Author: <span class="vcard">Audra Koklys Plummer</span>

The usually crowded theater was eerily empty on a Monday night with only one other family seated a few rows behind us. As we settled in and the lights dimmed, I found my mind wandering. Instead of enjoying the film and this solo time with my three kids, I was distracted by where we were seated. The prime seats we scored in the very center of the theater suddenly felt like the worst possible place to be sitting. Anyone entering the theater would see my family first. It was the first place bullets would fly. I can’t tell you much about the movie we watched that night.

The next day the shootings in San Bernardino County were all over the news and social media. By the time I left the house that evening my brain was completely saturated with tragic headlines and violent images. Rushing out the door, I heard the sounds of a helicopter flying overhead. As I pulled away from the curb, I saw the police logo on the side of the chopper and drove with a pit in my stomach to pick up the kids from school.

After completing my first pick up from the twins’ pre-school, I noticed the helicopter flying directly over my eldest daughter’s elementary school. I forced the panic down deep and drove just a bit faster, rolling through every stop sign along the way. With each passing block, the anxiety grew and the irrational thoughts started creeping in. What would I do if I approached her school and there was a lockdown in place? Would I leave the twins with a stranger or in the car? My mind began formulating all types of rescue scenarios that didn’t make the least bit of logical sense.

When we arrived, the school was quiet and nearly empty.  I rushed the kids into the car and headed home. By then, the helicopter was flying near our house. I didn’t know it at the time, but the police were using a loudspeaker to tell everyone to get inside. I didn’t have to hear the message to know something serious was going down.

The streets were empty; my adrenaline was flowing and my fight-or-flight response kicked in. On the outside I did my best to remain calm for the kids, but inside I was beginning to panic. The next few minutes while they grabbed their backpacks, their lunch boxes, their water bottles, their jackets, their shoes, and their 187 art projects off the floor, dragged on for an eternity. By the time all three were outside standing on the driveway I was practically yelling at them to get in the house. By then, the helicopter was directly over our home. “I’m the ultimate hostage – a frazzled mom with three young kids, arms overloaded, making the long trek from the street up the never ending flight of stairs into our home. We’ll never make it!”

With the last child inside, I bolted the doors, shut the curtains, set the alarm, and waited by the windows until the helicopter flew away. Why didn’t I watch that damn video on how to barricade a door during a shooting? And why does this always happen when my husband is out of town? I searched for information on the helicopter online, but couldn’t find anything that seemed relevant. It wasn’t until the kids were in bed and sound asleep that the fear began to subside.

Sadly, over the course of the past year, there are more stories like this than I care to admit. One of the most frightening happened over the summer when I unknowingly walked into a real lockdown situation on my twins’ campus. I didn’t realize what was happening until I tried to open a classroom door and found it locked. Then I stood dumbfounded by the deafening silence. The entire campus of rambunctious pre-schoolers was completely quiet. Not a single sound. The police contained the incident off campus; it was over almost before it started. But those few minutes of recognition, standing in total silence, left an imprint on my soul that will be hard to erase.

As more and more of these occurrences stack up on a weekly basis, I realize the fear never really goes away. Not anymore. While I can still say it doesn’t rule our lives, I’m beginning to wonder how long that will last. For now, we don’t hesitate to do the things we love; we travel; we go to theaters and restaurants; we enter crowded public places and ride on public transportation. The difference is that the fear, once absent, comes with us, too. This is now the new normal.

This morning, as the kids piled into the car, their boundless energy took the form of pure joy.  They sang about Santa, and dreidels, and a little light that shines.  Every few feet of our drive were met with an enthusiastic shout, “A wreath!”  “Christmas tree in the window!”  “Lights!”  They asked what I thought about the world being filled with sparkles and glitter from the ground to the sky.  For a few minutes, on that short drive, the fear in my heart was replaced by overwhelming love and the world was filled with goodness and light once again.

Reflecting on the world as a dark and dangerous place seems like a somber way to ring in the New Year. I am also filled with hope. I can’t help but think 2016 will bring more opportunities to connect us as human beings — to simply demonstrate how similar we all are. Each and every one of us.  

 A stranger inspired me to start this blog. She reminded me how incredibly powerful the human connection is, and in an instance, her small act of kindness changed my perspective of the world around me. I hope as I meet more beautiful strangers and fill these pages with their photos and stories, it will inspire me to face my challenges with courage and confidence and to think more deeply about the way I respond to the people around me.  

 I hope the connections we all make in 2016 make the world a little less dark and a little less scary because really, we’re all in this together.

