In the book that Mike Leach and I compiled, “I Like Being Married,” we devoted a chapter to “In Good Times and Bad.” My favorite story in that section is about a couple, Evander And Fotini Lomke, caring for their little girl with epilepsy. While I hate to liken their hardship to dealing with mental illness–because I have no idea what it’s like to be a constant caregiver to someone else–I am somehow encouraged and impassioned by their story to love my way through my mood disorder, and to let it not deter me from living in any way.
Our world.
Our bright, curly haired three-and-a-half-year-old Elizabeth closed her eyes and slumped. It was like the sound of a silent crash. For us, an eternity passed in the span of twenty minutes. Little did we know how much our lives could change over lunch.
It happened between pediatric appointments, in a hospital cafeteria — no shortage of doctors there. One would eventually tell us that Elizabeth had a seizure. “She may have epilepsy. It’s a disorder not all that unusual in children. It’s often outgrown. But medication will have to be taken as a precaution. If she has no other seizures after a certain length of time, the medication can be eliminated.”
What? We hardly knew what epilepsy was. It typically runs in families. Neither of us had any such history.
The medication turned out to be a disaster of side effects and worsening conditions. Others were tried. Combinations. Injectable steroids. Something called the ketogenic diet, a seemingly grotesque regimen of high-fat consumption. We felt as if we had gone through the looking-glass. But if it would help….Unfortunately, the seizures became much more intense and frequent. Treatments made things worse.
Specialists of every sort were consulted. A degenerative disease was suspected, then ruled out. AIDS was a possibility, though we couldn’t imagine how. The testing was often painful, including a bone-marrow procedure and biopsies. The doctors began looking for diseases too rare and hideous to name.
Finally, a week before Christmas, a diagnosis was made by the hospital’s chief of pediatric neurology: Lennox-Gastaut syndrome, one of the most brutal forms of epilepsy. Even neurologists don’t come across it very often. We learned there are 50,000 of these cases — Is that in the United States or the world? Did it matter?
Elizabeth’s IQ dropped 90 points: profound retardation as a result of countless petit-mal and grand-mal seizures. Now four-years old, she could neither walk nor talk anymore. Because of the seizures, Elizabeth’s sleep was often by fits and starts. How exhausted we all were. Nothing could be counted on now. Oh, we did know one thing: we wouldn’t need that college fund anymore.
What had Elizabeth done to deserve this fate? What would become of our little family? Could this be a cross too heavy to be ours?
As the years passed, the few ups and the many downs of this strange, disabling condition kept us on our toes. The seizures made it difficult for Elizabeth to do much of anything. T he harder she tried to concentrate when we read to her, the more seizures she had. Some caused her to cry and scream. One unusual seizure made her to shut her eyes and not open them for the longest time. And once in a while a seizure caused her to stop breathing and turn blue, which required oxygen immediately. Until better forms of treatment came along, we continued to be regulars at the ER. A bag was always packed in anticipation. One Thanksgiving was spent in the children’s ward. Another year, it was Christmas. Some friends, especially those with healthier small children, contacted us less and less often. In their good times, we learned, people don’t want to be reminded of the ever-present possibility of the bad.
Before Elizabeth was born, a good friend told us that children in heaven choose their parents. We wonder. We were married for ten years when Elizabeth had that first seizure. We have now been married twenty. “These situations put a strain on a marriage.” “Get counseling!” “There are permanent institutions for such children.” “Say, I know a couple whose child…and do you know how they ended up?
Many people do mean well. But no matter how well-intentioned or how hard they try, when you find yourself living in a unique situation, and are actually wedded to it — when the getting through each day amounts to another in a line of unexpected blessings just by having made it through the evening — no person outside of ourselves can really understand or be of help. The years have taught us a new way to live; each of us has learned acceptance and new ways to grow.
Our faith has been tested. So has our will. They still are! Even more than most, we haven’t a clue what tomorrow brings. Life follows a script that the living cannot read. But being in a medically guarded condition forces us to confront, and focus on, the plot-less, precious present. Elizabeth, and our expectations for her, started out one way. She is now blossoming in another. Although still nonverbal, wheelchair-bound, and completely dependent on us and others for all her needs, she is a beautiful teen with the spark of life in her eyes. To us, she is the sun, the moon, and the stars. We couldn’t imagine our lives together any other way.
To read more Beyond Blue, go to www.beliefnet.com/beyondblue, and to get to Group Beyond Blue, a support group at Beliefnet Community, click here.
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