Tuesday, November 29, 2016

The Broken Tree



Last week, we put up our brand new Christmas tree. Our old tree had a section of lights that pooped out last year, so instead of me trying to fix the lights on the old tree, Jeff and I decided buying a new, working tree was the way to go. As the solo caregiver to a husband who is paralyzed and the only able-bodied parent to our 7-year-old daughter, the luxury of time to do things like fix broken Christmas trees is most often not on my side.

But on this day, this tree trimming day, Evie and I set aside some time to unpack the new tree. I dragged it across the garage floor still in its box. I opened it up, and together we brought it inside the house, piece by piece. Evie held the stand steady while I inserted the bottom portion - then the middle - then the top. I connected all the plugs on the interior of the tree. We then spent a few seconds opening up the branches, but the excitement of seeing it all lit up was too much. I grabbed the plug and pushed it into the outlet.

The tree illuminated.

We ooohed and aaahed at all the lights.

My eyes poured over the branches.

Then right in the midst of my next oooh, my voice cut off abruptly. I stared in disbelief.

Right there in the middle on the left-hand side of the tree ...

there. was. nothing.

"Aaah!" I gasped. "Those lights aren't working!"

I immediately went into troubleshooting mode. I checked to make sure I hadn't missed a plug on the interior of the tree. I wiggled the plug, hoping that would magically make the lights flicker on. I noticed that there were two wires coming out of the plug in question. One side led to a string of lights that were working perfectly. The other led to the broken lights. So I isolated the malfunctioning strand and pushed in a few of the bulbs to make sure they were fully connected. I even replaced the fuses in the plug. Nothing worked.

Evie kept saying, "It's okay. I think it still looks fine," as she continued to fluff out the branches. I think she was just trying to calm me down because she could see the storm that was rising within me.

But I couldn't let it go. So I removed a bulb from one of the strings that was working, and immediately saw an entire section of lights go dark. I knew from that little test that I was facing the dreaded "one light goes out they all go out" scenario.

I marched back into the bedroom where Jeff was still in bed and spit out the words, "There's a section of the tree that isn't working." Okay, in all honesty, my words were a LOT nastier than that, but you get the idea.

Jeff closed his eyes for a minute. He knows how this kind of thing can set me off. He calmly offered me suggestions which I rudely shot down as having already tried. I stood in front of his bed in silence. My chest heaving.

I told him the next logical step was to contact the holiday light keepers: his parents.

"I'm texting your dad to see if he has one of those stupid tools that's supposed to fix these damn lights," I said with my phone in my hand. In 5 minutes, Jeff's dad was at our house with a cardboard box labeled "Extra Christmas Lights" which also contained the stupid tool - a little phaser-like red plastic thing that didn't look very promising.

After replacing the batteries in the stupid tool (which cost my father-in-law a trip to the store and me a good 15 frustrating minutes to properly insert), I poured over the instructions.

First I followed the "find which light is broken" step by passing the stupid tool along the wire while pushing the voltage checker button on the top. Now if the lights were laid out in a nice straight line, I think this method may have actually worked. But I was dealing with lights on a "pre-lit" tree where the wires are all snarled into the branches. I got about 5 lights into this tactic, the stupid tool kept beeping then not beeping then beeping again, so I aborted this method in frustration.

Then I tried the "plug the lights into the stupid tool and watch the magic happen" method. I plugged the string into the port on the phaser and commenced the step of "pull the trigger 30 times." 30 times! Really?!

We've all seen the commercial. By about the 3rd click all the lights are supposed to come on.

This is not what I experienced.

By around the 20th pull of the trigger, I looked ahead at the next step thinking it would be something like "now hop on one foot, spin around three times, close your eyes, and voila! your lights are on!" But after 30 pulls, the lights still weren't on. And there was no additional step.

I was on the verge of truly losing my mind.

By this time, I was 90 minutes into multiple failed attempts to get this damn tree working again. Luckily Evie's friends from up the street rang the doorbell, and they were happily playing in her room during my trials and errors. I forced myself to take a break at this point to feed Jeff lunch and get him out of bed. Another 90 minutes later, and I found myself back in the living room glaring at the devil tree.

My next option was to face the "one goes out they all go out" scenario head on. I had to test each light on the string to find and replace the "one." After an hour, I'd made it through 3 branches with no luck. My fingers were shaking and pretty close to bleeding.

I had to stop.

I felt entirely defeated.

My in-laws came back in the door and asked somberly how it was going.

Not well.