It was my fourth trip to Arizona in recent months. Each morning I got up before the sun and headed to the rehab facility so that we could attend physical therapy together. I believed that if dad showed up each morning, tried to stand, and accomplished everything the therapist scheduled for him, it meant he was getting better. I was desperate for reassurance.

My dad had stage four prostate cancer that had aggressively metastasized into his bones and lymph nodes. He had been in and out of hospitals over the last few months battling the side effects of an aggressive chemotherapy regimen. Every doctor I spoke with said the disease was incredibly painful, yet my father never complained. Not once. But despite his strength, the toxins were too powerful for his body and caused more harm than good. It became clear in this final visit that the cancer was winning.

I had a hard time accepting the inevitable and needed to hear it directly from his oncologist. I pushed to get dad in for an appointment before his doctor left on vacation. Then at the appointment, I pushed his doctor to be brutally honest with us. And when my dad said he didn’t know what hospice was, I urged the doctor to explain. His words, “My friend, this is the end,” seemed surreal at the time.

When we walked out of the doctor’s office, we had to wait for special transportation. My father was wheelchair bound from a hematoma and for the first time in his life he was dependent on us rather than the other way around. As my mom and dad waited for the van, I went back to the doctor’s office to use the restroom. I was too busy processing the doctor’s words and my own feelings to pay attention to what was going on with dad.  It wasn’t until I exited the doctor’s office and headed back to my parents that I saw it; the heartbreaking expression that covered my dad’s face.

That night I had a very vivid dream. In the dream, my dad was seated in his wheelchair looking at me with the same expression I witnessed outside the doctor’s office. He didn’t say a word. He just sat looking right through me.  His wheelchair, a new appendage, was parked at the entrance of a dark tunnel. It was my own voice and the words, “Are you afraid?” that abruptly woke me. Hours later he was dead.

That morning was the first time I chose not to go to the rehab facility to see him. That morning was supposed to be about my grandmother who was celebrating her 100th birthday. I told myself I would have many more days to focus my attention on dad. He was getting better, he stood for the first time in weeks, and his physical therapist said that on Monday he would take his first steps. More importantly, he was talking and communicating. I had flown out to Arizona on short notice because my family claimed he was no longer lucid. Yet the day I arrived, from the first moment I saw him, he smiled and told the physical therapist with pride, “That’s my daughter.”

We spent the next two days engrossed in our simple routine: morning physical therapy, sitting quietly together in his room, chatting briefly over lunch, tucking him in for his nap, returning again for dinner, and then saying goodnight at bed time. The night before he died, my brother, sister-in-law, and their four kids came to visit. It was loud and lively as each grandchild took time to tell him about their latest developments. We all planned a birthday party for my twins who would be in Arizona over spring break with my husband and oldest daughter. I tried to connect with my family on FaceTime so they could visit with grandpa as well, but my husband didn’t answer the phone.

When I left that evening, I paused under a large tree next to my parking spot. It reminded me of those I climbed as a kid, while my dad simultaneously watched my brother on the soccer field and made sure I was safe. I thought about going back inside the rehab facility. I almost did. But, I decided to wait. I would spend the next week by his side; talking, asking questions, making sure he was OK.  I would help him get better, then we would spend time together over spring break, and figure out a way for him to see the Diamondbacks play one last time. Instead, he slipped away quietly the next morning with my mom by his side and his beloved Diamondbacks on TV.

My dad was gone and I was left with so many questions. Why didn’t he wait just a couple hours for me to return? Why didn’t he wait to say goodbye to my family? Why now? It hurt so bad that for days I felt like I couldn’t breathe–the crushing weight of grief and guilt bearing down on me. I went back and forth between feeling grateful that I made the trip out there and feeling terrible for not being there the morning he died.

I was angry with my grandmother for turning 100 that day. I was angry for having to share my last evening with him with my brother’s large family. I was angry that my husband’s hands were too full with groceries and three kids to answer the phone. Most of all, I was angry with myself because I didn’t know if he was OK. What went through his mind in those hours after the doctor’s visit? Did he give up hope? Did I set all of this in motion? Or just maybe, for my dad, it was the perfect time to let go and say goodbye.

Ten days after my dad’s funeral I returned to Arizona with my family for spring break. One quiet morning we filled a basket with plastic Easter eggs and placed it, along with a cup of coffee and some flowers, on his grave. The kids were restless so I decided to return later that afternoon on my own so I could take my time saying goodbye. I knew I would not be returning to Arizona for a long time.

