The middle of the epilepsy storm

I will never forget the first day my husband and I heard the word seizure in connection with our daughter, Christina. We weren’t prepared, but what was worse, the medical community where we lived wasn’t either. Relentless seizures—more than one hundred a day—blew in like a whirlwind. The storm seemed to form out of nowhere. None of us saw this coming, doctors included. The painful truth was warning sirens had been blaring, but we failed to notice.

Desperate times require desperate measures. During the middle of that storm, Larry and I realized the truth in that statement. Below is the first of a series of excerpts from Good Morning, Beautiful, which chronicles our tumultuous journey :


The 727 banked, routing it northbound for Minneapolis. Through the window the wing lowered as stars hung in the clear night sky against the darkness. Some sparkled as a precious gem does when hit by light. Relief at the cloudless sky, rendering a smooth flight, didn’t come as it should. An inner storm was raging, bringing with it gusts of fear and panic. A tear slipped out from already exhausted eyes and began to run down my cheek. Glancing around, the passengers were reading or talking to the persons next to them. Not wanting anyone to notice, I nonchalantly brushed the tear away. Long, sleepless nights in the hospital left my eyes burning and rimmed in red. As I slid my finger into the hand of my tiny daughter, she moved hers slightly to accommodate. Looking more like an infant than the toddler she was supposed to be, below fine blonde curls, her face was thin and pale. Her sea blue eyes were open but showing no sign of what they were fixed on. She was still and quiet. Capped IVs ran into each arm and bruises lingered near them, as well as areas of unsuccessful attempts at placements and blood draws. Tiny veins were not meant for this.
 When the tall brunette flight attendant who had seated us before anyone boarded came by, I knew she was being kind by offering food. “Can your baby have anything?”


Holding back emotion, I thanked her and said no. It wasn’t just the special diet we were feeding Christina or the relentless seizures. Truth is, she had not eaten nor drunk anything on her own for weeks. First, she wouldn’t finish her meal. She gagged when my husband or I tried to force drops of formula into her


mouth with a syringe. The nurses also tried to feed her this way, without success. Prescribed much later than it should have, the feeding tube running into her nose held in place with tape was keeping her alive. The tube ran into a portable pump filled with her “special” formula, equipped to sling over my shoulder for transporting her. For now, it sat at the floor near my feet.


Daunting thoughts crept through my mind. Could there be a genetic disorder or cancer that has been missed? Why is this happening to us? God, this must be a cruel joke, after all we went through to have children. How could this be?


Closing my eyes, I held them shut in hopes this was just a bad dream. When they opened, flight attendants were picking up cups, and passengers chatted in the distance. It wasn’t a nightmare, but a blustery wicked storm, swirling life and everything we had known to be normal out of control. The term “failure to thrive” came more than once from the nurses who attended to her at the hospital where we fought to discharge her. Already hardened by previous misinformation, my husband Larry and I were not sure what to think of this latest assumption. Our hope was that the hospital in Rochester would be able to help our daughter, but it would be a while before arriving there. Once on the ground, there was still a two hour drive to make. Looking at my watch, I realized we’d be lucky to make it to admitting by midnight.