This scenario is exactly the one I had hoped to avoid by purchasing a new tree this year. And I think that's why I was so infuriated. Because a broken tree isn't a big deal in the grand scheme of things (especially when compared to a broken neck).  But today, this broken tree had just about broken me.

I sighed and turned to my in-laws who were planning on taking Evie shopping the next day.

"When you guys are out tomorrow, will you pick up a strand of clear lights with a green wire for me? I think that's my last option at this point. I just have to hope they match."

My mother-in-law sat up, stared at me, and announced, "I think I have a set at home. I'm going to go find it." And with that she walked out the front door. Three minutes later she was back with a tiny box in her hand which she presented to me.

It was a box of 50 clear lights on a green wire. As I opened the box, I felt very much like Charlie Buckett as he unwrapped that chocolate bar that held his last hope of finding a Golden Ticket. I took the bundle of neatly packed lights and plugged them into an outlet in the kitchen to test them.

They worked.

I took them over to the tree to compare them to the pre-strung lights.

They matched.

I plugged them into the interior outlet of the tree and snaked them around the six dead branches.

They instantly came to life.

It looks like I'd found my Golden Ticket.

I hugged my mother-in-law and thanked her for saving my sanity. Later, when Evie saw the fully illuminated tree for the first time, she gasped. And together we fluffed out the branches.

I got the ornaments down from the rafters in the garage, and Jeff sat in his wheelchair watching me and Evie as we began to trim the tree. We found ornaments that we'd had for many years - ones Evie had made when she was little, ones my mom had made from my childhood, and ones that Jeff and I had gotten from his old work's holiday party. It turns out that we didn't have enough ornaments to properly cover the tree, as this new one was bigger than the old one. So at the end of the evening, we had a half-decorated but fully lit tree. I was still muttering curses at it during the tree trimming, but was decidedly much happier with the positive turn of events.


The next evening, after Evie went shopping with nana and papa to get more ornaments, we finished the trimming. We added gold, silver, and blue bulbs, and a few sparkly snowflakes. And we topped it off with a red poinsettia. I stood back and took it all in.

"It really is a nice tree," I said. "I really do like it."

"Finally," came Evie's sarcastic voice accompanied by a dramatic eye roll.

* * * * * *

That night, after everyone was asleep and I was alone in the living room with the tree, I stared at it intently. Could I tell where the broken lights were? Absolutely, I could point out each branch if necessary. Would I always look at this tree and see it as broken? Probably. We certainly did a great job of covering it up, but underneath it all, I knew the truth.

And that's when I realized that this tree - this broken tree - is actually the perfect tree for us.

Because there will always be a part of our life that is broken.

Interrupted.

Fragmented.

Yet strangely not incomplete.

My broken family - like the broken tree in front of me - is made complete not because we put on a good show and cover up the imperfections, But because of the way we've come through the hardest years of our life. The way we've come back from the depths of despair. The way we've tried, failed, but kept on trying again and eventually learned to live a full existence within our broken life. It's not always graceful. But that's how we've managed to stay complete this whole time.

A few days later, we got out more holiday decorations including a smaller tree that we use to decorate the front porch. We've had the tree for years. Jeff and I used it when we had a tiny one-bedroom apartment when we were first married. It was Evie's first Christmas tree. It has a gold base that has scratches and a few chunks missing here and there, but overall, it's been a great tree. And it makes a great light-up decoration on our front porch.

I got it out of the box, put it together, plugged it in, and this is what I saw.



I won't even type the words that came out of my mouth.

I'm sure you have a pretty good idea of what they were.

Happy Holidays everyone!



Tuesday, October 18, 2016

I'm Not in a Bad Mood - I Just Have My Game Face On

"I want you to be happier, Mama."

The soft voice of my seven-year-old daughter snapped me out of my thoughts and brought me back to the present.

"Oh, I'm not unhappy, Sweetie," I told her reassuringly. I smiled at her to make sure she knew I was telling her the truth.

"I thought you were upset," she continued. "You had your mad face on just now."

Moments before, I was in the bathroom getting ready to head out of the house with my family. We were planning to visit my dad's new place about 7 miles from our home, and it was about 30 minutes before our departure time.

I was standing in front of the bathroom mirror when Evie came in. I was in a deep state of concentration. In my mind, I was going over the checklist of supplies I'd packed for our outing:

Suction machine is charged and packed. Check.

External power supply is packed under the back seat in case Jeff's vent battery fails. Check.

