I stopped, heart pounding in my ears, he must be reading my mind. In some cultures, people with epilepsy were thought to have psychic abilities and became shaman. My son is incredibly intuitive so this is not a concept I've easily dismissed.
Of course, some cultures believe that epileptic seizures are caused by which craft and malevolent spirits, and this is also something I've not taken lightly. Sometimes I have to conjure up amazing spells to get him to not have a meltdown. And I reckon that all parents wonder if their child is possessed at least once in a while.
Of course, some cultures believe that epileptic seizures are caused by which craft and malevolent spirits, and this is also something I've not taken lightly. Sometimes I have to conjure up amazing spells to get him to not have a meltdown. And I reckon that all parents wonder if their child is possessed at least once in a while.
"Well," I said, swallowing hard and stalling for time, trying to fight the urge to cry, since I've been so preoccupied this past week with my husband's vocal cord surgery. "I have a lot of worries. But really I only a couple of big fears."
He continued to look me in the eye, and because of his autism, eye contact doesn't come easy for him. I knew he was serious.
He continued to look me in the eye, and because of his autism, eye contact doesn't come easy for him. I knew he was serious.
I went back to rinsing the dishes, water running, buying time, fighting back tears. Because what do I tell him?
That my biggest fear is that my breast cancer will return?
That his Dad's tonsil cancer will return?
That something will happen during his Dad's upcoming surgery that will negatively impact our lives forever?
That he'll have another seizure on the operating table?
Will the highly trained, very skilled, and wonderfully caring Lady ENT slip and whoops Daddy doesn't have the ability to talk again? Ever.
That we'll be in a fatal accident going to or coming home from the surgery in Seattle?
That my son's epilepsy will end up causing his death? In his sleep? Sudden Unexpected Death in Epilepsy is a real thing. And it really scares me. Really really fucking scares me. Easily top five in my worst fears.
And then there are the state of the world fears.
The fears that some people see my son as a burden on the system. Because he has intellectual disabilities, he's seen as "less than," and somehow not deserving of love and acceptance. Will they come take him away? Lock him up in a camp with other people who are seen as "less than"? As a person of Jewish decent, the whole "camp" thing leaves a bad taste in my mouth. Maybe that's why I haven't ever registered my kids for camps during the summer.
We've had internment camps in America before. We locked up the Japanese during World War II. What's to stop it from happening again? What's to stop them from taking the people who are autistic? Or epileptic? Or people who live with any disability? Or people who have had cancer? Or have a different skin color?
Will he be thrown away by a society who now thinks that a college education, and having an intellect, is bad for America? What does that mean for my career? For my husband's career? What does it mean for our health insurance? And didn't the Senate vote take place today? My entire family is a pre-existing condition. Did it pass? I heard they didn't have enough yea votes going in...but I don't know the outcome. And it's important. Because eventually, my kid will probably end up on Medicaid. Right now, under the Affordable Care Act, we can keep him on my husband's insurance until he's 26. Thank you, Mr. Obama, for that one. Thank you for not permitting insurance companies to charge us more because we have so many pre-existing conditions and putting life-time limits on how much money my family will have to spend on all of what we deal with. Thank you.
The fear that all of that could be gone is truly terrifying for me.
Dishes in the dishwasher. Counters and table wiped down.
"What are your worries, Momma?" he asked.
"I don't know, honey. What are your fears?" I asked him.
"I'm not afraid of anything Mom," he said with confidence.
"Well, that's great, Nathan!" I said in a supportive tone.
"But, Mom, what do you worry about?" he asked again. I know he's persistent. His brain gets stuck in a loop and he will continue to ask the question unless I answer him.
"I'm worried that...the garden needs to be watered. Would you like to come outside with me and help me water the veggies?"
"YEEEESSSSS!" He yelled. "MOM! WE NEED TO CHECK MY BROCCOLI!" he continued to yell, in a very excited way. He loves broccoli. Being outside, connecting with the food he chose to grow in his raised garden bed, the water, the sound of the birds, the sun shining. All of this helped calm both of us down.
That my biggest fear is that my breast cancer will return?
That his Dad's tonsil cancer will return?
That something will happen during his Dad's upcoming surgery that will negatively impact our lives forever?
That he'll have another seizure on the operating table?
Will the highly trained, very skilled, and wonderfully caring Lady ENT slip and whoops Daddy doesn't have the ability to talk again? Ever.
That we'll be in a fatal accident going to or coming home from the surgery in Seattle?
That my son's epilepsy will end up causing his death? In his sleep? Sudden Unexpected Death in Epilepsy is a real thing. And it really scares me. Really really fucking scares me. Easily top five in my worst fears.
And then there are the state of the world fears.
The fears that some people see my son as a burden on the system. Because he has intellectual disabilities, he's seen as "less than," and somehow not deserving of love and acceptance. Will they come take him away? Lock him up in a camp with other people who are seen as "less than"? As a person of Jewish decent, the whole "camp" thing leaves a bad taste in my mouth. Maybe that's why I haven't ever registered my kids for camps during the summer.
We've had internment camps in America before. We locked up the Japanese during World War II. What's to stop it from happening again? What's to stop them from taking the people who are autistic? Or epileptic? Or people who live with any disability? Or people who have had cancer? Or have a different skin color?
Will he be thrown away by a society who now thinks that a college education, and having an intellect, is bad for America? What does that mean for my career? For my husband's career? What does it mean for our health insurance? And didn't the Senate vote take place today? My entire family is a pre-existing condition. Did it pass? I heard they didn't have enough yea votes going in...but I don't know the outcome. And it's important. Because eventually, my kid will probably end up on Medicaid. Right now, under the Affordable Care Act, we can keep him on my husband's insurance until he's 26. Thank you, Mr. Obama, for that one. Thank you for not permitting insurance companies to charge us more because we have so many pre-existing conditions and putting life-time limits on how much money my family will have to spend on all of what we deal with. Thank you.
The fear that all of that could be gone is truly terrifying for me.
Dishes in the dishwasher. Counters and table wiped down.
"What are your worries, Momma?" he asked.
"I don't know, honey. What are your fears?" I asked him.
"I'm not afraid of anything Mom," he said with confidence.
"Well, that's great, Nathan!" I said in a supportive tone.
"But, Mom, what do you worry about?" he asked again. I know he's persistent. His brain gets stuck in a loop and he will continue to ask the question unless I answer him.
"I'm worried that...the garden needs to be watered. Would you like to come outside with me and help me water the veggies?"
"YEEEESSSSS!" He yelled. "MOM! WE NEED TO CHECK MY BROCCOLI!" he continued to yell, in a very excited way. He loves broccoli. Being outside, connecting with the food he chose to grow in his raised garden bed, the water, the sound of the birds, the sun shining. All of this helped calm both of us down.
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