Sunday, August 20, 2017

Our Anniversary - Reflecting and Rebuilding

Today is our anniversary.

Twelve years ago, Jeff and I got all dressed up, hopped on a yacht in Newport Harbor, and invited some family and friends to celebrate our commitment to one another.

I offer you my solemn vow to be your faithful partner in sickness and in health, in good times, and in bad, in joy as well as in sorrow. ... I promise to cherish you, honor you, and to respect you for as long as we both shall live.

Eight years after we said these vows, my husband was paralyzed from the neck down while diving into the ocean.

And now four years later, we are still rebuilding our lives.

When I think about the phrase 'faithful partner in sickness and in health,' I think about what that meant to me 12 years ago. I am embarrassed to say that back then, I thought it meant something like nursing my partner through the flu. It definitely didn't mean anything close to what it means to me today.

I am my husband's caregiver. As a high level quadriplegic on a ventilator, he requires 24-hour care and assistance. While technology has been instrumental in allowing him independence in some capacity, the truth is that he still needs help with almost every single task throughout any given day. And it's my job to provide that assistance.

As a spousal caregiver I often come across the question of "How do you separate being a spouse and being a caregiver?" This is a big topic in the spousal support groups I belong to. One thing I've learned in being a part of these groups is that no one's situation is exactly the same. And everyone has to find what works for them and their partner. I learn from and respect each and every approach. Because figuring out what works and implementing a caregiving plan is a difficult and complex task.

But for me, when asked how I separate being a spouse and being a caregiver to my husband, my answer is simple:

I don't.

Because I'm not either a wife or a caregiver.

I am a wife and a caregiver.

I'm not one or the other.

I am both at the same time. Always.

Because when I'm cleaning Jeff's trach, we're talking about our daughter's school. I have my headlamp on and I'm gloved up, and the rolling table set up next to his bed is stacked with gauze, saline, Q tips, and ointment. And my husband and I are talking about setting up a weekly homework schedule for our third grader.

Because when I start his breathing treatments in the morning, we're already talking about what we'll do for dinner that evening.

Because when I'm transferring him from his wheelchair back into bed and trying to get the sling out from under his body, he is being silly and making me laugh so hard that it takes me three tries to successfully get the sling out.

Simply put, me being my husband's caregiver works for us.

"I truly don't think I could get through this with anyone but you." 

My husband recently said these words to me after we'd been through some difficult days together. And it's one of the best compliments I've ever received.

Jeff and I have developed a bond over the last four years that is hard for me to accurately put into words. It is built on deep trust and respect for one another that developed as a direct result of the trauma we went through as a couple when he was injured.

His injury caused a tsunami that forever changed the landscape of our life. And we are fortunate that we've been able to hang on to one another as the waters receded. We've worked together to make sense of the leftover chaos and have begun to build our life on top of the wreckage.

But it hasn't been all fortune and luck that have gotten us to where we are.

It's been a lot of hard work and sleepless nights. And an endless amount of grace. We've had to learn to allow one another space to be angry with the turn our life has taken without taking it personally. We've had to accept that each one of us copes in our own way and we've learned to support one another within those parameters. We've consoled one another, we've delivered more pep talks that I can count, and we've both taken turns being the bad cop when it was time for the pity party to end.

Our life hasn't turned out the way I imagined it would on this day twelve years ago when we said our "I dos." Back then, my idea for our future was so simple and idyllic. It involved working, raising our daughter, retiring, then traveling. Instead, I feel like we boarded a rocket, were launched into space, and crash-landed on a distant planet.

But it turns out this planet is liveable. Yes, there's some harsh terrain and surprises waiting to challenge us, but there's also rich soil where we can plant some new dreams and watch them grow.

I wouldn't want to navigate this new world with anyone but this guy.

Tuesday, August 15, 2017

"My Dad is Paraliced"

As summer vacation was winding down, Jeff and I would talk to Evie about her upcoming school year. We asked her what she was most excited about ("Getting to play on the big playground this year!"), we asked her which of her friends she couldn't wait to see ("All of them!"), and what she was looking forward to learning about ("Art!").

We were doing our parenting best to build her up for the coming school year because we had a bit of a rough exit last year.

