The Name I Dreaded Hearing

Before Jeff's accident, we didn't know anyone with a spinal cord injury. No one in a wheelchair, even.

There was really only one person we knew of who had lived with this injury. Who had been thrown from a horse years before, who breathed using a ventilator, and who had died from complications due to paralysis. He had become the face for those who had suffered this type of catastrophic injury.

In the days and weeks following Jeff's accident, I had thought of this person, but wouldn't let my mind dwell on him long enough for reality to sink in. In those early days, I was still holding on to hope. Clinging to the idea that Jeff just might walk out of the hospital, and with some time and effort, our life would go back to normal.

I remember one of the ICU nurses talking to me about a week after the accident about looking into getting Jeff transferred to a rehab hospital. She named a couple that were relatively nearby, and I listened to her with a pleasant look on my face as if I were hearing her every word. What I was really thinking was Rehab hospital? My husband doesn't need rehab. Once he starts regaining feeling, once he starts moving his arms again, we're going home. 

I didn't even really know what a rehab hospital was.

But even then, deep down, I knew that that ICU room was just the beginning for us. But I had to go through the denial like everyone else who experiences a life-altering scenario.

After about a month in ICU, Jeff was transferred to the 4th floor where he was under close observation. Every day, countless doctors, nurses, therapists, and aides paraded in and out of his room. We got to know these people - their personalities. We got to know their schedules.

One night, late in the evening, Jeff was almost asleep, and a night-shift respiratory therapist came in to administer a breathing treatment. She was one of the more - truth be told - annoying therapists. She always talked too loud, and her stories tended to linger just to the edge of my patience.

Like the nurse in ICU, she started in on the topic of rehab hospitals. After a minute or so of hospital chit chat, she looked at me and said, "You know, Christopher Reeve considered coming to Southern California for his rehab before deciding to go to one in New York."

I didn't hear anything else she said.

That name - Christopher Reeve - was ringing in my ears.

My heart was pounding heavily. I hoped Jeff was asleep and didn't hear her because he and I hadn't yet talked about that name.

I wanted to smack the therapist across the mouth as if she'd said the dirtiest of words. While she chattered on, I was screaming at her in my head Shut UP! How DARE you say that name in front of my husband! Don't ever say that name again! My husband is NOT like Christopher Reeve!

But of course, that is exactly who he was like. And as annoying as that therapist was, she was the first one to make me face that reality. Like Reeve, my husband - my super man - was stripped of all his physical ability and strength in the blink of an eye. And in the prime of his life.

That evening, after Jeff was asleep for the night, I Googled Christopher Reeve for the first time and read the details I didn't want to know, but knew would open up a whole new world for me.

I remember hearing of Reeve's accident when it happened in 1995. I was just out of high school, and was shocked at the news wondering how something so awful could happen to someone so vibrant. I recalled seeing pictures of him in his wheelchair with a tube coming out of his throat. I even recalled seeing his wife Dana by his side - knowing only her name, that she and Reeve had a young child at the time of his accident, and that she had tragically died just a year after her husband.

I laid in the cot in that tiny hospital room with tears trailing down the sides of my face wishing I could talk to Dana right now. If anyone could understand, surely she could.

But unlike me, Dana had no organization to turn to for help, advice, information, or just to find people in similar situations.

So Dana and her husband created one. The Christopher and Dana Reeve Foundation.

And for the first time, I visited that website and my mind was spun by what I saw - stories of injuries, pictures of people in wheelchairs living, actually living, with paralysis, statistics on spinal cord injuries, and endless information on things like medical research and financial assistance.

It was all too much to take in at one time. But what I did take away was that Jeff and I weren't alone in this. There is a whole community of people dedicated to helping those with spinal cord injuries maximize their recovery and learn to live again - due in large part to one man: Christopher Reeve.

Today, we have a magnet on our fridge of Christopher and Dana Reeve. She has her arms around him, and they are both smiling. When Evie saw the magnet, having no clue who these people are, she simply said, "Oh look, he's got a vent, just like Daddy."

THAT RIGHT THERE - Evie  being able to recognize that there's other people out there like Daddy - that alone makes this journey just a little easier to bear.

I am still learning about Christopher Reeve and his wife, and the legacy they left behind. Today is the 10th anniversary of his passing, and his foundation is rolling out some exciting news in the SCI world about the latest research and therapy.

My husband is not a famous actor. He's not an acclaimed director. And it's unlikely he'll ever start a foundation that will change people's lives. But he is forever linked to Christopher Reeve by the stark fact that they share the same catastrophic injury with almost identical outcomes: total body paralysis.

The main thing I take away from all this is simply that even though Christopher Reeve was an accomplished individual before his accident, he was able to continue those accomplishments - and more - even after becoming a quadriplegic.

And in that, I find hope. And the acknowledgement that there is, indeed, life after this injury.

Thank you, Christopher Reeve.

Thank you.

Photo by Timothy Greenfield-Sanders from

http://www.christopherreeve.org/

My Super Man

Our Little Helper

Evie is an incredible helper.

Helping and nurturing have always been in her nature. When she was a toddler, she would lovingly lay all of her stuffed animals on her bedroom floor for naps, then wake them up with little kisses or soft stories.

In pre-school, and even now in Kindergarten, she is always so happy when she gets to help the teacher do something like pass out supplies or clean up the classroom.

