Tuesday, October 24, 2017

Forging New Friendships


It all started with a simple suggestion ...

We should all get together sometime in Vegas.

I had met Monica and Andrea in an online support group for wives and girlfriends of quadriplegics. Their husbands, Glen and Chad, are both high level quads like Jeff. The also both have one daughter, and all three of our girls are only 8 months apart in age.

The similarities are clear. So it's not surprising that the three of us - me, Monica, and Andrea - all struck up a friendship. Our girls started writing letters to one another. They even had video chats so they could talk to one another face to face.

And I would chat with my new friends over Facebook messenger.

That's when the idea of meeting in person first came up.

Here's the actual conversation:

Monica: I seriously was telling Glen last night that we need to plan a group trip to Vegas. Kristen, I know you said you guys are not thrilled to fly and we've never been to Vegas! Who's in?

Andrea: We have been to Vegas. I'd go again if I didn't have to endure walking the strip.

Kristen: We would LOVE to have you come visit us!

And so the planning began.

Before long, flight reservations were made and hotel rooms were booked.

And the excitement levels began to rise.

Both visiting families - one from Pennsylvania, one from Minnesota - flew out to Vegas several days ahead of when we all planned to gather at our home. Monica, Glen, and Elaina headed to Yosemite while Andrea, Chad, and Mari explored the Grand Canyon. When they headed back to Vegas, we realized we would all be available the evening before we planned to get together, so we decided to have dinner together at the hotel they were staying at, which was just a few miles from our home.

***

Jeff, Evie, and I waited near the cafe at the hotel. We were all smiles and jitters. We waited for our new friends to come down from their hotel rooms and meet them in person for the first time.

"Which way will the come from?" Evie kept asking.

"I'm not sure, Sweetie," I answered. "Just be on the lookout for two power chairs."

And soon enough, through the throngs of people, we could just make out those chairs - with two men sitting in them - coming toward us. Their wives walked on either side of them, and a few steps ahead were two little girls holding hands. They were making their way toward us.

Evie was like a race horse. My hands on her shoulders were the gates holding her back. She was trembling with excitement.

Finally, when the girls were close enough, I let go, and Evie flew to them. The moms followed suit with hugs all around, and the dads all did their quad nods to one another.

And there, in the crowded casino of a Las Vegas hotel, the bonds of a unique friendship were forged. There must have been a million eyes on us that evening. Three quadriplegics in power wheelchairs pulled up to a long table on the cafe patio. Three wives helping their husbands to varying degrees with their dinner and drinks. Three little girls sipping root beer and chocolate milk, giggling their way through their meals.

It was a perfect way to kickstart our friendship.





***

The next day, in the early afternoon, we all met up again - this time in our home where we could relax and hang out away from prying eyes and loud background noise.

The girls immediately stuck to one another like glue, and seemed to move around the house as a unit. They occupied themselves with such things as tea parties, karaoke, splashing in the spa, painting toenails, and sneaking snacks. Suffice to say they were in heaven.

The couples spent their time getting to know one another. We compared wheelchairs and gadgets that have become part of our everyday lives. The guys swapped injury stories with nods of understanding. And thanks to Glen, we got to hear some harrowing post-injury injury stories - as if the spinal cord injury weren't bad enough!

Monica and Andrea shared what it was like to fall in love with their husbands, as both women met their husbands many years after they were injured. I shared what it was like to go through the trauma of the injury with Jeff and the way our life abruptly changed.

The topics ranged from funny to solemn - from shocking to serious.

As we talked, I watched how these women moved around their husbands. How they helped them with things like taking a sip of a drink or putting food in their mouths, or helping them put on a sweater. How they did it all without missing a beat in the conversation. And I realized that this is what I must look like when I'm helping Jeff. It was my first time seeing the dance from the outside - seeing how husband and wife move together as a synchronized unit.

It's something I'm glad I got to see from a new perspective.

We gushed about the lights of our lives - our daughters. We talked about parenting issues that every parent can relate to. And we talked about parenting issues that only quad parents can relate to.

We took time to snap some photos of this incredible experience.

Monica even brought shirts for the moms and the girls. Here's what they say:

Here's to strong women
May we know them
May we be them
May we raise them





It was both relaxing and energetic at the same time. Our conversations just flowed. Nothing was forced.

We were immersed in an environment where no one stood out. We all just blended in. And believe me, blending in as a quadriplegic family is something none of us were used to. But all of us welcomed.

Later in the evening, we were treated to a visit by yet another quad couple - Claire and Kenny (yes, THAT Kenny from broken wheelchair fame!) Claire is also part of our online support group, and knew about our plans to get together. She and her fiance Kenny happened to be in Vegas for a conference at the very same time as the other families! Their arrival was the icing on the cake.


Our house was so full! Full of hugs and laughter. Full of questions and answers. Full of sharing and learning.

Full of understanding.


Full of so much understanding, in fact, that when Jeff's body was overly tired from all the talking, our friends gladly moved the conversation into our bedroom after I got Jeff transferred back to bed. If there's any group of people who know that sometimes you just need to get out of your chair and into bed, it's certainly this group.



A little while later, we hugged and said our goodbyes to Claire and Kenny. Then Monica, Glen, Andrea, and Chad headed back to their hotel while the girls embarked on their long-awaited sleepover.

I went to bed that night with my head spinning (which may or may not have had something to do with red wine) wondering how in the world I was going to capture all of this in a blog post.

How do you write about an experience like this? A gathering of people who understand your life - not just people who sympathize with you, but people who truly get you. For the first time, we were able to sit down and see glimpses - sometimes whole reflections - of ourselves and our lives in our new friends. How do you summarize what that's like and what that means to your family?