"Go Bag" full of one of each supply we'd need in case of emergency is in the back of the van. Check.

Did I pack the nitro paste in case of AD? Yes, front pocket of Go Bag. Check.

Don't forget the portable ramp. It'll be the last thing you put in the van - just behind Jeff's chair.

I was visualizing all of the supplies on my checklist, so when Evie came in, I didn't even know she was there at first. And so it turns out that what she thought was my mad face was actually my game face.



Because so much of this life is about preparing. Any time we leave the house, no matter how long we plan to be gone, we are consumed with preparations. Long gone are the days of grabbing keys and wallet and hopping in the car. Now it's about creating a What If list then making sure we're covered should that What If come to pass. I'm fully aware that living life constantly worrying about unlikely or unfortunate scenarios manifesting themselves is rather unhealthy, but when you live with a spinal cord injury, facing life unprepared is both irresponsible and dangerous.

Evie's misinterpretation of my mood based on my facial expressions got me thinking about how others may perceive me. While I try to strike a balance in being appropriately lighthearted or serious given the situation, the truth is that the seriousness more often wins out.

I often feel that others might perceive me as anti-social because I can never truly offer them my full and extended attention. As a caregiver to a husband who is paralyzed from the neck down and on a ventilator, I always have one ear open to listen out for him. Throw in being a mom to a seven year old, and I am perpetually distracted. My attention is constantly ping-ponging between them.

For example, on early evenings when the weather is beautiful, Evie likes to spend time out front scootering up and down our street - seeing if there are other kids on the street who are doing the same thing. There usually are on these nights. And their parents are out too.

Most evenings like this, Jeff typically stays inside the house because what feels like a light breeze to us feels like a frigid wind tunnel to him. So he stays warm and cozy in the house while Evie plays away in the front yard or in the street. And I position myself in the middle. Right where I can hear Jeff and see Evie. Some evenings I see parents of the kids along the street hanging out and having conversations. I wave to them, smile, and sip my wine. But rarely do I break that invisible barrier at the end of our driveway. I have, on occasion, had more than just a "Hi, how are you"conversation with some of the neighbors, but that's only when someone is inside the house with Jeff. If he's alone, I keep the conversations brief, oftentimes politely cutting the chat short and excusing myself to check on my husband.

And most of the time, he doesn't even need me. He's fine.

But it only takes one time of him not being fine and me not being there to make this already difficult life unbearable.

I remember the weeks following Jeff's injury - those awful days where everything was so scary and uncertain. Jeff was so weak. His body couldn't tolerate being off the vent for even a few seconds. His anxiety level was at an all time high.

The only source of comfort for him was me.

One night a new nurse was doing Jeff's trach care which involved taking the air off, removing, cleaning, and replacing his inner cannula, then reattaching the air. I told the nurse that she had to be quick because Jeff couldn't be off of the air for more than a few seconds.

Perhaps she didn't hear me.

When she took the air off and began to clean the inner cannula, I could tell she was working too slowly.

My face was right next to Jeff's. I tried coaching him through this in a calm voice. "You're okay," I said, trying not to let him know my heart was beating frantically as he struggled to fill his lungs with air while the ventilator blew on his chest instead of into his airway. "The air is coming right back on in a second," I continued hoping my words would make the nurse work faster.

But she wasn't fast enough. And Jeff couldn't hold on. I watched helplessly as his world started to fade away. The blood drained out of his face, his eyes rolled backward, and his head slouched to one side.

The alarms began to sound. The nurse jumped. She clearly hadn't expected him to pass out. She clicked his cannula back in place, and I jammed the air back onto his trach. I held Jeff's face in my hands and patted his cheeks. This had happened once before, so at least I was prepared even if the nurse wasn't. "Come on back, Jeff." I told him. "Come on sweetie." His body was breathing again, but his brain hadn't caught up yet.  I patted the area where his neck meets his shoulders, knowing he could still feel there too. "Jeff. Jeff. Come on Jeff. Come back." My voice was shaking, but I kept steadily demanding him to come back to me.

Finally his eyes fluttered open and his head shook. He was confused and frightened. It took him a second to remember where he was.

"Hi sweetie," I said as relief washed over me. "You're okay. You're okay." I was telling myself this as much as I was telling him.

After he processed what had just happened, his face contorted into sadness, anger, and fear all at once, and he whispered, "I thought I died just now." I hugged him and put my forehead to his. All we could do was look at one another and cry. How could this possibly be our world now?

