The trials of being my son’s mother

With his nurses, caregivers and friends he’s charming and lovable. With me he’s angry and inconsolable

Marcy White

From Monday’s Globe and Mail Published on Monday, Nov. 30, 2009 12:00AM EST Last updated on Monday, Nov. 30, 2009 6:28PM EST

As Jacob and I make our way down the crowded aisles at the grocery store, I am acutely aware of strangers glancing at us. They see a mother and son shopping together. But we stand out because we are different.

Jacob can’t sit or stand without support, so I can’t secure him in the seat at the front of the cart, or have him stand at the end, holding onto the metal basket as I push a food-filled wagon through the store. Instead, we make our way down the aisle with me pushing him in his wheelchair and him balancing our selected items on his lap.

Like many kids his age, Jacob does not enjoy this errand. As soon as I stop pushing him to grab an item off the shelf, he complains. Jacob knows what he wants, but unlike his peers he can’t run ahead and explore on his own. This frustrates him, so he screams. As I try to console him, he screams louder.

While many parents can treat their little helpers to a candy or a bag of chips at the end of a shopping expedition, I don’t have this reward at my disposal because Jacob can’t eat.

My seven-year-old son has Pelizaeus-Merzbacher disease, a rare neurodegenerative disorder that affects all aspects of his life. Jacob cannot sit by himself, walk or speak. He is fed by a tube that was surgically implanted into his stomach when he was an infant. But he understands what is said to him and loves listening to silly jokes.

Ever since he was born, Jacob has had a special effect on people. There is something intangible that draws people, and makes them fall in love with him. Year after year, I have watched my son attract people to him and melt their hearts with his infectious laughter and mischievous grin.

But when they leave, he changes. He screams, he protests and he cries. Gone is the charm, the lovable smile and the twinkle in his green eyes. I am left with an angry little boy who is inconsolable. Why can’t I elicit the same wonderful qualities that his nurses and friends do so effortlessly?

I am in charge of Jacob’s care, his schedule and his endless appointments. I am the one who accompanies him to the doctors he hates. I am the one who holds his hand and walks with him in the hallways of hospitals while we wait for hours for the dreaded visits.

I feel like a nasty mother who allows therapists to subject him to painful and difficult exercises. It’s no wonder he prefers his caregivers whose main goal is to entertain and please him.

As Jacob’s mother, I know he is receiving the care he needs. His frequent screaming in my presence is purely behavioural, designed to manipulate me into giving him what he wants. My heart beats quickly as I run through the list of things that might calm him down, like chasing our cat Spot, helping him strum his red guitar, reading a book or telling him a story.

When nothing else works and I am at a loss for what to try next to quiet his screams, I resort to the phone call. At this point, Jacob has been yelling for so long and with such vigour that his face is red and his hair is so wet he looks like he just had a shower. Listening to his favourite person, Belle, on the telephone is a guaranteed mood changer. It’s the one thing that will always calm him down and make him smile.

In my weaker moments I feel sorry for myself. I am upset that I can’t soothe him. I am his mother; I should be his favourite person.

When the crisis is over and peace has been restored, I look at my curly-haired child and know that his behaviour, in some way, is typical for any child.

Most parents will agree their children behave better with those who aren’t their parents. And Jacob, in this respect, is a regular child. Intellectually I know this, but it hurts. It’s heartbreaking to witness someone else pacify my child, something I repeatedly try but fail to do.

Compared to Jacob, his healthy twin sisters are easy to parent. At 4½, they are typical children. When they are upset or hurt, they run to me. They get angry when I go out and leave them in the care of someone else. As their mommy, I can make everything better. My kisses fix their boo-boos and they love it when I play with them. Why can’t I fill the same role for my son?

I try.

In September, after a stressful doctor visit, I brought Jacob with me to buy a coffee. He enjoyed sitting on my lap, watching the cars drive by the store. It has become our special outing, on our way home from an appointment or when we have a free hour on the weekend.

I look forward to these moments of quiet and peaceful interaction with my son. When I ask if he wants to come for coffee with me, he smiles and slowly nods his head. My heart expands and I feel a whoosh of love for my little boy.

It is hard being the one he associates with dreaded appointments. It is challenging to find things Jacob likes to do with me. But I will persist because I love spending happy times with my son. I will keep trying to be the one he wants when he is sad. Because I am Jacob’s mom.

Marcy White lives in Toronto.

Illustration by Steve Adams.