While the kids napped, I trekked back out to the cemetery, hoping for some quiet time to reflect. Instead, I ended up running around like a wide-eyed, wild, five-year-old on Easter morning. Strong winds had knocked over the basket and scattered the eggs we had left earlier all over the cemetery. I canvassed the grounds, crawling under bushes, digging through the dirt, running along the fence on the outside perimeter of the cemetery, and smiling each time I found a “hidden egg.” Dad had sent me on one, final egg hunt; much like the ones he had created for me as a child. I collected all the eggs, refilled the basket, and this time put a heavy rock at the bottom. Then I read dad’s headstone one last time–still in disbelief, still searching for answers, and still unable to say goodbye and walk away.

As I stood looking at the ground, tears streaming down my cheeks, I heard the loud roar of a plane’s engine overhead. It was a small Cessna like my dad used to fly in his youth. This plane flew slowly, almost purposely overhead. I watched and waited.  Whoever was up there seemed to be watching me, too. As the plane descended even lower, it took a final turn around the cemetery, and then quietly flew off into the most beautiful sunset I had ever seen. Sometimes, the universe simply provides a metaphor when you need it the most.

I found my perfect moment to say goodbye.

Sometimes I park in the farthest spot from the entrance because my 7-year-old daughter still thinks she needs to hold my hand in the parking lot. Each time I grab her little, squishy fingers I squeeze extra tight because I know it’s only a matter of time before she catches on. Sometimes I’ll even park on the opposite side of the street so I get a few extra minutes as we walk to our destination. But, it never fails. As soon as we reach the edge of the sidewalk she drops my hand and begins to skip away.

I watch her wavy locks swing side to side as she gains speed. I don’t have to see her face to know there is a giant smile plastered across it. Shuffle, skip. Shuffle, skip. Before I know it, she is half way down the street. I yell, “Touch the hand.” That’s our code for you’ve gone too far. She sprints back and grabs my hand.

I take the opportunity to make another connection. I ask her about something that has been bothering her over the past few days. “You know you can tell me anything,” I say. Without missing a beat she replies, “Yes, but that doesn’t mean I have to tell you everything.” And there it is. Another step toward independence. And for me, another chance to figure out how to walk that fine line between letting go and letting her know I’m present.

I know the conversations with my daughter will become more difficult and the connections more rare. At least for a while. It’s early, but I can already feel the intensity those future years will bring. I remember how hard I struggled to find my place in the world independent of my mother and her beliefs. I pushed back. I pushed her away. I created distance. Then I spent my entire adult life trying to find a way to close that gigantic gap between us, longing for an intimate connection, even though our roots were always deeply tangled. It was complicated in my youth, and it still is.

My daughter sees me as another hurdle to overcome on her journey to independence. Even at the tender age of seven, she creates distance. Mother vs. daughter. It’s almost like a law of nature. But then so is her return one day. So for now, I hold my own discomfort close and watch in awe as she starts to spread her wings. And when I can find an excuse to hold her hand, even if it’s only for a few moments across the parking lot, I will. I will enjoy these fleeting moments of childhood dependence and look for opportunities to hold her close; long after the day she stops skipping down the sidewalk.

She was bent over in excruciating pain, one hand under her belly, the other hand steadied her body against the wall. I was flat on my back being wheeled out of the operating room after an emergency C-section. For a single moment, by rare coincidence, my colleague and I shared the same hospital hallway. In a flash she was gone. I was whisked away to recovery, and Christine was left gripping the hallway handrails, enduring the pains of labor.

Our daughters were born hours apart.  We experienced those first blissful days of motherhood a few doors from each other, sharing a hallway and a bond with our daughters.  We held them, fell in love with them, and dreamed about their futures, never imagining one life would potentially be cut short.

I never thought about that hallway encounter again until a few months ago when Christine shared a video on Facebook. Beautiful images of her smiling daughter, Iris, filled the screen on my laptop. Then text began to float over the images.

Degenerative. Fatal. No Cure.

7 years after we shared a hospital hallway, and a few months after her devastating post on social media, we’re driving to lunch on my invitation. Almost immediately, a date quietly slips off her tongue, August 26, 2013. I almost miss it, and then I realize this date is important. This is the day Iris was diagnosed.

On August 26, 2013, Christine and her husband Doug learned that 5-year-old Iris has a terminal degenerative neurological condition called Juvenile GM1 Gangliosidosis. There is no treatment. There is no cure.

