Snippets of Evie

Oh, I could write a book on this girl.

One chapter would be about her kind heart. Another would be about the silly, imaginative stories she loves to tell. Yet another would be about how much she truly loves to laugh.

The stories would be interwoven with tales of her childlike innocence contrasted with her astounding perseverance through a life-changing event. They would show how each and every day she reminds us that despite adversity, life is good ... life is worth living ... life is love.

But since I'm not writing a novel (though this post might be just that!), here's what I call snippets of Evie - a glimpse into the delight that she is.

* * * * *

Last week, Evie decided Daddy needed a mirror on his wheelchair. So she found one of her doll mirrors - the kind with distorted, reflective material adhered to a plastic post - and strategically placed it on the arm of his chin control. She explained, "Now whenever you want to look at yourself, you can just look in your mirror, Daddy."

A few days after the placement of the mirror, Jeff had a doctor appointment, so we took the mirror off - "So as not to break it," we told her. Evie understood, but she did not forget.

Five minutes after we were back home, the mirror was quietly tucked back in its proper place.

"I put your mirror back for you, Daddy."

And it's still there.

* * * * *

In our house, we're big on those scented wax cubes that go into electric warmers and fill the air with delicious aromas. These have been a staple at the Sachs' residence for several years. Any time I would buy the cubes at the store or order them in the mail, it was always a fun family moment to open them up together and pass them around, sharing our opinions on each scent, then deciding which was our favorite.

A few days ago, I stocked up on a bunch of cubes. When Evie got home from school and found them piled up waiting for her, she was so excited. She pulled a stool up next to Jeff's chair, and said, "Okay, Daddy, let's smell 'em." She meticulously opened each one, put it to her nose, then held it out for Jeff to smell. 

I love how she always figures out a way to keep family traditions going.

* * * * *

The other day I was in the bathroom taking out my contact lenses. I was rinsing one in my hand with saline solution when Jeff called for me. "Just a sec!" I yelled as I fumbled to get the lens into the case.

Just then I heard Evie's hurried footsteps run into his room. 

"What do you need Daddy?" He was in his bed, and was starting to feel light-headed, and he needed to have this head reclined. Evie pushed the button to lower his head. As she was exiting his room, she turned back to him and sweetly chided him. 

"Daddy, whenever you need something and Mama's busy, you can always ask me." 

She turned away, then turned back again. "Always ask me," she reiterated.

"Ok, I will," he said.

* * * * *

Every day when we transfer Jeff from the bed to the chair and back, we use a Hoyer lift. It's a manual hydraulic lift with a sling attached to it that goes around Jeff's body. We have to pump a lever to lift Jeff up. Typically Evie's job during transfers is to operate the vents (which I wrote about here). But she's wanted to try "pumping Daddy up" lately. It usually takes about 15 full pumps to get him to the required, maximum height. At first, the pumps are easy peasy. But as it starts to lift Jeff's weight, the pumps become more challenging. 

Initially Evie would get to about pump number 8 and poop out. But the other day, she was determined to do the whole thing. We encouraged her as she pumped away, grunting, saying things like, "Getting heavy!" Finally, she made it to the last pump, and we all cheered. She and I did a high five. 

"I did it all by MYSELF!" she exclaimed, arms in the air, jumping up and down.

Oh, and she did it wearing Snow White high heels.

* * * * *

Evie loves to tell stories about one of her beloved stuffed animals - Big Bear. We've had him for years, but in just the last year, she has begun telling us the most wonderful, intricate stories of Big Bear's adventures before he came into our lives. Let me tell you, Big Bear is a world-traveler, has a very large family, and has lead an extremely full life thus far.

A few nights ago, Evie and I were in her bed telling stories before sleepy time, and she asked about Jeff's accident. I mentioned the word "injury" and she asked, "What does injury mean?"

I told her it means when someone gets hurt. There are minor injuries like a cut or scrape, and then there's more serious injuries, like the one Daddy had.

She thought for a minute, then said, "One time Big Bear's sister was injured. She was runned over by a car and her leg came off!"

Of course the graphic nature of Big Bear's sister's injury was shocking, but I wanted to hear more.

She continued. "And she had to take medicine that tasted like ... HOT PICKLES. But it was okay because she was asleep for 85 days and didn't even know she had the medicine. When she woke up, she was all better."

Whew. Glad she was okay after all that.

What an imagination.

What a sweet heart this little one has.

Every day she fills our house and our hearts with laughter and love.

We are blessed beyond measure.

 

Difficult Questions - Honest Answers

I've encountered this quote several times lately, and it reminds me of both the difficult questions and equally difficult answers my family has endured this last year.

Questions you never imagine in a million years that you'll have to ask. Questions you can't believe you have to provide an answer for.

Every one of my family members has had to both ask and answer these questions. I don't back down from the tough questions like I may have in the beginning. I both ask them and field them with determination. And I always answer honestly - even if my voice shakes.

