A Lesson in Perspective

per-spec-tive: A particular attitude toward or way of regarding something; a point of view.


As individuals, we all bring a unique perspective to every situation we encounter. The way I see things isn't always the way others do. I recently experienced an eye-opening lesson in perspective - one that I would like to share here.

It all centers around this image:

My friend Kylie, whose husband has a spinal cord injury similar to Jeff's, recently snapped this image of her husband and their daughter. Kylie's husband Maciu was injured in 2015 in a rugby match. He recently underwent tendon transfer surgery in his right hand and nerve transfer surgery in both arms to help with hand and finger function. As he recovered, his sweet daughter, Ariella, helped feed him.

As soon as I saw this image, I immediately identified with it, having taken so many similar ones of Jeff and Evie myself. These moments happen fast, and I've learned to carry my phone with me always. I've become adept at whipping it out of my back pocket, pressing the 'quick pic' camera icon on the screen, and snapping away.

I stared at Kylie's photo with a little smile on my face. Look at the way Ari is helping to feed her dad. Look at her adorable grin.

The picture is just so stinkin cute!

So I decided to show the picture to Jeff - so we could both experience the sweetness. I told him I had a cute picture to show him that a friend of mine posted. I brought my phone over to him, and flipped it around.

He focused on the image. He didn't say anything at first.

Then he nodded slowly. Silently. And a couple seconds later he said, "I know just how that guy feels."

What? Where was the oohs and aahs and the That's so sweet! And in looking back on this, why did I truly expect my husband to say those things? But the truth is I did expect it at the time. And what I got was very different.

So later that day I showed the picture to Evie. I introduced it to her the same way I did to Jeff. And when I showed her the image on my phone, she immediately said, "Awww!"

Finally, someone who could see things from my perspective, I thought.

Then she immediately said, "I like her robe."

What? Her robe is the thing you noticed in this picture? My mind was reeling.

But my mouth said, "Yeah, it's cute, huh."

"Yep," she chirped. Then she went along her merry little way.

I stood there alone feeling a bit defeated at this whole picture sharing/bonding attempt that I was clearly failing at.

Why can't they see what I see in this picture?

The answer didn't hit me right away, but once it did, I felt stupid for not realizing it sooner.

When we each looked at the picture individually, we were identifying with the person whose role is most similar to our own.

When I saw the picture, I saw it from Kylie's point of view. From the wife of an injured spouse. From the mom of a child who often has to slip into the role of caregiver for her paralyzed dad. From the family historian whose job it is to document these bittersweet moments to both share with friends and family, but also to remind herself that they are making the absolute best they can out of a really sucky situation.

That's how I saw it.

When Jeff saw the picture, he saw it from Maciu's point of view. He identified with a man in a vulnerable position. When he said he knew how this guy felt, he wasn't just talking about being paralyzed. He was talking about how he knows what it's like to have to be fed by someone else - he understands all the implications of what it means to have to be fed by your child - a child he used to feed.

That's how he saw it.

And when Evie saw the picture, she saw it from Ari's point of view. She saw a cute little girl with a beaming smile wearing a fuzzy white robe with pink stars. And she just happened to be feeding her dad.

That's what she saw.

And it was only when I took a step back that I could see how it all came together.

Looking back, trying to get my husband and daughter to see this picture from my perspective was selfish. And expecting them to have the same perspective as me was naive.

We each play a different role in this life. We each see this life a little differently.

This is something I plan to remember as we continue on.

But no matter how you see things - what your perspective may be - I think it's pretty universally clear that the bond between these two dads and their daughters is a pretty special one.

A huge thanks to Kylie for allowing me to share these photos and this story. These encounters - these shared experiences - are mutually beneficial to the families living this life. It's comforting to know we're not alone.

If you would like to learn more about Kylie and Maciu's journey, you can follow along on their Facebook page: 4Matty.

Father's Day and Moving Forward

I vividly remember the first time I put the search terms "quadriplegic father" into my phone, hoping to find pictures, articles, anything that could give me hope that Jeff and Evie would eventually settle into - and hopefully thrive in - their new father/daughter relationship.

It was two months after Jeff's accident, and he'd just been transferred to a spinal cord injury rehab hospital. He was still in the ICU there, and I spent every night next to him in a horribly uncomfortable chair. I didn't sleep much, so most nights I searched for practical things like ramps and mobile assistive devices that I had come to realize we would need for the rest of our lives.

But this night was different. I found myself stuck on the subject of Jeff and Evie. A father and daughter whose relationship would inevitably be altered due to this horrific turn of events. Questions like Will Evie accept a dad who is paralyzed and in a wheelchair? And How will Jeff parent Evie when he can't even move? haunted my thoughts.

