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.



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.