Peu de personnes sont au courant mais Dana Reeve a été chroniqueuse dans les années 2000 pour le site accesslife.com. Dans ses écrits, elle parle bien sûr de sa vie et de son combat au côté de son mari, Christopher Reeve mais aussi de Will, Alexandra et Matthew.
Voici un article paru sur le site le 30 juin 2000:
I sit here on a rainy Father's Day contemplating a topic for my first article. I have been asked to submit a monthly essay on caregiving - or overcoming adversity - or the triumph of the human spirit - or any number of subjects for which my situation and my husband's should make me eminently qualified.
Five years ago, my husband was rendered quite suddenly a ventilator-dependent quadriplegic and his children and I, just as suddenly became his support system, allies, and caregivers.
I know that quite often we provide the reason why he can face each day with a positive outlook despite his severe limitations.
Family unity As a family, we continue to experience joy and laughter even though we have lost so much. We make it a point to get out and do things, see people, live a full life, even when it is not always easy -- in fact, it rarely is.
Living with my husband's disability for five years and counting, we are doing quite well and should have a number of insights to share. What I am struck by, however, is how hard it is to encapsulate our experience in any way that might be useful to anyone else.
So, on this gray and drizzly Father's Day, I find myself looking back to the beginning of this particular journey in our life, to a time when who my husband was as a father was being both challenged and redefined.
And as is so often the case in our life, it is our children and their insights that bring us to a point of clarity and understanding and guide us toward hope for the future.
In that light, I share with you a story.
It took a week before Will could muster up the courage to walk down the corridor of 6 West -- a wing in the UVA Medical Center that was serving as our home away from home - and actually enter Chris's room in the Intensive Care Unit. The last time Will had seen him, Chris was lying on a gurney, intubated with bright caution-yellow wedges of foam stabilizing his broken neck, while the medevac helicopter waiting to take him away rumbled and whirred outside.
Will had been frightened by what he saw, and I'm sure the image of his dad lying there unable to answer his questions lingered in his mind and haunted his imagination.
Matthew and Alexandra, Chris's two older children, had flown in from England with their mother and spent many hours a day with Chris -- swabbing his mouth with small sponges that provided moisture and, later, when he was more fully conscious, talking to him, reading to him, kissing and hugging him.
But Will, not quite 3, like most children his age, probably thought that what happened to Daddy might happen to him if he ventured too close.
So he kept his distance, listening intently to others reporting on Chris's progress, monitoring the gradually improving moods of family members.
He processed the events that had occurred by acting out Chris's accident over and over on the hobbyhorse in the pediatrics playroom -- his own self-initiated play therapy.
He would fall off the horse in slow motion, calling out, "My neck! My neck!" and I would reassure him that his neck was fine, but Daddy's was injured and made it so he couldn't move.
On the day Will finally entered his father's room, Chris was wide awake, smiling, and ready to make entertaining faces. He couldn't sit up because his head was in traction and he couldn't speak due to the snugness of his newly inserted trachea tube, yet he was clearly the same Daddy in many other ways that Will recognized and loved.
We kept the first visit fairly brief with lots of snuggling; Will chattered away about the freight trains that went by periodically outside the hospital lounge windows and the games he played with Susan and David, two kind nurses who had taken Will under their wings. (Later in the month, they would organize a little birthday party for him, complete with rubber-glove balloons and a tiny pair of scrubs gift wrapped with a festive bow made from burn gauze.)
I could see the fear melt away from Will's face as he positioned himself in the crook of Chris's motionless arm and his knobby knees resting on his daddy's belly.
We left the unit ebullient after our visit, fairly skipping past other families and other visitors who waited with familiar numb expressions brought on by worry and sleeplessness. I recognized those faces. I was one of them, on another day, perhaps. But not today.
Will's overcoming of his fear had imbued him with a newfound courage. His visit reminded Chris that his children -- all of them -- needed him, loved him and delighted in him, whatever the circumstances. And I was awash in the welcome, warm glow of hope.
Will became a regular fixture in the ICU after that, learning the rules, which were strict by necessity, and befriending the hard working, dedicated nurses.
On one particular day, a short time after his first breakthrough visit, Will sat near me on the floor of the mail room eating a small cupful or orange sherbet. The frozen treat, usually reserved for tonsillectomy patients, had been slipped to him by a newly acquired nurse friend.
"Mommy," Will said between bites of sherbet, "Daddy can't run around anymore."
"No," I replied simply. "Daddy can't run around anymore."
"And Daddy can't move his arms."
"No, he can't move his arms."
"And he can't talk."
"No. That's right -- he isn't able to talk right now."
Will paused, sucked on the flat wooden spoon, his face puckered in concentration. And then, suddenly, brightly: "But he can still smile!"
And these are, I think, the gifts that children bring to us if we let them: hope, unadulterated love, immense courage, and the potential through any kind of hardship to still smile.
It has now stopped raining. And everything is much, much clearer. How fitting.