Sunday, July 25, 2021

The Sunflower and the Cactus - 8 Years Living with a Spinal Cord Injury

Back in early spring of 2013, we decided to spruce up our backyard. We bought heavy bags of wood chips that Jeff heaved in from the garage and spread underneath the trees lining our little enclosed backyard patio. We also bought two wooden planters that we filled with soil. And I can remember kneeling down with little Evie, who was still in preschool and going to turn 4 soon, and we planted sunflower seeds.

We'd never planted anything before, so we were very excited to watch the sunflowers grow. Evie's patience waned, but I was diligent in checking on those flowers. When the buds started to peek through the soil, I called Evie out so we could ooh and aah at nature sprouting right before our eyes. Within a couple months, we had pretty good size stalks, and by summer, we could see that the flowers would be opening soon.

I would check them every single morning. 

Then one day, July 25th to be exact, one of our sunflowers burst forth. It was almost entirely open, with just a few petals that still needed to stretch out. I snapped a photo before I left for work that day, and I posted the image on Instagram with the caption: "Our sunflowers are starting to bloom!" I was so excited.

Two days later, we went to the beach with friends, and Jeff was paralyzed diving into the ocean.

And just like that, I never thought about those sunflowers again.

In the blink of an eye, everything, every-thing changed. What used to be important to us, what used to make us happy, no longer mattered. We were handed a new set of responsibilities to prioritize that day, and that list definitely didn't include growing sunflowers.

I remember going out in the backyard a couple weeks after Jeff's injury, when I was home briefly with just enough time to shower, pack new clothes and grab some food before heading back to spend another impossible night with my husband in the hospital. I walked out the back step and looked around. Everything seemed so bleak in the waning light of the evening. It was like all the joy had been sucked out of what used to be a place filled with life. Our life. A place where just a week prior, we'd hung twinkling lights on the canopy. Where Jeff had meticulously run a cable from our bedroom out to the patio and connected it to a TV in preparation for watching football while he grilled us dinner. A place where Evie chalked sweet figures on the concrete and ran through the sprinkler giggling.

I turned to see the sunflowers, and they were all wilted, bent over, dry. Completely dead. I didn't even try to salvage them, which would have been impossible anyway. But more than that I remember thinking what's the point? I'd already learned that we'd need to move as soon as possible. The condo we rented wasn't anywhere near accessible for the wheelchair Jeff would need to get around. All of this - all the stuff in our backyard - would need to be stored or sold. It was too much for me to mentally wrap my mind around in the moment. I stepped back in the house and closed the door on our old life.

Because that's what that sunflower was - our old life. Days before everything changed, it was all going so good. Jeff and I had great jobs, we had a happy, healthy daughter, we had friends we hung out with on evenings and weekends, we had everything.

But now that life was gone. 

Yet somehow, through all the difficulty and challenge, we've managed to grow a whole new life. 

Year eight hasn't been easy, which has honestly been a surprise for me. You'd think that having eight years of SCI life under our belts, we'd be pretty good at it. And we are. But this year presented quite a few speed bumps. Last summer Jeff developed a pressure sore which kept him in bed for seven months, and turned me into a wound nurse. Those months of bed rest and constant wound monitoring were very difficult for us both. Jeff missed every holiday last year, just like he had the first year. Evie and I decorated for Halloween, Thanksgiving, and Christmas, and he didn't see any of it in person. And the stress of the wound and so much of the healing responsibility belonging to me almost broke me. It certainly caused me to hit an all time low as a caregiver, which I'm just now climbing out of with the help of some self-care and self-reflection on the stresses I've had to carry the last eight years.

Through all of the ups and downs, the one thing I can honestly say that hasn't disappeared from our old life - the one thing that has actually grown stronger - is the love between me and Jeff. I am so thankful for who he and I are together. How we have pushed through even the darkest of days to find light again. How we've refused to let a shitty situation destroy us.

Sometimes I think about our old life - that sunflower - how beautiful it was, and how we'll never have that again. But I'm quickly reminded that there's still beauty to be found in our new life as well. 

Just this past spring, Evie and I tried planting seeds again. We'd picked a spent flower from a barrel cactus and opened it up to find hundreds of seeds inside. We planted several in the front yard and in the back yard. And even a few in little pots that we put on the windowsill in the kitchen. And just like the sunflowers, I checked those seeds every day. For so long I didn't see anything. Then something happened. Jeff was hospitalized, and of course I was by his side the whole time. And I forgot all about those seeds. So imagine my complete surprise when after 11 days' absence, we came home to find that one of those seeds had sprouted. And a tiny little barrel cactus bud was pushing up out of the dry soil, resilient and strong. 

Just a little reminder that life still finds a way even through the harshest of conditions.

