebody from neuro down here.” A neurologist spoke with us, watched the video, and ordered an EEG. Henry was suited up in his headgear and he was monitored most of that night. The EEG results showed that Henry did have seizure activity. We left the hospital with an anticonvulsant, a rescue medicine, and a care plan. What nobody knew that night, was that Henry has a rare form of epilepsy that responds particularly badly to the anticonvulsant we were sent home with. We went through all of his rescue medication within a week’s time. Did you know a typical seizure lasts between 30 seconds and 2 minutes? I didn’t know that! Seizures also usually stop on their own. Henrys don’t! His seizures were all 7 minutes, 9 minutes, 15 + minutes, and they required multiple doses of rescue medicine. It was horrific, and it got worse. There is nothing I would love more than to tell you that this story ends with my 6-year-old being completely healthy. We all want happy endings, but the truth is Henry regressed, declined, and fought to stay alive. Another hard truth is that the lack of a happy ending does not mean that God is absent. I refuse to believe that God’s presence only exists in happy endings.
God was with the firefighter who lifted my 67-pound son off the floor and placed him on my lap. God was with the EMT who spent an hour by Henry’s side until he felt certain that Henry was stable. God is with the NICU nurses who still follow, love, and support Henry. God is in the worship music and prayers that bounce off the walls of our hospital rooms. Maybe one day God will show Steve and I why Henry’s story couldn’t have been different. In the meantime, even when I’m angry and fighting the impulse to shake my fists at God, I know He’s good. I have faith in His plan for us, and I know that He’s in the trenches holding us.
Add comment
Comments