I'm part of an online epilepsy support group that has members from all over the world. This morning I read a post from a Mom in New Zealand. Her young baby had just been diagnosed with seizures and was prescribed anti-epileptic medication. Tests had been done but so far there was no known cause for her baby's seizures. She wondered what life held in-store for her darling child. She wondered what her child's cognition would be like. She wondered what she should say to her other two children, both under the age of five. She was glad to know that because of this online site, she was not alone. She was not the only mother whose child was suffering with seizures. She sounded like me, 30 years ago with an infant seizing every day, plus two older children under the age of five. Where we differed, however, is that there was no online internet supports 30 years ago for me. There was no internet! I often felt I was the only mother on the planet struggling with an infant with medically refractory seizures. I felt so alone.
I have so much to tell this Mom in far away New Zealand. Or should I? Should I tell her about the years of not sleeping, cause you're lying in bed waiting to hear your child seize? Should I tell her that if the seizures aren't controlled her child will struggle in school? Should I mention that she probably won't be able to return to work, that she'll be too busy caring for her child, taking her to medical appointments, spending time in the hospital with her?
I'd better think about this.
Instead of replying to her message I went outside, and walked for 90 minutes along the scenic Scarborough Bluffs, trying to gather my thoughts. I didn't want to scare her. There will be no easy fix for her and her baby. Of course I hope that science now knows so much more about the brain and seizures than it did 30 years ago, but I'm frightfully aware that we still have so much to learn.
What to tell her? What to tell her?
Do I tell her my son's skull was opened up six times and numerous pieces of his left frontal-parietal brain were plucked out before the seizures stopped? Do I tell her that he's lost the use of his right arm and right hand? Do I tell her to guard her marriage, that having a chronically ill child decimates many marriages? Do I tell her about the upside, that my two older children both became amazing doctors because they grew up with a chronically ill sibling? Do I tell her that after 26 years of relentless explosions in his brain that my amazing son is now seizure-free?
So much to tell her...so much not to tell her.
About two hours after my walk I felt ready to give her some friendly, Mother-to-Mother advice. I opened up FB, scrolled and scrolled but I could no longer find her post. I don't know what happened to it. I'm hoping she realized she should breathe and take it a day at a time, which was just what I was going to tell her. All I can do now, is wish her well from Toronto.
I have so much to tell this Mom in far away New Zealand. Or should I? Should I tell her about the years of not sleeping, cause you're lying in bed waiting to hear your child seize? Should I tell her that if the seizures aren't controlled her child will struggle in school? Should I mention that she probably won't be able to return to work, that she'll be too busy caring for her child, taking her to medical appointments, spending time in the hospital with her?
I'd better think about this.
Instead of replying to her message I went outside, and walked for 90 minutes along the scenic Scarborough Bluffs, trying to gather my thoughts. I didn't want to scare her. There will be no easy fix for her and her baby. Of course I hope that science now knows so much more about the brain and seizures than it did 30 years ago, but I'm frightfully aware that we still have so much to learn.
What to tell her? What to tell her?
Do I tell her my son's skull was opened up six times and numerous pieces of his left frontal-parietal brain were plucked out before the seizures stopped? Do I tell her that he's lost the use of his right arm and right hand? Do I tell her to guard her marriage, that having a chronically ill child decimates many marriages? Do I tell her about the upside, that my two older children both became amazing doctors because they grew up with a chronically ill sibling? Do I tell her that after 26 years of relentless explosions in his brain that my amazing son is now seizure-free?
So much to tell her...so much not to tell her.
About two hours after my walk I felt ready to give her some friendly, Mother-to-Mother advice. I opened up FB, scrolled and scrolled but I could no longer find her post. I don't know what happened to it. I'm hoping she realized she should breathe and take it a day at a time, which was just what I was going to tell her. All I can do now, is wish her well from Toronto.
Wet, cloudy, dark days at Scarborough Bluffs.
This is beautifully written. The dilemma of what to tell a mother going through the turmoil of a child having seizures.
ReplyDeleteAnd yet you have provided her with compassionate advice.
Thanks so much! My heart goes out to parents of children newly-diagnosed with seizures.
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