Here's to 8 years!

Year One

Year Eight

Friday, May 14, 2021

A Caregiver's Struggle

 This picture was taken earlier this week when I took our daughter to an outdoor mall for her birthday. She was beaming - so excited to be spending time outside the house with mom who was poised and ready to spoil her for her 12th birthday.

And while my smile is genuine, there's a lot hiding behind it.

Earlier that morning, my husband woke up in extreme pain from a stomach issue that has recurringly plagued him for the last several years.

An hour before Evie and I left for our outing, Jeff looked at me and said, "We're probably going to have to go to the hospital this evening." I nodded silently, closed my eyes, and walked out of the room.

This is going to sound horrible, but I was pissed. Every other year since 2017, Jeff has been in the hospital on our daughter's birthday. And it looked like the cycle was going to continue.

I mentally began to prepare myself for the hours ahead: spend time at the mall with Evie, come home, immediately pack for the hospital (there's A LOT to pack for a ventilator dependent quadriplegic), maybe shower if there's time, wonder if the hospital is even going to let me in, should I call an ambulance or try to get Jeff into his chair and drive him there myself? Once they realize he can't pay, they'll have to let me in, right?

With all these questions swirling around inside my head, I set off for the mall with Evie while Jeff's parents stayed with him.

I snapped the picture above right when we got to the mall. We were walking in and were both so excited to spend time together shopping (even though I loathe extended amounts of shopping, it was worth it since I love my daughter). But behind my smile in this picture is all the worry of the morning. All the anticipation of what's to come. All the disappointment that my daughter's birthday might end with mom and dad in the hospital.

I texted Jeff every hour while I was away. At one point I got a text from him asking where some medication was. After sending instructions on where his dad could find it, they still couldn't locate it. So I asked, "Do you need me to come home?" I was met with a "No" answer and that they eventually found the medication. Still, I was rattled. In the middle of Old Navy, trying to find my daughter some new jeans that fit her properly, my worry for my husband was running over.

After several hours out with our daughter, plus a stop at the grocery store to pick up a cake, we made it home where I immediately switched into caregiver mode. Jeff informed me that since he didn't feel worse than earlier that morning, he didn't think we would be heading to the hospital. 

We were both able to breathe a little easier.

The next day he felt better.

The following day he felt worse.

And now it's today. He still feels like crap. And it's Friday, so I have to round out the week with homeschool as well as care for a quadriplegic who's in constant pain.

Evie and I made it till 10am before I had a breakdown. Summer is looming, and Evie's got a major case of senior-itis even though she's only in 6th grade. Combine that with a quad dad whose pain I absolutely cannot fix, and you've got one caregiving mom who blows her top.

Being needed is a wonderful feeling. Being torn between the complex medical needs of a quadriplegic spouse and the educational needs of a reluctant pre-teen daughter is not.

And at 10 am this morning I was SO. FUCKING. OVER. IT.

Maybe it's the time of year - as a first-time homeschooling mom, I've never been so excited for summer. Maybe it's 8 years of caring for my paralyzed husband. Maybe it's the pandemic.

I'm pretty sure it's all of it.

Today was not a good day. I cried off and on, which I rarely do. I teared up while making dinner, which I never do. I've been in a funk all damn day.

Jeff and I are awaiting our second shot of the vaccine, and we've been talking about how excited we are to finally be fully vaccinated. And as pro-vacciners, we are. But sometimes I wonder ... why? It's not like we're going to suddenly start going out once we're vaccinated. My husband hasn't gotten out of bed in a week because of his pain. For every five days of pain he endures, he gets one good day - sometimes only several hours - in return. 

What kind of life is that?

If you are among the people who are counting down the days until your favorite restaurant re-opens so that you can be there when it does, what you should be counting is your lucky stars. That means your normal is about to return.

But when my normal returns, my husband is still going to be paralyzed. And probably still in pain. My daughter is still going to need all the attention of her mom who can't adequately give it to her. And I'm still going to be stuck playing monkey-in-the-middle to both of them while marginally succeeding at maintaining my own sanity.

At this point, I have no desire to go out to a restaurant. I just want to sit out in our backyard and enjoy the evening breeze with both my husband and my daughter. I don't think this is too much to ask. So why is it so hard to achieve?

This blog post isn't happy. It doesn't have the life lesson or the positive wrap up I usually put on it. But it is 100% honest. And sometimes honesty is all I've got. 

I'm not looking for sympathy or encouragement or anything like that. I think I just needed to use my blog space to get some stuff out. To acknowledge a series of bad days. To be real and authentic about what it's like to be a spousal caregiver who is also a mother, a teacher, a problem solver, an individual.

I know things will get better. I'm sure we'll find something to laugh about tomorrow. 

And that will go a long way.