I'll never forget this incident. He had a few others like this in the hospital, but this one stands out to me the most. It's the reason I never stray too far from his side. It's the reason I stay in the driveway instead of mingling with the neighbors. It's the reason that when I do have to leave him in the care of others to run an errand, I am filled with anxiety until I am back by his side again.

It's the reason that I'm so serious.

It's the reason I oftentimes struggle with carrying on meaningful conversations about everyday things with other people. Not because their everyday issues are inferior to mine, but because my everyday is so different from theirs.

Because every day is game day in our world. Every day requires a level of seriousness and attention and preparation that most people can't truly comprehend, my old self from my old life included.

Because I need to be there for him - and I need to bring my A game when I do.

And because he needs me there. He needs to trust that I will be there to get him through the day.

To laugh with him,

To cry with him,

To live this life with him,

To put his air back on.


Alright, this time out has been long enough. Time to get back to the game.


Thursday, September 22, 2016

An Unexpected Birthday Gift

Jeff was injured two months before his 40th birthday. He had planned to spend that birthday with his brother Gary and some friends watching the San Diego Chargers play the Tennessee Titans in Nashville. The plane tickets were purchased, and Jeff was so excited about his upcoming trip, which had become a tradition for the past few years.

A couple days after Jeff's accident, as he lay on a bed in an ICU room, half awake/half groggy from all of the sedation, he mouthed the words, "No more Nashville" to me. I shook my head slowly, tears in my eyes, and whispered back to him, "Nope." I knew how much he wanted to go on that trip. And I knew this would be just the first of many realizations of the things he would no longer be able to do because of the sudden turn our lives had taken.

For the first two months following his injury, we spent the first month in the trauma hospital he was transported to right after the accident. Then he was moved to a sub-acute facility where he spent 6 days before contracting pneumonia. He was immediately taken back to the trauma hospital where we stayed for several more weeks.

I didn't fully comprehend why at the time, but I felt in my gut that we weren't at the right hospital. The two facilities we had been in just didn't feel right. I felt like what they were doing was just keeping Jeff alive, though just barely at times. We were at the point in our journey where we needed to be in a place where we could thrive, not just survive.

I remember hearing about a rehab hospital for people who had spinal cord injuries that was about 25 miles from our home. But after applying to it, our insurance rejected Jeff's admittance. Instinctively, I pushed back. This was my first true experience in advocating for Jeff - for us. Because although I wasn't quite sure what this rehab hospital was going to do for Jeff, I knew he had to be there. I also had to convince Jeff that it was the right move. He initially didn't want to be moved to a facility further from home. But eventually both Jeff and the insurance came around. And so on Jeff's 40th birthday, we took an ambulance ride to Rancho Los Amigos where Jeff would begin his spinal cord injury rehab.

We spent the first three weeks at Rancho in the ICU, and honestly, that time didn't feel much different than our time at the other facilities. Much of the time in ICU, respiratory therapists were trying to wean Jeff off the vent. Because his injury is at the C4 level where the nerves that control the diaphragm are, we were told that weaning might not be possible. But they had to try.

It didn't work.

In addition to the unsuccessful weaning, Jeff was now dealing with a pressure sore that had developed on his tailbone at the prior facility. And it was getting progressively worse. Jeff was losing weight fast. I felt like I could see him wasting away.

Those first three weeks at Rancho were pretty much a nightmare. I remember driving to the hospital at night and walking alone in the dark to the ICU. Nicely put, the facility was not a modern gem. Its structures were worn, and a few of the buildings looked like they'd been abandoned. Frankly, it was a bit unnerving. I remember thinking, What have I gotten us into?

But then Jeff was moved out of ICU and into a whole new world at Rancho. And we began to see just how different this facility was from the others we'd been in. We were finally entering the actual rehab stage, and Jeff was put into a room on the fourth floor of the Jacqueline Perry Institute (JPI) building where other inpatients were also rehabbing after their spinal cord injuries. A team of several individuals made up of therapists, case workers, social workers, and specialists met with us and told us Jeff had been approved for 5 weeks of rehab. We would be starting right away.

After doing nothing but focusing on surviving each day for the last two months, this was a different routine for us.

