In college and graduate school and for years after, I had “nightmares”. These nightmares always carried the same theme. I was late for an important exam and couldn’t get there. There were obstacles. Or I hadn’t studied and I was on my way to the exam. I was unprepared.
The nightmares were productive. They scared me into studying. I set alarms. In reality, I missed no exams. I passed my tests. The nightmares prepared me for life. I went to work, to appointments, and to Court on time.
Then, along came my son. There were now two sets of deadlines to meet. This would be easy! Or so I thought.
My son introduced me to dawdling, slow motion, distraction, and mood swings. I was confronted with refusals to brush teeth, comb hair, eat breakfast, put on clothes, shoes, coats. I witnessed frustration, tears, screams and uncontrollable laughter (sometimes by both of us). I have been treated to potty accidents on the way out the door, and routines which cannot be broken. None of this fits neatly into our schedule.
I try to account for unforeseen events with early waking times and rigid routines. Sometimes, this works and we’re off to the races on time. Sometimes, I’m cutting it really close. The rest of the time, I’m late.
One fine day, when I wasn’t late, I was surfing the web and found that Sesame Street Live! was coming to town. When my son was about 2, we took him to see a Diego Live show. He was scared at first, but by the end, he was dancing in the aisles with the other kids. Recalling that, I thought this would be fun. My son loves Elmo and we could do something different as a family. I bought tickets. I showed my son the pictures. We talked about it for weeks. We looked at it online. The day came.
“Where are we going?” I asked. (Well, really, I asked like three times before I got his attention). “Sesame Street!” he answered. “Yay!” I cheered. “We’re going to see Elmo and have lots of fun!” He smiled.
My husband and I had decided that it would be best if we got there a little late so he wouldn’t squirm or bolt or scream or tantrum or……Bad idea. We hadn’t been there since before my son’s birth and had failed to allow enough time for travel, parking, walking in, validating tickets, finding our seats.
And, oh, I forgot the stairs. About eleventy million stairs. All with dirty rusty, handrails. There were sets of about 5-6 stairs, a landing, then another set of 5-6 stairs. There were at least six separate sets of handrails. Enough to accommodate large crowds for basketball games and Justin Bieber concerts. My son had to go up one set of stairs, touching the handrail. Then, down. Up and down. It became a maze of stairs and handrails. As we pulled him away, there was discontent. Not too bad. You know, like the first drop of rain before the hurricane.
The venue was loud and dark. My son was scared all over again. We never made it to our seats down front. Too scary. We sat toward the back. He buried his head in his daddy’s shoulder. He peeked out. He wanted to leave. Intermission came. Daddy took him for ice cream. Maybe this would cheer him up and we could stay. Maybe he would calm down.
As I sat there waiting, contemplating why on Earth I thought this was a good idea, a woman approached me. I did not recognize her. She recognized me. Smiling, she said she was the mother of a girl from my son’s preschool. I remembered that she helped out or taught there or something. She held her daughter’s hand.
She plopped down in front of me. Thus, began one of the weirdest experience I’ve had since my son’s diagnosis. “I heard about your son and I’m so sorry. It must be so difficult to raise a child like yours. I don’t know how you do it. What a challenge it must be. I don’t think I could do it. I couldn’t face it. I really admire you.” I was dumbfounded.
My husband approached. “(Her daughter) say hello to (my son.)” “Hi” she says obediently. My son, oblivious to her, squirmed away trying to run up and down the 75 steps between the entrance and the floor. No “hi” back. My husband was then treated to a repeat of what she’d just told me. Finally, our waterboarding complete, she said she had to go, and flounced off with her daughter in tow, seemingly, self-satisfied that she had done a good deed by making us feel “special.”
My husband and I looked at each other. We didn’t have to say a word. While she may have meant well, we had just been pitied, told our child was less than hers and that she would, basically, commit suicide if she was us.
Truly, and without hesitation, I can tell you I was unprepared for this. All the exams, life’s experience and nightmares did not remotely prepare me for this. But I want to be prepared now for the future. I want to know the answer, the reply, the comeback. If I could do it again, aside from my primitive instinct to kick her ass, what would I say?
“It’s too bad that you could not raise your child if she had a disability. I guess you’d just give her away? Send her back? Revoke the love you gave when you first saw her face?”
“Don’t admire me. I love my child, the same as you love your child. My child is different. He is not defective. He is not less than your child. He will grow into a man who will never make the distinction you just did. He will be a thousand times greater a person than you.”
Ya, that sounds good….Oh, hell. I’d rather just kick her ass. Ya know what I mean? Does that make me a bad person? I’m still unprepared.