Gillian

An email I received today, just as I received it.


As a regular reader of your blog, I read today’s post about how upset you are at an optometrist for not doing what you think is an adequate job treating your son. Instead of emailing the man and telling him why you want your son to wear his glasses, you enter into a kind of barrage and get upset. Well, this makes me mad. But maybe this works for you and gets you what you need for your son. Today I was extremely depressed and wrote down what happened in my usually normal, little mind. I am sending it to you to add to your collection of knowledge about how parents cope with being in our club. I am sending it to you hoping that you will see another point of view in which whether or not a pair of eyeglasses that may or may not help your child’s vision is the least of most people’s worries.

Most sincerely,
A reader of your blog, Gillian.

“How could I buy two Hibachis and charcoal briquettes on this snowy February day without drawing suspicion?” I asked myself. A mother in a local town had been arrested for murder after trying to take her life and the life of her eight-year-old son. She survived, and her child died, but she had only used one Hibachi. Brad Delp, the lead singer of the band “Boston”, had used two and did it in the bathroom, taping the door and leaving a note warning of carbon monoxide and to check on his cat, Floppy.

Would anyone be suspicious if I took my disabled son, drooling and hyperventilating in his wheelchair, to the local market and bought a Hibachi and charcoal briquettes? I could buy some steak and hot dogs, too, and the light snow that started overnight has ended. But what if I bought two? I could go to two stores.

The tiny bathroom of my rented apartment would be, for this singular instance, a perfect place since easy to fill with carbon monoxide. I could lie in the bathtub with a pillow and watch my son leaning back in his wheelchair… there’s just enough room. After taping off the vent and door, I could turn my iPod onto shuffle and light both Hibachis. Perhaps I could give my son some very sedating medication and bring him into the bathtub with me. It wouldn’t be a bad idea for me to take some of his strong anti-seizure medication, too. We would both fall asleep listening to my favorite music and never wake up. It’s too bad I don’t know what his favorite music is… one of the bummers of being very severely disabled.

Would it be necessary to leave a note behind? I’d have to let my other children, who live with my ex-husband, know how much I love them and believe in them. But if I believed in them that much, wouldn’t I have asked them to come help me? Perhaps a note could clarify this to them. Two of the three other children are adults now. But they would all know… everyone would know that I did it because living with and caring for my disabled son was too much to cope with and the help I asked for didn’t exist.

Tears are streaming down my face and my nose is congested. Sadness is what I am feeling. Sad that I cannot find a resolution to the impossible problem of how to care for my disabled son and live a normal life. Maybe if I believed that caring for my son was noble or a good-enough life, it would different. Maybe if I simply hired someone and trained them to care for him, (assuming I could scrape together the money), I could cope with this better. But the facts are that my son is a huge emotional and physical burden. The small joys his life brings to me are heavily cushioned with fatigue and depression.

I would not kill myself or my son. The fantasy I played out in my mind today, the first day of a week-long school holiday in which I have no help for my son, scared me and made me realize I need to get up and get out of this apartment even if it’s just for a little while. But I wanted to remember this moment. I wanted to remember the desperate hopelessness I am feeling and to change the situation so it never happens again. I wanted to remember why I need to go ask for help today from people I had not wanted to ask for help from… my family and government agencies. I wanted to record this moment so I can tell other parents feeling like this, yes, I have been there, too.

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