For the first time, Jeff was taken out of his bed and put into a wheelchair. A team of nurses would put a sling underneath Jeff by rolling him from side to side. There was a track installed on the ceiling over the bed that a lift would slide on, and the loops on the sling would attach to the lift. The nurses would work together and maneuver Jeff into the wheelchair parked at the side of the bed. It was tricky because they had to work around the vent. Also, Jeff's neck was still so weak, it was like a newborn's, and would flop if someone wasn't holding it. And once he was in the chair, his blood pressure would tank and he would come very close to blacking out. Some days when he would transfer into the chair, he spent the whole time leaned back to the point that he was just staring at the ceiling. Very slowly, his body began to acclimate, and he could begin to sit more upright.

He got in the chair 6 days a week. He pretty much hated it. But he had to do it.

It was one of the reasons why we were there.

Then there were classes all the patients had to attend. If they didn't feel well enough to get out of bed for class, nurses would wheel them into the room in their beds. These classes weren't optional. Family members were encouraged to attend as well, and I went to every single one of them with my notebook. We learned about so many topics:

- dealing with and preventing pressure sores

- understanding the symptoms of autonomic dysreflexia and how to alleviate this extremely serious condition for people with spinal cord injuries

- transportation options for wheelchair users

- bathing options

- discussions on pain and knowing the difference between physical and nerve pain

- sexuality after a spinal cord injury

- recreational and social activities

- financial aid options

The list goes on.

These classes weren't just a way for us to pass the time. They were filled with information we would need for the next ... well, rest of our life.

They were another reason why we were there.

Oh, and then there was the hands-on training that I began almost immediately once Jeff began his rehab. To be honest, up to this point, I hadn't given much in-depth thought as to how I was going to learn to take care of Jeff. My mind had been so focused on things like helping get Jeff through each day, making him as comfortable as I could, and handling every single jumbled up life detail that came in the wake of Jeff's injury. I had pretty much let the nursing staff handle all the hands-on stuff till now.

But that all changed at Rancho. At Rancho, I was transformed.

Respiratory therapists taught me how to suction Jeff through his trach. They taught me what the alarms on the ventilator meant and how to respond to them. They taught me how to push life-saving air into my husband's trach using an Ambu bag should the ventilator ever malfunction. They taught me that the ventilator wasn't as scary as I may have initially thought.

Nurses taught me how to flush Jeff's catheter to keep it clear of sediment. They taught me how to clean Jeff's trach using hydrogen peroxide and saline. They taught us about a bowel program and taught me how to do it so that my husband could poop on a schedule - something we hadn't even heard of before we got to Rancho. Something, as it turns out, that was a really essential piece of knowledge in moving forward in living with a spinal cord injury.

Therapists taught me how to stretch Jeff's arms and legs. They taught me how to transfer him from the bed into a wheelchair using a manual lift. They took me into the therapy gym and first transferred me from a mat into a chair so that I could get an idea what it was like from the patient's point of view. Then the therapists took turns being the patient while I did the transfers. Then I began assisting in Jeff's actual transfers, until I knew and could perform each step like clockwork.

A quirky ENT doctor taught me how to change Jeff's trach - the actual plastic piece that goes into the hole in Jeff's throat that the ventilator attaches to. He made this task, which seemed so scary to both me and Jeff, seem like a piece of cake. He didn't just teach me how to do it, he made me do it myself. It didn't matter that I had trembling hands and a pounding heart. Because he wasn't just teaching me a task. He was giving me a vital skill in keeping my husband alive. It was one of the most frightening things I did at Rancho.

None of this was easy. It was all overwhelming, exhausting, and sometimes downright terrifying.

But it was all more reasons why we were there.

As Jeff's official rehab allowance by our insurance was about to end, the wound care team at Rancho decided Jeff's pressure sore was too deep to heal on its own. He needed surgery to repair it. And so we found ourselves facing at least six more weeks at Rancho while Jeff healed. Jeff spent those six weeks flat on his back in a sand bed. No therapy, no getting up in the chair, no classes. Just healing.

While Jeff healed, he had a roommate, Jose, who was also dealing with a pressure sore. We naively figured Jose had been newly injured like Jeff, so we were surprised when Jose's wife Rosa told us that Jose had been injured for 40 years. Jose had initially been a patient at Rancho after his diving accident, and they had experienced much of what we had. Rosa told us pieces of their story. How they had four children at the time of Jose's injury. How Rosa didn't even know how to drive when her husband was injured - but had to learn quickly. How they made friends at Rancho during their initial stay, and how Rosa would drive them to their nearby house for weekend getaways. How both she and Jose acquired educations after his injury. And how Jose eventually participated in the weddings of all his children, even wheeling his daughters down the aisle and dancing with them.

