Love and Limitations – Thoughts About Advocacy

by Donna Kirk on January 20, 2014

I love to watch people and wonder about their lives. Doctor’s offices are the best venues for my type of eavesdropping. Folks sit close together and their conversation is easily overheard. If I’m really intrigued, I’ll ask questions. To date, no one has rejected me.

Maybe that’s because I don’t talk to just anyone and I’m forthcoming about my own experiences. I’m attracted to people with developmental disabilities. My son Matthew was a person with a dual diagnosis and we spent many hours waiting for doctors and responding to people who were captivated by him. I saw our interaction as a conduit to dispelling misconceptions and ignorance. Matthew died in 2010 and I miss our two person advocacy routine.

Last week, I had an appointment with an endocrine specialist at a large Hamilton hospital. Many doctors were affiliated with that clinic and the waiting room was full. After I registered at the front desk, I had to walk in front of two ladies to take one of the few available seats. I excused myself and wished them a good morning.

“It’s not a very good morning for my daughter,” said the older woman. The younger one shook her head vigorously, her arms folded across her chest.

“Oh?” I said.

“No. We have to come here twice a year. Marie gets very stressed out at these appointments.”

Marie nodded at least ten times. Her thinning grey hair was held back from her face with a red barrette. Her white blouse, brown skirt and sweater were immaculate. I wondered if she could talk. She had Down syndrome and appeared to be well into her fifties. The mother was probably over eighty.

I was about to ask Marie if she’d taken the day off work for her appointment when a doctor popped his head around the corner and called her name. Mom stood and held out her hand but Marie wasn’t budging. After being coaxed and promised favourite goodies, she allowed herself to be hauled to her feet. The ladies followed the doctor and disappeared down the corridor, arms around each other’s waists. I watched until they were out of sight.

I assumed I’d never see them again and opened my book. Fifteen minutes later, they were back. “We’re finished with the doctor, now let’s get our coats on,” said Mom. Marie stood in the corridor; she wasn’t entering that waiting room again.

Her mother picked up the coats and scarves. She lifted her daughter’s arms and slid the coat on, zipped it up and wound the scarf around her neck. Marie leaned over and kissed her mother several times. She smiled at me. “We’ll both be happy when we’re on our way out the door.” I smiled back.

The next hurdle was the elevator. Marie didn’t want to get in. “It’s the only way out of here,” said mom, urging her daughter along and struggling to put on her own coat and scarf. Marie held her mother’s hand and stepped into the elevator. The doors closed and they were gone.

Scattered thoughts prevented me from getting back to my book. Medical appointments were stressful for people with developmental challenges and taxing for caregivers. I wondered how the two ladies got to the hospital. Marie was obviously a loved and well cared for daughter. But what I had observed made me think.

I wondered if Marie lived in the family home with her parents. Perhaps her mother was widowed the sole caregiver. Were there any siblings to help out? Was a support system in place in case of a crisis? If not, did anyone know what would happen to Marie?

Possibly her family was affiliated with a community living association and she had an independent life in an appropriate setting. Perhaps she spent her day in a work environment and her evenings helping with meals and enjoying various forms of entertainment.

When they were getting ready to leave, Marie had not done anything for herself. Mom looked after her daughter with practiced, efficient purpose. There seemed to be a co-dependency between the two women. Was this the routine of their lives?

But maybe Marie let her mom take over when they were together, enjoying the attention. And mom loved fussing over her daughter, as mothers do.

I’ve known many families like Marie’s and mine. I’ve experienced their dilemmas and fears. And over the years, I’ve seen the results of calculated, well-intended choices. We think we know the right answers.

But really, we’re just speculating.

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{ 5 comments… read them below or add one }

Kelley January 21, 2014 at 10:46 am

Great reading!


Crystal January 21, 2014 at 12:05 pm

Great story! It’s because of Matthew that I too am always interested in the family stories and enjoy watching the love between a family member and their child.


jennifer January 21, 2014 at 2:40 pm

i like to think that mom’s always know the right answers for their children 🙂


Liz Bryant January 24, 2014 at 2:12 pm

Donna I love the way your mind works. Curiosity, advocacy, kindness are hallmarks of your clear focus.


Mary Stewart January 28, 2014 at 5:41 pm

Great read Donna. You have such a talent for making us all think “outside the box”. Thanks


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