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.

A Mermaid's Tale

Last week, we pulled off a bona fide birthday party extravaganza for Evie's 7th birthday. This party had been in the works for a couple months. Evie decided on a mermaid theme, so plans began to take form for an undersea adventure.

At times it felt like we were planning a wedding rather than a little girl's birthday. But luckily, I had a party planner who took the lead for much of the hoopla: my mother-in-law. Having raised two boys, she'd never thrown a party for a little girl, so she enthusiastically took the lead on things like food, decor, and overall making sure this party had an overly abundant WOW factor. I was in charge of invitations and activities, and my mom sewed Velcro onto towels and turned them into mermaid tails for each girl. We had all the bases covered.

We decided to keep the guest list small, so Evie invited a couple girls from our neighborhood, and a few more from her school. The girls who live in our neighborhood are regular faces around our house. They ring the doorbell and wait anxiously as Evie answers and immediately asks us in an urgent, breathless voice, "Can she play?" We love the sound of Evie and her friends playing. It's a reminder for us that she's happy.

Unlike the neighborhood friends who are in and out of our house all the time, Evie's friends from school had never been to our house before.  And that means there's another thing they'd never encountered before either: Evie's dad.

I'll admit, the thought crossed my mind more than once during the party-planning stage. How will we make sure the girls are comfortable when they see Jeff? I thought, but I didn't say anything to either Jeff or Evie. I still have this fear that someone is going to one day look at Jeff and blurt out something hurtful - to him, to Evie, to us all.

But lucky for me, my fear did not materialize, because our ever-resourceful Evie came up with a solution all on her own.

A couple weeks before the party, on a random weeknight after dinner, she announced this: "I'm gonna tell my friends from school ... the ones who are coming to my party ... 'Don't freak out - my dad's in a wheelchair. And he has a tube going into his neck. But he's totally fine.'" And as she emphasized the word fine, she flicked her wrist and rolled her eyes as if having a dad on a vent is simply no biggie.

After I picked my jaw up off the floor, I told her it was a great idea. She also wanted to take a picture of Jeff to show her friends - to ease them into the situation, per se. She wanted to take one of him solo, but I told her that would be a little weird. So I asked her to stand next to him. Here's the picture she took to school to show her friends:

When she came home from school on the day she took the picture, I was filled with so many questions running through my mind. What did your friends think when they saw the picture of you and Daddy? Did they ask any questions? What did they say? What did YOU say? How did that make you feel? Gah! I was having a virtual psychotherapy session in my mind.

As Evie was emptying out her backpack that afternoon, I approached her and in a typical mom-trying-to-be-cool-and-nonchalant-but-not-at-all-succeeding manner, I blurted out, "Did you show your friends the picture of you and Daddy?"

She answered without looking at me and without stopping what she was doing, "Yyyep."

That's it? 

That's all I get?

Evidently so.

Though later that night, Evie did clarify that upon seeing the photo, one of her friends said her dad's friend is also in a wheelchair, so she's used to being around people in wheelchairs. 

Case closed. End of story. 

Like she told me earlier, No Big Deal.

And so the day of the party arrived. We had put up the decorations the night before, and my mother-in-law came over early to get all the food prepared and put out. My mom made some dip, and both Papas were running all over town picking up things like balloons, sandwiches, and cupcakes.

I got Jeff dressed and up in his chair early that day, and he was feeling good. 

And just before noon, the little mermaids started arriving. One by one the party grew until the house was filled with oohs and aahs and high-pitched giggles. The girls ate pizza, decorated mermaid tails and crowns, swam in the pool for a good couple hours, and overloaded on cupcakes.

Evie was on Cloud 9. The party was a huge success. And none of the girls seemed the least bit concerned with, bothered by, or frankly even interested in Evie's dad.

As Jeff and I watched Evie having the time of her life with her friends, a feeling of accomplishment came over me. Not because we'd pulled off a birthday party. But because we were able to give Evie something we weren't sure we would ever be able to give her after Jeff's injury. 

We gave her something normal. 

Something where we could put the demands of a spinal cord injury to the side for a few hours and focus solely on meeting her wants and her needs.

Together, with a lot of help from our family, we gave her a no-big-deal, regular old birthday party that she'll talk about and remember for a long time.

And that, my friends, is a pretty big deal.