Jeff had been in the hospital for a week last May. Evie stood with her grandparents and watched as an ambulance took her sick Dad and her worried Mom to the hospital. It was a very anxious time for all of us, and Evie's anxiety spilled over into her school days. She suddenly didn't want to get on the bus - something she'd always handled so well. And the first half hour of school was spent in tears with friends rallying around her.

We were hoping for a better start to the new school year.

A few nights before the first day, I was putting Evie to bed, and she said to me, "I don't think I want to tell my new class this year that Daddy is paralyzed."

I was caught off guard. "Why not?" I asked.

She shrugged her shoulders in an I don't know gesture. "I just don't," she said quietly.

"That's okay, Sweetheart. You don't need to," I told her gently. "But sometimes you might have to talk about it - or at least mention it," I continued. I gave her an example. "What if your class is talking about the jobs your parents have? That might be a time that you would explain that your dad is disabled and your mom takes care of him."

She nodded.

"And remember, you don't have to tell everyone the whole story," I reminded her. Because she has. All in about 20 seconds, in one breath, talking 800 miles per hour, starting with "One day we went to the beach," and ending with "and now my dad can only move his head." Yikes. Talk about overwhelming - for her and the person on the receiving end of all that.

We said goodnight and left the topic there.

A couple days later, she and I went to the school and met her teacher, and an opportunity arose to let her teacher know about our special circumstances. As we were leaving the classroom, the teacher stopped us and asked if I would be able to volunteer in the classroom or if I would be busy during the day. I seized the opportunity.

"Evie's dad is a quadriplegic," I said. "He's paralyzed from the neck down, and I am his caregiver. So as much as I'd love to come in regularly, I won't be able to." The teacher understood. Then Evie piped up and said that maybe her dad could come in one day like he did for the parent teacher conference last year. The teacher smiled and said she looked forward to meeting him.

We said our goodbyes and headed toward the exit. Evie was relieved that her teacher now knew about her paralyzed dad and that it wasn't a big deal.

Fast forward to yesterday - the first day of school.

Evie came home, announced she'd had a GREAT day, answered our questions, then began unpacking her backpack. She pulled out a folder stuffed with flyers for parents to read and sign. Then she brought out a crumpled up piece of paper that had been re-flattened out, and said, "Oh, today I told my class that Daddy's paralyzed."

"Oh wow," said Jeff.

"You did?" I asked with surprise. "What did you say?"

"I wrote it on a piece of paper," she explained. "We all had to write three things about us, then we crumpled up the papers and played snowball fight."

The good ol' getting-to-know you activity.

I looked at the paper she brought home. And just beneath "I love rainbows and unicorns!" and "My favorite stuffed animal is Uni," were the words, "My dad is paraliced."

She just smiled at us from ear to ear.

Later that evening I asked her what some of the other kids wrote on their papers.

"Things like 'I have a dog' or what their favorite color is," she said. Then she paused. "No one wrote something like me."

"How did you feel about telling your class?" I asked.

She gave me the thumbs sideways gesture.

"Kind of in between," she said. "I didn't know we were going to read them out loud. I thought it was just for the teacher."

"Did anyone ask questions?"

"Yep, one person said 'What does paralyzed mean?" and I told him it means you can't move anything."

I told her she did a great job.

I told her that I know talking about Daddy's injury is sometimes uncomfortable, but it's never anything to be ashamed of or embarrassed about.

I reminded her that before Daddy's accident, we didn't know anyone who was paralyzed. We didn't know anyone who used a wheelchair. And that when her classmates ask her questions, it's probably because they've never met anyone who is paralyzed either. And they're curious. And when we answer their questions, we help them understand a little about what it's like to live our life.

I told her I was proud of her.

* * * * *

Jeff and I - like so many other parents - want to prepare our child the best way we can for life. We want to use our experiences to help her with hers.

But when it comes to living with paralysis, all three of us - Jeff, myself, and Evie - all experience it from a different perspective.

Jeff and I don't know what it's like to have a paralyzed dad. But Evie does. And this is one area where we have to let her take the lead.

And she may not be able to see it now, but she teaches us something new every day.