Perspective. It’s what I must remind myself to keep, particularly regarding Calvin’s intractable epilepsy. The alternative is to be forever imprisoned in the dark chasm of despair, grief and self pity that I fall into every time Calvin has a seizure. And, as time passes, Calvin’s seizures seem more and more likely to continue for the remainder of his lifetime despite the potent drugs he takes. I must also keep perspective about the drugs. Although they are likely causing bad side effects, further compromising his development and possibly changing Calvin's personality, the current ones seem to be thwarting at least some of his seizures.
Perspective, though, comes not only from within but from the powerful stories shared with me by other parents of children with epilepsy, which sadly, are many.
Recently, the father of a fourteen-year-old boy reached out to me. He had read my blog and wanted to tell me of an uncommon treatment that had helped his son. At the time he emailed me his son was coming out of his third medically induced coma meant to stop his seizures. He went on to write more about his child:
“no issues at birth, normal delivery. Began having seizures at 3 mos. following DPT immunization. Hundreds of myoclonic seizures per day. Lived this way until aged 7, when seizure type flipped abruptly to grand mal. About 80% of his seizures last longer than 30 minutes. They can go up to 90 minutes. He desaturates in many of them. Significant brain damage. Fourteen years old but developmentally about 3-4 years.”
I read this and I stopped in my tracks, tears tracing lines down my dry face. This parent was reaching out to me while his son was in a hospital deep in coma. So selfless. So empathetic. So incredible.
Shortly after starting this blog an Alum from my college swim team wrote to me about his and his wife's twenty-year-old son who died from complications of epilepsy after seventeen years of fighting it:
“Long and short of it, they never really controlled his seizures, although they were managed pretty good during the day. In school, if he was tired, or fell asleep, he would have them. Every night he would have them.”
He was their only child.
So I try to keep perspective, to be mindful of others' plights, to show compassion and understanding and to avoid the gravity of narcissism. I must realize that, although Calvin has it pretty rough, as do we at times, there’s always someone whose got it worse, and I want to be there for them, reaching out with all I’ve got to give.
Perspective, though, comes not only from within but from the powerful stories shared with me by other parents of children with epilepsy, which sadly, are many.
Recently, the father of a fourteen-year-old boy reached out to me. He had read my blog and wanted to tell me of an uncommon treatment that had helped his son. At the time he emailed me his son was coming out of his third medically induced coma meant to stop his seizures. He went on to write more about his child:
“no issues at birth, normal delivery. Began having seizures at 3 mos. following DPT immunization. Hundreds of myoclonic seizures per day. Lived this way until aged 7, when seizure type flipped abruptly to grand mal. About 80% of his seizures last longer than 30 minutes. They can go up to 90 minutes. He desaturates in many of them. Significant brain damage. Fourteen years old but developmentally about 3-4 years.”
I read this and I stopped in my tracks, tears tracing lines down my dry face. This parent was reaching out to me while his son was in a hospital deep in coma. So selfless. So empathetic. So incredible.
Shortly after starting this blog an Alum from my college swim team wrote to me about his and his wife's twenty-year-old son who died from complications of epilepsy after seventeen years of fighting it:
“Long and short of it, they never really controlled his seizures, although they were managed pretty good during the day. In school, if he was tired, or fell asleep, he would have them. Every night he would have them.”
He was their only child.
So I try to keep perspective, to be mindful of others' plights, to show compassion and understanding and to avoid the gravity of narcissism. I must realize that, although Calvin has it pretty rough, as do we at times, there’s always someone whose got it worse, and I want to be there for them, reaching out with all I’ve got to give.
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