So with anxiety at what I might find, I searched "quadriplegic father" on Pinterest where I'd been building up a board titled Spinal Cord Injury to save articles related to the subject. The results came up, and I began scrolling. At first, nothing looked too promising.

Then I found this: My Dad & Quadriplegia: A Daughter's Perspective, an article by Brittany Martin. Brittany's dad, Paul, had been injured in a car accident when she was 12 years old. At the time of Brittany's writing, her father had been a quadriplegic for 15 years. Brittany wrote about learning what a spinal cord injury really meant. She wrote about processing that information then eventually accepting it. She wrote about the dark, early days just after the injury and about how her family eventually made the transition to incorporating her father's quadriplegia into their lives:

As my dad transitioned home, we discovered new activities we could share and adapted the old ones we used to enjoy. Family soccer games and “roll and strolls” through the neighborhood are some of our pastimes. I also know now that my dad will roll me down the aisle, and we will certainly dance at my wedding.

By this point in the article, I was reading through a flood of tears. I had so many emotions come to the surface all at once and spill over onto my cheeks. But the emotion I remember being at the forefront was a great sense of relief. That - my god - there was real hope that this father/daughter relationship could actually work out afterall. I remember the photo that accompanied Brittany's article - of her kneeling beside her dad, her hand resting on his knee, and the smile on both their faces. They looked comfortable. They looked at ease.

They looked happy.

I couldn't wait until we could incorporate that feeling back into our lives - until Jeff and Evie could look at one another again and feel that same way.

I'm so glad those heavy, dark days filled with so much uncertainty are behind us.

I've had the privilege of watching - and documenting - Jeff and Evie's relationship re-develop and change over the last three years. I've witnessed an astonishing amount of resiliency in both of them as they've been forced to make room for quadriplegia in their relationship.

And to showcase how they have adapted and evolved in the way they interact and play together, I put together this two-and-a-half minute video for Father's Day. Take a look:

It makes me so happy to see these two playing, smiling, and laughing together. Because those are some of the milestones we use to move forward in this life.

But make no mistake, even when we're moving forward, there's still a lot of grief and sadness on this path. Even when we come to a clearing where we're happy and thriving, moments later we can unexpectedly find ourselves in a tangled jungle of missing the life we used to have.

When I was putting the video together of Jeff and Evie's Basket Pull, Evie came into the office to watch me. Together, she and I watched the videos of Jeff pulling her in the basket when she was a baby. She marveled at her cute, younger self and her high-pitched toddler giggles. She watched as her big, strong dad turned a flight of stairs into her own personal roller coaster, and she laughed.

But then she got very quiet. She turned her gaze downward, and came in close to me.

I was so caught up in the video, knowing that it was about to transition to clips of them playing in the present, that her soft words caught me off guard.

"I wish Daddy wasn't paralyzed."

The cracks in my heart deepened. I turned down the volume and let the video play on in silence. I wrapped my arm around her - something that Jeff never stops wishing he could do - and I whispered, "Me too, sweetie."

And with those words, our clearing was enveloped with tangled vines. With memories of an old life that, when looked at through the lens of this new life, seems to have been merely a dream.

We stared at the silent video playing on the screen. Jeff was pulling Evie in a laundry basket behind his wheelchair, and she was grinning from ear to ear.

"But Daddy can still play with you now," I said quietly. "Just in a different way."

"Yep," she chirped. And she shrugged off the tangled vines and skipped out of the office.

So much about moving forward in this life is dealing with the hard stuff. It's about being enveloped by that tangled mess of vines and making a conscious decision to fight our way out rather than succumb.

We choose to move forward. Not because it's easy. Not because we want others to marvel at us. Simply because we want to keep on living.

And so those questions I fretted over when Jeff was still in ICU have been answered over the last three years. Will Evie accept a dad who is paralyzed and in a wheelchair? The answer is Yes. It's certainly not always the easiest thing to do, but she has. How will Jeff parent Evie when he can't even move?  I take the answer to that one from a previous blog post I wrote: Being able to touch your children doesn't make you a good parent. Being able to connect with them does.

And the connection between these two is crystal clear.

Happy Father's Day to my amazing husband. I've known you as an able-bodied father and as a father with a disability. In truth, there's no difference. You love our child with the same heart. You discipline with the same firmness and you praise with the same abundance. For this and so much more, I am grateful for you.

xoxoxo

p.s. Regarding Brittany and her dad ... in case you didn't know, a couple years after she wrote that article, her dad did indeed wheel her down the aisle - and he danced with her at her wedding in a big way.

One day, I'll write about Evie and Jeff doing the same thing.