my day

[Guest guest]

All suffering is relative. I wonder if a man who has lost his ability to walk envies the man who lost his hearing; saying “At least you can still walk.” I have found myself feeling this way about my life with my autistic son. When he was first diagnosed I went to a support group meeting for parents of children with various disabilities and medical conditions that I cannot pronounce or remember. What I do remember is feeling immense guilt as the circle of parents introduced themselves and described -with drawn faces- the brain shunts and feeding tubes; quoting statistics about the prevalence of their child’s rare disorder. My son is perfectly healthy. He is a hearty, strong boy. He has no life threatening condition. Yet, wrapped deep inside my guilt was envy. I thought; “At least your child knows that you exist; they say ‘I love you.’

Suffering is minute-by-minute. It shows you what is possible; in those fleeting moments when your child looks out the window and says “Looks like rain.” You run through a list in your mind, trying to determine if you have just heard a spontaneous remark or if he is repeating something he has heard before.

Suffering is despising people who load you up with platitudes about being chosen to parent an autistic child. I didn’t sign up for this. I was drafted! I’m not patient. I require eight hours of sleep. I have no faith in God. I avoid confrontation. Is this a test? I’m failing miserably. Alienation by my own choice; I don’t know these people anymore. How did I ever know them? So shallow, such trivial lives! Then the waves of envy, guilt, and hatred come. I wish I had the luxury of living a trivial life.

Suffering is laughing when life comes at you with both barrels because laughter is all there is. Autism is a delicate walk through a maze of tripwires daily. The cruel uncertainty of the day faces you every morning.

“ I must remember that they have set up carnival rides in the K-Mart parking lot; I have to take a different route for the next few days. He caught sight of it yesterday. I turn right instead of left to avoid the carnival confrontation. He knows! Turn right- melt down! This will make him have a bad day at school today. I have to send him to school today, I have errands I have to run. After fifteen minutes he still screams, kicking and clawing, spitting and crying. Giving in will prove to be a problem tomorrow and the next day until the carnival is gone. Should I give in? He has to learn that he cannot have what he wants all the time.” We turn around, I spend my phone bill money to buy cotton candy, a Sponge Bob balloon, and tickets for three rides. He refuses to ride any rides, but he likes to watch the spinning teacups. He stands watching them spin, holding his balloon. He glances skyward and lets go of the balloon watching it until it disappears. He grabs my hand, sticky with half eaten cotton candy and says “ , you have to go with Beck.” Which means “I love you and I want to be with you, mom”

If this is suffering, I’ll live it every day for the rest of my life. All suffering is relative and I envy no one today.

rmaher1969@...

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