***

The next morning, the girls were up early, eager to spend more time together. They were in the spa by 9:30, unfazed by the windy chill.


Afterward, they opened friendship necklaces and gathered close to see how the three pieces fit together.



Before we knew it, it was time to say goodbye. Parents arrived, bags were packed, and hugs were given all around. Sincere words of how we really want to get together again were spoken.

We said our farewells with sad smiles and happy hearts.

Later that afternoon, as Evie was nursing a slumber party hangover, she and I were resting on the bed.

"Did you have fun with your friends?" I asked.

"SO MUCH FUN."

"Did you guys talk about how all of your dads are paralyzed?"

"No."

That's when I realized my question was rather silly. Why would they talk about it? For the first time, they were in an environment where they didn't have to field questions like 'What's wrong with your dad?' and 'Why is he in a wheelchair?' They didn't have to explain what the word paralyzed means.

They could simply be themselves.

"Do you think you will be friends with them for a long time?"

"A looooong time. Longer than any of my other friends."

"Really? Why is that?"

"Because their dads are like Daddy. And they know what it's like."

And with those 5 words, I got my answer to how I was going to sum up this entire experience - my answer to why it's important for families like ours to meet and connect and forge bonds.

They know what it's like.

Yes, they sure do.

Tuesday, September 26, 2017

The Toll of Constant Caregiving: Sleep Deprivation

Today I'm writing about something that's hard for me to admit.

I'm overwhelmed.


I am the glue that holds my family together. I provide all the care for my paralyzed husband. I engage in all of the hands-on, physical aspects of parenting our daughter. I work part time. I maintain our home. I manage our finances and all of the administrative aspects of my husband's disability. And now and then I work in some time for myself so I don't lose myself in the acts of providing for everyone else.

And most of the time I do everything without batting an eye.

Most days I am a machine.

But lately my machine hasn't been performing optimally.

For the last 7 months, Jeff and I have not been sleeping through the night. Not one night in more than half a year have we gone to bed without waking up at least once to address his needs. Most of the time we're up two to three times. Sometimes it's just for 5 or 10 minutes. Other times it's for an hour or more.

And while I don't know precisely how much lost sleep time we've accumulated in the last 7 months, it's safe to say we aren't sleeping enough.

Getting adequate sleep is important for both of us. But Jeff and I agree that it's essential for me since I need both the physical and mental stamina to get us through each day.

Lately I've felt like I did way back when our daughter was born. I think any new parent will agree that the first couple months of parenting are utterly exhausting. And much of that deflated feeling is due to lack of adequate sleep. According to a study titled "Interrupted Sleep Can Be As Harmful As No Sleep," researchers found that interrupted sleep is the equivalent of no more than four consecutive hours of sleep. And that a lack of adequate sleep can result in, among other things, "compromised cognitive abilities."

And when your cognitive ability is compromised, mistakes can be made.


A few weeks ago, I almost made a serious mistake in Jeff's medication. And the only reason I avoided the mistake is because I got lucky.

Since we'd been waking up so often in the middle of the night, I decided to try to make our morning routine go a little quicker by pre-loading his morning medication in a small cup I kept on the bathroom counter. While I already have his daily medication sorted into a pill organizer, I always keep his pain medication separate. But I had been adding in the pain medication to the pre-loaded cup so I could dump everything in his mouth all at once.

Only I wasn't being consistent with adding the pain medication. Sometimes he'd need a pain pill in the middle of the night, which meant he wouldn't need it with his morning meds. So my system of adding the pain pill to the daily meds wasn't set in stone.

One morning, after a long sleepless night, I was on autopilot. I grabbed his pre-loaded cup of meds, added in a pain pill, and put them all in his mouth.

As soon as he swallowed them, my eyes flew open. I immediately felt sick, and I started trembling.

"Oh my god." My voice was raspy and shaking. "I might have just given you two pain pills at once."

I put my hands over my mouth and started crying. My head was spinning, trying desperately to recall if there was already a pain pill mixed in with his pre-loaded meds.

The pain medication Jeff takes is strong and potent. He typically takes two each day, about 8 hours apart.

And I may have just given him a double dose.

The next four hours of our life were filled with an incredible amount of anxiety. We researched information on overdoses. We thought about calling 911. I rocked back and forth on a stool next to Jeff's bed - the guilt eating away at me.

Finally after four hours passed, we determined that I hadn't in fact given him a double dose. He didn't feel any different than he did with just one pill.

Still, I know that we are extremely lucky this scenario ended the way it did. It so easily could have ended differently.

And if all this wasn't bad enough, a few days ago we had to cancel a morning appointment with a specialist that we'd been trying to secure for the last month for Jeff's stomach pain, because I once again hadn't gotten enough rest. And this time I had an anxiety attack on top of it, knowing that there was no way I could muster up the physical, mental, and emotional strength to get myself ready, our daughter off to school, and Jeff dressed, fed, transferred, in the van, and to the doctor all by 9 am.

It was all too much.

I had been continuing with the constant, demanding pace of this life, but I had been running on the fumes of my reserve tank.

Caregivers can't provide proper care on an empty tank.


So what do we do? Jeff and I have been talking about ways to get more sleep. For starters, we're getting to bed earlier. That means pushing pretty much everything we do after dinner up a half hour. But if that's what it takes, that's what we'll do.

And a dear friend of mine, who also happens to be my boss, recommended a few minutes of mindful meditation and reflection each day to help calm the constant buzz of my brain.

I've been overwhelmed before. And I always find a way to rebalance. But I've never had such a close call with a serious error, nor been the reason we couldn't make a medical appointment.

So I'm working on making changes.

I'm taking cues from recent events, and I'm in the midst of redistributing the weights right now.