There's no doubt that her instinct to help has proven itself an coveted blessing in our new life.

Still, Jeff and I are extremely conscious of how much help we ask Evie to perform with his daily care. We desperately want to strike a balance by including her in our daily chores but not burdening her with oppressing duties.

Some days we rely on her heavily. To help when we need her. To ask her to wait patiently when Daddy needs something.

And other days we try our hardest to let her be a normal kid. To say yes quickly when she asks a question and turn our wholehearted attention to her smiling face.

Most of the time she performs her duties with a skip, and a smile. Sometimes she is in and out of the room turning the vents on and off so quickly, her presence is a blur.

Will she, as she gets older, have moments where she scoffs at us for asking her to help with Jeff's care?

Absolutely.

Will she have times of frustration and anger at not being able to do things other families can so easily accomplish?

No doubt. We've already experienced some of that.

Will she grow up knowing that her presence in our home and in our lives has made all the difference in our world? That her contributions, her sacrifices, have not gone unnoticed?

It is certainly our hope.

Soon after Jeff came home from the hospital, we decided that we would carve out some chores specifically for Evie. We have assigned her these roles in Jeff's care for several reasons. We want her to feel included. We want her to not be afraid of these duties as she grows. And sometimes, frankly, we just need her help.

Because these duties are a big part of her life.

Evie's hands-on role in caring for Jeff has not only served as a way to build her sense of responsibility, but has also strengthened the unbreakable bond between her and Jeff.

Evie and Jeff have always shared a strong father/daughter bond - from the day she was born. Last year when Jeff was injured, and out of our home for seven months, that bond was tested. My heart sobbed because Evie and Jeff couldn't physically be together during that time. The pain of the realization that Jeff will never physically hold - never physically play with - his daughter again is agonizing. It is an ache that seeps down into your bones and invades your entire body.

And no one has felt that ache more than Jeff.

I've held him as he's cried at how this injury has stripped him of his role at being Evie's big, strong Dad. I've reassured him, tirelessly, that he is just as much the father to her as he was before the accident. And since he's been home, I've witnessed an incredible transformation in their relationship that, to me, is a strong indication that that bond is indeed still intact.

But no one can convince him that he is, in fact, that same old Dad deep down inside.

No one, but Evie.

She doesn't even know it, but every day, in the little things she does, she's reassuring him.

Like when she belly laughs at the silly faces he makes.

Or when she nervously approaches him and asks him whether or not she can have dessert.

Or when, in the evenings, as my mom and I roll Jeff onto his side to remove the transfer sling, she scampers to the side of his bed and plants kisses on his puckered lips, then they both share a giggle as if they've done something ultra sneaky.

It's those times that, when Evie can just be a kid - a daughter, that we know she is thriving in this new life.

But even though she loves just being a kid, there's other times when Evie embraces her inner caregiver, and she becomes very protective over Daddy. And what she transforms into is astounding.

This happened a few days ago.

We had an intense heat wave in So Cal over the last several days. Temperatures have been in the 90s where we live. That's really high for coastal living. We don't have air conditioning in our house because, most of the time, we don't need it. So we've been surviving using fans and strategically open windows and doors to maximize cross breezes. Still, it's. been. HOT.

Jeff's body just doesn't regulate temperature the way it used to. So as the rest of us were sweating amidst the sweltering temps, Jeff was overheating without even realizing it. Jeff doesn't sweat anymore below his his neck - another side affect of having a spinal cord injury - so he doesn't usually realize how hot he is until he's miserable.

About half-way through dinner on Friday, his appetite dumped, blood pressure rose, and he had to take refuge in the coolest room he could find - our bedroom. Working quickly, I took off his shirt, wiped him down with a cool washcloth, and put the fan on him.

As I went back out to the kitchen to clean up, Evie decided she would "watch on" Daddy in the bedroom. So she kept him company as I cleaned. A little later, I was heading down the hall to get the broom from the closet, and when Jeff heard my footsteps, he said, "Kristen - can you scratch my face, please?"

I came in the room ready to put my fingernails to work, when Evie let out an "Oh!" and hopped down from the bed. "I got it. I got it," she said, and extended her arm toward me with her palm facing out - a gesture telling me to back away. He told her where the itch was, and her little fingers made quick work of it. Then she turned to me and said, "Mama. You can go back to your work."

"Are you sure?" I asked, eyebrows raised, looking at both her and Jeff.

"Yes," was her confident reply. "Go back to your work."

And she shooed me out of the room.

After sweeping the kitchen floor, I came back down the hall and put away the broom. I peeked into the bedroom, and Evie had a freshly wet washcloth, and was wiping Jeff's arms down. Then she laid it across his chest and said sweetly, "There you go, Daddy."

I caught Jeff's gaze. We smiled at each other with glossy eyes, sharing in the knowledge of our good fortune at having such a sweet, loving girl.

The next morning, she did her weekend a.m. duties of raising Daddy's head up using his bed's controller, then getting the table in place next to his bed for our family breakfast.

After orange rolls and bacon, she swapped her fuzzy princess robe for an Elsa dress and wig, and belted out a heartfelt, off-pitch, ear-splitting rendition of Let It Go in our bedroom.

She put her whole heart into that performance. Just like she does in every facet of her life.

She's a princess. She's a kindergartner. She's a helper. She's a caregiver.

She has the sweetest of hearts.

She is our daughter.

Even Queen Elsa has vent duties.