Friday, August 27, 2010

'Where dreams are made of'

My daughter and I were in the car when rapper Jay-Z's "Empire State of Mind" came on.

In New York,
Concrete jungle where dreams are made of,
There's nothing you can't do,
Now you're in New York,
These streets will make you feel brand new,
the lights will inspire you...

"It's Salamander's song!" I gasped, remembering the young man who hung out with us in the teen lounge when Ben was an inpatient. My younger son confused his name, so he became Salamander to us.

Salamander would sit at the computer, swaying endlessly to "Let's hear it for New York;" Ben would click away at a Playstation controller, being Indiana Jones; and my daughter would message friends on Facebook.

"I miss the hospital," my daughter said, with a puzzled expression, and part of me was shocked and part of me felt the same emotional pull in my chest.

Here are some of the things I will never forget about our staff and what they do:

The receptionists. They're frontline ambassadors for the hospital, like a mini-cheering squad for your child. When it's the weekend and you're bringing your child back after a visit home and the last place you want to be is a hospital -- they greet you like family.

Compassionate, skilled, hands-on nurses, who mentor exceptional, eager nursing students. They take the time to know my son, even though it's hard for him to communicate.

Handmade heating packs: wrap three damp facecloths in a blue pad, secure with orange hospital tape and heat for a minute in the microwave. They were soft, moulded to the body and carried a bit of nursing magic. Flannel blankets, fresh sheets, comfy towels.

Medicine 'care packages' when you first go on LOA. A nurse would disappear into a room behind the nursing station and reappear with multiple medicines apportioned out in tiny bags, each labelled.

Spotless inpatient floors and rooms. The cleaners never stop. Some call my son by name.

Take-charge physios who are able to be tough when parents would quake, pushing a child's rehab forward. An occupational therapist who fits Ben for a reclining chair and other equipment.

Child-life specialists who gave my son a sense of control when he was in a body cast, powerless: calendar countdowns; a Wii game; skeleton gloves to add to his collection ("I knew they'd come in handy at some point," she said).

A team of nurses and child-life specialists who calm my son in a specially-designed room when the orthotist cuts off his body cast so that oozing surgical wounds and bed sores can be treated. His favourite Star Wars movie plays on a big screen, flickering strings of fibre-optic lights are draped over his chest and, to my surprise, he's deeply relaxed. The body cast, cut in two, is raced up to the orthotics workshop where staff repad the inside and sew on multiple velcro straps so that the two pieces can be refastened as one.

A pharmacist who brings handouts on a medicine's side-effects to the patient's room. A doctor who comes to my office to consult on an issue.

Recreation staff who stop by each day to tell us what fun activities are on: a movie, a starry space-simulation in the Snoezelen room.

Artists who bring clay to the bedside so my son can grow his family of ghosts. Raised, accessible gardening for kids in wheelchairs on the terrace. A therapeutic-clown duo who act out a famous Star Wars scene -- on the fly, in the hallway -- for Ben. Closed captioning on the television so that my son, who has hearing loss, can comfortably watch his favourite shows.

Putting on bathing suits in your hospital room and taking the elevator down and being transported into a small heated pool where the lights are dimmed, a kaleidoscope of butterflies turns on the wall, a jet pummels your back and a gentle spray rises from the water like mist. You breathe.

The lifeguard who uses sign language. The music therapist who calls to say she'll be working with my son.

Everything under one roof. Ben even got in a trip to the dentist on the 2nd floor.

These are just some of the things for which I'm profoundly grateful.

Ben can walk a few steps now. He's weak and limps. But he does it. They've got him walking on a treadmill on bi-weekly visits to the rehab gym. He can climb stairs holding a hand. Two months ago, I couldn't imagine him ever walking again. Holland Bloorview is a hospital 'where dreams are made of.' They may not be the dreams of those who flock to Jay-Z's NYC, but they are dreams, nonetheless.


He looks very good standing in the photos - my first thought!

Heartwarming to read about the good care at Bloorview. Thank you!

I love your post Louise! Yes, all the people at Bloorview are truly amazing, and I am also profoundly grateful. Discharge is often bitter-sweet but I cherish my Bloorview memories. Congratulations to Ben! He's done so well :)

I agree on every point. Well said. So many of the hospital staff are angels on earth.

Wow, that place sounds amazing!

Ben looks great! And it's super that he's not only walking but climbing stairs too!

As I followed your posts and got little glimpses of the hospital, I thought "Wow! If only a place like Bloorview existed here..." But when I read this post, I was gobsmacked! Such a place exists?! That's an amazing place, a place that's really child-centred. Even if there was a place here that was just 10% of that, it'd be a dream come true!

I'm very happy that Ben's so well taken care of! Looking forward to hear more of Ben's progress : )

Hi Louise,

I'm happy that Ben is taking a few steps, as he will only get stronger from here on in. Learning to push the limits after major surgery does take some time (it was two and a half years before I exceed my doctor's expectations and defy medical precedent)but, I believe that your son will triumph over any obstacle standing in path, as the both of you begin to heal together.

Holland Bloorview is definitely the place "where dreams are made."

Never surrender,

Matt Kamaratakis

I love this Louise.
I have the highest regard for the staff I had the opportunity to work with at Bloorview. They are truly incredible and dedicated individuals.
I had never interacted with Therapeutic Clowns before meeting the team at Bloorview. They are amazing and truly exemplify interprofessional practice.


I'm amazed, frankly. I've never had that sort of experience in a hospital and would be hard put to make a list of positive things. Perhaps it's me, though -- I need to look harder.

And I'm happy to hear that Ben is walking a bit more -- keep it up, Mr.!

Thank you everyone for your kind messages and support of Ben!

No hospital is perfect, but the people here are exceptional, as is the approach of treating the whole child.

Lisa, I hope to post at some point a video interview we did with our therapeutic clowns. What they do is extraordinary and complex.

Irene -- I'm so glad to hear from you. Perhaps you can write a piece for us sometime sharing your wisdom. Perhaps something about how parents can best support a child after an acquired brain injury? Let me know!

Humbledmum -- We need to hear more about your son and experiences in Malaysia!

Ben must feel SO empowered now. It's good to hear of him walking! Bloorview and staff just sound WONDERFUL -- and coming to know you a little, I am happy that you're a big part of it, and that Ben was there to recuperate. :)

What a beautiful discription of what must have been a very difficult time for you and your family. It's a true testimate to your strengh Louise.