Wednesday, July 27, 2016

Three Years

Today marks three years since Jeff's injury. 

I make it a point to write either on or near this date, mainly to have a chronicle of where we are - where I am - on this journey.

Year one was mostly chaotic. It was about making heads or tails of an impossibly difficult situation.

Year two was much about acceptance. Learning how to live a brand new life, and making adjustments in order to make the best of things.

And year three has been about getting settled.

Years one and two passed with about the speed I expected. Once we hit the marks, it felt like one and two years' time had passed, respectively.

But year three has been different.

It feels more like year ten.

I don't mean that in a bad way necessarily. It's just that so much has happened this year. But despite a couple hospital stays and a pretty nasty bout with pneumonia, most of this long year has been good. We've settled into our new home in a new city and a new state quite well. Evie has thrived in school and has made new friends. 

We've developed a routine that works for us.

And it's that routine, the thing I love, the thing that keeps this whole crazy train from falling off the tracks, that demanding checklist that waits impatiently for me every morning to start ticking off items ... it's that routine that has been weighing heavy on me lately.

It's also that same routine that I recently got to see in a manner quite unexpected.

A few weeks ago, a friend who lives a nearly identical life to mine shared a music video on her Facebook timeline. She wrote how a friend of hers shared it with her - how it reminded him of what her and her husband's routine must be like. Of the video my friend wrote, "What a powerful little four minutes." 

I don't follow music much, so I wasn't surprised that it was a song I didn't recognize from an artist I'd never heard of. But I was intrigued by my friend's comment, so I clicked the play button on the video. 

And there, on the screen, I began to see my daily caregiver routine unfold. A woman was taking care of her quadriplegic husband. She was doing things like getting him out of bed, bathing him, loading him into the car, and feeding him. You could see both the love and the exhaustion mixed together on her face.

And these were the words ...

And I'll rise up
I'll rise like the day
I'll rise up
I'll rise unafraid
I'll rise up
And I'll do it a thousand times again

And I'll rise up
High like the waves
I'll rise up
In spite of the ache
I'll rise up
And I'll do it a thousand times again
For you

I watched that video in teary silence. And those words rang in my ears for days. Each day as I would wake up and face my daunting routine, I was encouraged by those words to rise up ... unafraid; rise up ... in spite of the ache. And how I will do it a thousand times again ... for the man I love.

Fast forward to yesterday, the day before the anniversary of Jeff's injury. After dinner, I found myself with both a little time and energy, and I knew there was some organizing that needed to be done in the garage. So I left Jeff in the living room parked in his chair watching the Democratic National Convention, and I headed to the garage in the early evening heat. I rearranged boxes, grunted as I lifted them onto shelves, and wiped the sweat from my face.

I took a break and went back into the house. And as I was walking over to Jeff, I heard familiar words coming from a beautiful woman performing on the convention stage:

And I'll rise up
I'll rise like the day
I'll rise up
I'll rise unafraid ...

My mouth dropped open. "This song!" I said, my voice cracking with emotion.

"What about it?" asked Jeff. I hadn't even mentioned anything to him.

So I told him briefly about the video. How I was so moved to see our life - our routine - portrayed in it. 

We watched the performance in silence.

And then, as Andra Day began singing the last part of her powerful song on that stage, I heard, for the first time, the change in the lyrics.

It was no longer I. Now it was We

And we'll rise up
High like the waves
We'll rise up
In spite of the ache
We'll rise up
And we'll do it a thousand times again
For you

It was like everything clicked into place. On the eve of Jeff's injury anniversary, hearing this song performed so eloquently, I was reminded that this is OUR routine, not just mine. How we rise and face each day together, never separately - no matter how tired we are, or how much our bodies may ache. 

And how we will do it a thousand times again. For each other. Always. 

As much as I would love to erase July 27th from the calendar, this day is now a part of us. Part of our history. 

It was the start of our new life, and it will forever be a milestone marker on our journey.


And if you'd like to take a look at Andra Day's video for "Rise Up," featuring a glimpse into the routine of a quadriplegic and his caregiver spouse, here it is via YouTube:

Monday, July 18, 2016

Coming Soon ... Quad Cuisine Segments

Jeff and I have started cooking together more in the last several weeks. He finds recipes online - or just creates them in his head - then he tells me step by step what to do, and I do it.

Here's a visual of the process:

Jeff gives instructions to me - I drink wine and cook - and somehow it produces a meal.

And that's how we make food together.

It's worked out surprisingly well so far. We've whipped up some pretty tasty meals.

I know that cooking together doesn't sound like much of a big deal. Lots of couples do this, right? Most people have at least some skill when it comes to navigating a kitchen, right?

Well in case you don't know the history of me in the kitchen, let me sum it up for you:

There is none. It doesn't exist.

Me and cooking have just never really gotten along. It's something I never was really interested in, and therefore something I never pursued.

Besides, I had a husband who could cook. Who loved to cook. Who loved to turn on music on the weekend, throw back a few cocktails, and churn out some delicious eats.

Well, that is until he was paralyzed and could no longer move his arms.

This isn't necessarily a new topic for the blog. I've written before about my first time ever barbecuing. How Jeff had to instruct me on how to turn on the barbecue. How to not be afraid of the flames. How to keep the barbecue lid shut when I kept wanting to lift it and check on the meat. How and when to flip the meat. How to carve it.

And he's done all of this without any physical demonstration. He's verbally walked me through every single step.

He is immensely patient.

I've become pretty confident on the bbq, at least in terms of turning it on and not being (too) afraid of the flames (my first time bbq-ing hamburgers was eye opening!) I handle the physical stuff and Jeff handles all the other details, like temperature and timing.

But things have been a little different for us lately in terms of cooking. We've started to do more stove top cooking. We're spending more time in the kitchen together. And I've noticed a change in Jeff. He's becoming interested in preparing meals again. He bookmarks recipes and makes up his own. He gives me an overview of what's on the meal agenda, then he breaks it all down step-by-step. He is really good at coaching me through a technique I've never attempted before (which is most of them), and he's playing a big part in helping me build up my culinary skills.

And the best thing is that we're both enjoying it.

So when we were in the kitchen discussing dinner a couple weeks ago, I told him that I think this would make a good segment on the blog. We've found a way for him to be a part of something he used to love doing before his injury. Except of course now his disaster-in-the-kitchen wife is the one wielding the utensils. Who wouldn't love that?

He joked that we could call it Quad Cuisine.

Which, of course, he immediately regretted, because it's all just too perfect to pass up.

I even made a fun little logo:

And so I've begun documenting the adventures of a cooking quadriplegic - whose family comes together to make fun, yummy meals. And from time to time, I'll share them on the blog.

Jeff always wanted me to cook with him. He used to say, "Let's make dinner together tonight."

And I never wanted to. And so, in our old life, we never did.

But now, in our new life, we do. We have to. Just not in the way he'd imagined.

But it turns out that our new way of cooking isn't all that bad. He needs me and I need him. And that combination is proving to be a pretty great thing.

Here's a little preview:

Thanks to my father in law for taking this one!

My selfie stick is coming in handy!

Even Evie is developing her skills in the kitchen. So far, pounding the chicken is her favorite.

More to come soon!!

Sunday, July 10, 2016

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.