Jeff and I cried when she told us this. Because finally being able to connect with people whose lives had changed so drastically like ours, and hearing how they have since thrived, is one of the biggest reasons why we were there.

Once the six weeks in bed passed and Jeff's incision started to heal, he began gaining some weight back, and was able to spend more time out of the bed and in the chair. While we waited for insurance to get all the details of discharge sorted out (which took an extra month - evidently discharging a patient on a vent is a long process), we continued to practice our newly acquired skills and work on details for moving forward in our new life. Therapists worked with Jeff on things like driving his wheelchair through an obstacle course of cones in the therapy room. He learned how to turn around in tight spaces, like an elevator. And he was measured for a custom power chair that would be delivered to our home after discharge. I continued the hands-on care, and got to the point where respiratory therapists would come in the room, hand me the breathing treatment, and let me administer the whole thing. When Jeff needed suctioning, we wouldn't even call for anyone. I just handled it.

One of the last tasks we had to complete at Rancho was spending the night in the "mock apartment" located on the second floor of the JPI. This was where, after all the skills had been both taught and demonstrated, the patient and his caregiver and family members would spend an evening alone. No nurses, no therapists, no doctors. They would be available for anything urgent, of course, but the point of the exercise was to be able to handle everything on our own as a test before we were cut loose and thrust back into "real life."

And we did it. It was like passing the final exam with an A.

So when the day came for Jeff to head home - 5 months after he was admitted - we met that day with a confidence that only a rehab facility like Rancho can provide.

And we even took a few pictures along the way:


In ICU at Rancho. This was the first time he could have something besides water to drink. :)



The first time Evie got up the courage to give Daddy a kiss after his injury.
I think the beard may have been a bit much for her. :)



Thanksgiving 2013. Healing after pressure sore surgery.



These photos were taken 3 months apart. In the one on the left, Jeff was so thin and weak. It was one of the first times he sat up in a chair. In the photo on the right, he is showing signs of getting stronger and healthier.



Practicing his driving skills in the gym at Rancho.




With the beard gone, his sense of humor is returning. :)




Evie came to visit Daddy often. Of course everyone loved her.
Being away from Evie for nearly 7 months was very difficult for Jeff.



In the days leading up to Jeff's discharge, I took a bunch of photos with the fantastic staff members at Rancho who played such big roles in helping us learn to live this new life:




 

 


Here's the quirky ENT doctor. He was a crack up.


Jeff and I still talk about how Rancho saved our life. Because it was there that we obtained both the skills and knowledge that we apply to our life every single day.

Still, every. single. day.

So as much as I would have liked for Jeff to have gone on his trip to Nashville for his 40th birthday - something he wanted so badly - what we got instead turned out to be something we desperately needed: the foundation for learning to live again.

It's something we will always, always be thankful for.

---

I encourage anyone who is facing a life-changing injury, illness, or diagnosis to seek out a rehab hospital specializing in your condition. It will truly make all the difference.

Monday, August 29, 2016

Understanding the Fear and Growing Through It

Our girl started second grade today. She told me last night as I was putting her to bed that she was excited and a little scared ... but mostly excited.



She was up at 6:45 this morning with wide eyes and a smile, ready to take on the world. In the last few days I swear she's grown a couple inches.

Sometimes the growth and change in our children seems to happen so suddenly. One day they are playing dressup, and the next day they're asking questions parents aren't yet ready to answer.

I recently got to witness one of these developmental leaps in Evie.

It centered around the events of Jeff's injury.

She and I were in her room talking about fear. The subject came up because she had been playing out front earlier that day, and I'd been watching her like a hawk. I tried to explain why I keep such a close eye on her - that I'm not necessarily watching her. But rather, I'm watching out for her.

I fully believe that because of Jeff's injury, I now have a deep-seeded, almost constant fear that something else bad will happen. My fear then manifests itself into the completely irrational thinking that if I keep my eye on Evie, nothing bad will happen to her. If I can see her, she'll be fine. And I think my mind follows this completely irrational path because I didn't actually see Jeff's accident happen. It's one of those, "Maybe if I'd been watching him he wouldn't have been hurt" nonesense things my brain sometimes does.

And so the conversation I was having with Evie turned to the day of Jeff's injury.

Evie was at the beach when Jeff was hurt. She had turned four just a couple months before, and as she stood in the sand that day, she couldn't possibly understand that she was witnessing an abrupt change in the course of her family's life.

She's asked me so many questions about that day. Things her four-year-old-mind doesn't remember: "What bathing suit was I wearing the day Daddy got hurt?" "What was I doing right when Daddy hit his head?" "How did I get home from the hospital that day?"