. . . . . . . . . .

I remember the first impossible question I asked following the accident. I was standing in the corner of Jeff's ICU room, hugging my hunched body close to me, trembling with fear and disbelief. Doctors and nurses were getting ready to intubate Jeff with a breathing tube. He was still conscious and repeating hoarsely, "I can't breathe." His eyes were unfocused and full of panic. I looked at the anesthesiologist standing next to me and asked meekly, "Is he going to survive?"

I was met with an answer that relieved me to my core.

"Oh yes," he said turning to me and placing a caring hand on my shoulder. "I'm so sorry no one told you that. Yes, your husband will survive."

. . . . . . . . . .

A few days after the accident, Jeff lay in ICU heavily sedated in a halo traction unit with 30 pounds of weight hanging off his head in an effort to realign his cervical vertebrae and relieve the pressure on his spinal cord. We were alone in the room, and I wanted so badly to reverse what had happened to him - to us - in the last three days.

What do I do? I asked myself.

So I did something I've never done - I sang outloud to him.

We had been watching a lot of the movie Tangled at our house in the months prior to the accident. Evie and I often sang the songs together. In the movie, Rapunzel uses her magical powers in her hair to heal Flynn Rider. It turns out her tears also have the power to heal.

I thought it couldn't hurt to try with my own:

Flower, gleam and glow
Let your power shine
Make the clock reverse
Bring back what once was mine

Heal what has been hurt
Change the fates' design
Save what has been lost
Bring back what once was mine...

What once was mine.

. . . . . . . . . .

After Jeff's second surgery to stabilize his neck, the doctors lifted the sedation enough where he would be in and out of consciousness. We were alone again in his room. It was the first time he and I were able to "talk" since he arrived at the hospital. He wasn't able to speak yet, but he was able to mouth words.

I had no idea what he knew. Even though he had been conscious and talking after the accident, I didn't know how much he remembered - if he even remembered it at all.

I didn't know if he knew he was paralyzed.

He asked me two questions which assured me he knew much more than I thought.

"Will I move my arms?"

and

"Will I hold my baby again?"

These two questions were by far the hardest - to date - for me to hear and to answer.

I leaned in to him, stroked his forehead, and whispered the only answer I could.

"I don't know."

. . . . . . . . . .

Even our precious Evie has had to both ask and answer some loaded questions. I've written about them in a couple previous blog posts you can find here and here.

Just the other night, out of the blue, she asked my mom ...

"So Daddy will never walk again?" She asked it matter-of-factly. No sadness - just curiosity.

My mom was caught off guard not having anticipated the question. She answered that we all hope one day he will, but if not, he has his chair that helps him get where he needs to go.

Evie was perfectly satisfied with this answer.

. . .

In my effort to educate Evie on Jeff's injury, I believe in explaining it to her honestly. In terms she can understand, using the correct terminology. I've been doing this from the beginning. And I'm still astounded by what she's able to process.

A few weeks ago, I was attempting to explain to her what a spinal cord injury is. I asked her, "Do you know what it is Daddy has?" My question was worded strangely, so I thought I would get a puzzled look from her as a response which would then be my segue into the definition of SCI.

Instead, she hunched her shoulders, stuck out her neck, and looked up at me with only her eyes that stared from beneath her furrowed brow.

"A ventilator," she said robotically. "He's on a vent."

Translation: Duh, Mom.

I left it at that. Her learning curve is obviously coming along quite nicely.

. . .

Still, I can't help but have anxiety over the questions I know she's going to get. She starts kindergarten in a few weeks, and I don't know exactly when these questions will start coming or how they'll be worded, but I do know that it's not a matter of "if" - it's a matter of time.

I'm sure that most of the kids' questions will purely stem from curiosity. But I also think that, unfortunately, some will be rooted in cruelty. And it is my hope that when some punk kid asks Evie why her dad is different from other dads, she can school him with her answer. She's definitely got the smarts and spunk to pull it off.

. . . . . . . . . .

I don't think we'll ever stop asking or answering the hard questions. They are just a part of this new life we're living. And honestly, we don't mind them. We have to keep asking so we can keep moving forward. And we have to keep answering to pass along our knowledge and educate others.

That being said, we invite our friends and family to ask us questions. There's nothing we won't answer. Questions about our life, about spinal cord injuries, about Jeff's abilities, what it feels like to be paralyzed, or what it's like to be married to someone who's paralyzed.

Before all this, we didn't know anyone with a spinal cord injury. Now we know lots. Maybe Jeff is the first guy you know who's paralyzed. It's our hope that maybe someday when you're talking to some of your friends, and the topic of spinal cord injury comes up, you can join in the conversation by saying, "Hey, I know a guy who's paralyzed and he's pretty amazing ..."

So ask away, and we'll answer - the only way we know how.

Honestly.