But the questions she asked me now were different. They were deeper and showed a surprising level of empathy that, frankly, I didn't expect yet.

"Did you cry when you first ran up to Daddy when he was laying in the sand?" I didn't cry right away, I told her. I was really scared and was trying to figure out what had happened to Daddy. And sometimes when you're scared and confused, you don't cry right away.

"What was Daddy feeling when he was laying there?" Then she clarified - showing that she was talking about his emotional state rather than physical sensation because she knows that was something that was already gone for him. "I think he was probably really freaked out!" she continued. And on the words "freaked out" she opened her hands and thrust them downward with each syllable to emphasize the emotion. Yes, Daddy was really freaked out. He was very, very scared.

"When they took Daddy in the ambulance, did you ride next to him?" No, I wasn't allowed to ride next to him because the paramedics had to work on him during the ambulance ride. I rode up front with the driver."

"When you got to the hospital, did you stay with Daddy?" The nurses and doctors took Daddy into the hospital to do X-rays on him to find out what happened to his neck. I had to go with a woman to the waiting room and give her all of Daddy's information. After that, I got to go back into the room with Daddy.

"Was he sleeping when you got there?" No, the doctors and nurses were just getting ready to sedate him.

"Was he still really freaked out?"

With that one question, the images of being in that room with Jeff came flooding back to me. It was a tiny room. Hospital staff whizzed around Jeff hooking him up to every machine they could cram into that tiny space. I floated in a trance to Jeff's side. His brown eyes wide with sheer panic met mine, but I could tell that he couldn't really see me. His voice was weak and hoarse, and his shouted words came out as a whisper - "I can't breathe!" - and they left a breath mark on the oxygen mask over his mouth.

The doctors made me leave Jeff's side, but they didn't make me leave the room. I stood down by Jeff's motionless feet as they prepared to intubate him. I looked away as they put the breathing tube in his mouth and down into his lungs. I could see numbers and flashing lights on all of the monitors, but I didn't know what any of them meant. Then slowly, as each staff member finished their job, they ensured their patient was stable, and they began leaving the room, one by one. Until it was just me and Jeff, and the beep, beep, beeping of the monitors.

I was numb and gripped with fear.

I shook the memory away and came back to the present. I quickly decided all those details were probably a little too much for this particular conversation, so I simply answered, Yes sweetie, he was still really freaked out.

She nodded, satisfied with what she'd learned from our conversation.

And I realized that I was witnessing a growing moment. Her questions about that day were no longer centered around her. Today she was interested in learning about the experiences of others. She showed me that she understands that it was a really scary day for all of us - for her, for me, especially for Jeff. And she showed me that she isn't afraid to talk about it.

This morning, the first day of second grade, just before Evie and I headed out the door to walk to the bus stop, Jeff needed suctioning. We always need to make sure there's no obstructions in his lungs before I leave the house, even for just a few minutes. Jeff not being able to breathe is one of our biggest fears. I stood to the left of his bed and made quick work of clearing his lungs. Evie stood to the right of his bed, and as I finished up the suction work, she expertly grabbed the vent tubing, attached it back to his trach, and secured it on both sides with rubber bands, her fingers moving deftly and confidently.

She looked at us and smiled her yeah, I just did that smile. This is one fear she's definitely conquered.

Still, this life is filled with all kinds of fear. And everyday we interact with it.

We face it.
We re-experience it.
We overcome it.
We learn to live with it.

But mostly, we grow through it.

2013

2016 

 Look how far we've come.

Tuesday, August 9, 2016

Quad Cuisine - Fajitas!

Since Jeff and I have recently begun cooking together (you can read the back story on that, here), today's post is the first official segment of ...

... where my quadriplegic husband instructs me on how to make a meal.

A couple weeks ago, Jeff says to me, "I want to make fajitas for dinner this week."

I'd never made fajitas before. (No surprise there.) Neither had Jeff. So it seemed like the perfect meal to tackle together.

The night before the meal, we opened up the skirt steak we had in the fridge, and I cut it into strips. We realized there wouldn't be enough meat to feed everyone (we had Jeff's parents and my dad on the guest list), so we added a couple chicken breasts.

Evie had the job of pounding them with Jeff coaching her in the background.



She's really putting some muscle behind this whack.

Then it was time for me to cut up the fruit and veggies: red and green peppers, onions, and mushrooms. Jeff instructs me to cut the peppers into strips "pencil thin." After what seemed like two hours of cutting vegetables, my work clearly shows that the pencils I've been using are thicker than most. Haha.

Here are the veggies and meat as they prepare for a night of marinating in the refrigerator.



I didn't take any photos or videos of myself and my still-in-development knife skills, though I did snag this quick video from my computer while Evie and I were watching The Adventures of Puss in Boots on Netflix. Perhaps in time I can be this good.


video


So the next day was fajita day!

Jeff does a great job of giving me instructions when I cook. He knows I need both an overview of where this meal is going then a breakdown of each step (I used to be a procedure writer, so the more specific, the better).

First he tells me to get out the "limp wrist pan." This is what we'll be cooking the meat and veggies in. It's a goliath pan than weighs about a hundred pounds, and every time I lift it, my wrist goes all limp, hence the nickname.

I made Jeff take a picture of me holding it:


Now it was time to begin. Jeff informs me that we need to cook the meat first, then take it out while the veggies cook, then put the meat back in and stir the whole thing together. Why we're doing it this way is beyond me. I'm just following instructions.

So I heat up the limp wrist pan and in goes the meat.

By this time my in-laws have arrived - from three houses up the street - and we immediately put them to work (afterall, they're part of Team Quad Cuisine too!) My mother-in-law starts the rice, and I hand my father-in-law my phone and ask him to take photos.

Here we are as things begin to come together.




At this point Jeff asks me, "How's the meat looking?" His chair doesn't sit high enough for him to see into the pans, so he has to rely on my description.

I shrug and say, "It looks like it's sizzling."

He rolls his eyes and tells me to hold up a piece for him to see. He inspects and says it's time to take the meat out and put in the veggies.

I've failed to prepare a plate for the meat to hang out on while the veggies take a turn in the limp wrist pan, so I fumble around a bit until Jeff finally says, "Just grab any plate. A paper plate is fine."

So I get a paper plate and set it on the counter next to the pan.

That's on the stove.

Over an open flame.

(If you can see where this is going, you have more foresight that I did).

After a couple scoops of meat have been safely transferred from the pan to the paper plate, I begin to smell a hint of smoke.

Then I see orange flame.

"Ohmygod! The plate is on fire!" I scream. Thankfully I was able to big-bad-wolf it out before things really went south. Whew. Never a dull moment in this life.

Here's the evidence:


After all the excitement, a much needed wine break was in order.


So now we're in a bit of a holding pattern while everything cooks. I have a tendency to want to constantly stir, poke at, or otherwise prod the food while it's on the stove. I kept asking Jeff, "Should I stir it now?" And he would close his eyes and shake his head. 

After a few more times of asking the same question, he simply looked at me and said,  "Just. Let. It. Cook."

After some impatient toe tapping, I was finally given the go ahead on the stirring. I open the lid to the veggies (which the meat had rejoined by this point), and Jeff patiently and calmly tells me that my de-lidding technique could use some improvement. You see, whenever I take the lid off of a pan, I unceremoniously lift it and pull it away from the pan. Then depending which side of the stove the pan is on, I drip the condensation either all over the stove and countertop or all over the floor. Today it was the latter.




Jeff then explains to me that if I simply lift the lid straight up, then tilt the lid vertically over the pan, the liquid will magically fall back into the pan, and thus save some cleanup time later in the evening.

Gah ... all these little details! I'm realizing this cooking business takes practice and patience.

And that I've got a lot to learn.

But that's okay.

Because what I'm also realizing about cooking is that it can be fun, even exciting. (Did I really just write that? Anyone who knows me from our old life is likely gasping in shock at that statement.)

But it's true.

For me, learning something new and acquiring new skills is both fulfilling and rewarding.

For Jeff, finding a new way to do something - to be a part of something he loved doing in an old life - is restorative. It's a way for him to feel useful again.

And being able to make all this happen together, even if it isn't perfect, is a recipe for happiness.

......

So with the table set and the food hot and ready, we sat down (or as Evie points out, "Well, Daddy was already sitting down") and devoured our fajitas, rice, and beans.



Yum!

Even Evie with her picky, seven-year-old palate gave the meal two thumbs up!

And do you know what one of the best parts about this meal was? ...

Leftovers the next day!

Here's a pic of my and Jeff's plates:



And in case you're wondering, Evie ate corndogs.

Just keepin it real.

Happy cooking everyone! Thanks for following along.



Team Quad Cuisine



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.


-xoxoxo-


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.