They were completely blindsided. Despite troubles with Iris’ speech and motor skills, they were told her development was normal. Even after visiting a neurologist, they were assured nothing was wrong with Iris and that further testing was unnecessary.  Later, a developmental pediatrician told them that Iris had mild athetoid cerebral palsy. Christine remembered thinking, “OK, that’s fine. So she’ll have speech and walking issues. I can handle that.” Unfortunately, the misdiagnoses they received were common. After two years and a visit to a different neurologist, a series of new tests confirmed an accurate diagnosis and their worst nightmare.

As we’re waiting in line to enter the restaurant I start chatting about my own 7-year-old daughter. After rambling for a few minutes, I stop myself and say, “Well, you know how it is with 7-year-old girls.” Without hesitation she says, “Actually, I don’t. Think of Iris as a 4-year-old. She doesn’t really have friendships in the way other children do. She doesn’t have play dates. We were at a birthday party recently with other 7-year-old girls and they were all very nice, but she couldn’t keep up. It’s more like they are taking care of her instead of her peers.” And then it sinks in.

Juvenile GM1 is a slow, progressive disease that destroys nerve cells in the brain and spinal cord. Christine uses the words “inhumane” and “cruel” to describe the progression. She tells me they hope Iris will live many more years, perhaps even into her teens or twenties, but they don’t know how well her quality of life will be maintained. She explains that juvenile cases start getting pretty extreme by age 9 or 10 and many of the affected children lose the ability to speak, to swallow, and to move their limbs. Some become blind and deaf. The list of possible complications is frightening and extremely long.

Christine remains composed throughout our conversation. She speaks with great intelligence, understanding, and compassion. It’s only as we exit the restaurant and head for my car, I see a glimpse of vulnerability. She asks more to herself than to me, “What am I going to say if this ends tragically? I think about what I may have to post on Facebook. Right now I keep everything so positive.”

What Christine posts on social media is important. It led to the development of a foundation that she and her husband started. She tells me, “In the beginning at least one of us was crying daily. Anyone will tell you, it ruins you for a few months. Doug didn’t want to tell anyone. He was afraid someone would tell Iris or her younger brother (who does not have the disease) that GM1 is fatal. Then you start to process and you start researching as a way of dealing. My way was to organize information and be proactive about the services and benefits we could get for her.” What they also did was start fundraising to provide money for medical research and find a cure.

In the past 7 months, Christine and Doug have raised an astounding $485,000 for their nonprofit the Cure GM1 Foundation. The gene therapists and scientists funded by the foundation are working towards a clinical trial in 2017. The therapy being developed could potentially cure children in a single treatment. Christine believes $500,000 might be enough to get a drug to the FDA for clinical research trials.

For Iris, it’s a race against the clock. She takes experimental meds and follows a special diet to slow the progression of the disease. If the meds work, and they’re lucky, they will be on the cusp of when the clinical trials hit.

I ask her if she has hope for Iris. She pauses briefly and says, “My hope is measured. We know the odds. We try to stay optimistic because it’s a nicer way to live. We don’t know how much time we have left so we live day to day and focus on the small things like smiles, cuddling, dancing with her.”

I want to tell her she is a hero. That what she has done for Iris and the rare disease community is nothing short of remarkable. I want to tell her that I don’t know how she does it, and that if I were in the same situation, I would fall apart. But I know what she would say—if she didn’t get mad at me first. She would tell me that she is no hero, and that if I found myself in the same circumstances, I would do exactly the same as she has done—like most parents would do.

So what I will say is this, Christine, you are a really great mom. You’re a reminder that the very best part of parenting is about today. For all parents, that’s all we can ever be sure of.

This is Christine and her beautiful daughter, Iris.

www.sweetiris.org

I had a chance to help somebody and I chose not to. I turned my back, literally. I wish I were sharing the kindness of a charitable act, but instead I can only write about my shame.

That day, I was standing in line at the grocery store flipping through a magazine. Out of the corner of my eye I was also watching the young man in front of me. He was huddled with the checker looking at some markings on a piece of paper in his hand. His head hung low as they passed the paper back and forth.

Then the whispering began. I heard the checker say, “You’re not the only one. We had this problem earlier today and there may just be something wrong with the system.” The young man’s head lifted, he looked hopeful. “You mean it may work in another market?” Kindly she said, “No, I don’t think that’s it. Why don’t you come back tomorrow?”

I looked at his hands as she handed the paper back to him. Worn, weathered, and dirty. The type of dirt that settles into every crease and fold of your skin. The kind of hands you see on someone doing hard labor or living homeless. I looked at the total on the register. It wasn’t extravagant by any means, but in my mind, it may as well have been $500. I wanted to help. I wanted to say, “I’ve got this.” But after a year of not working, all I saw were the bills piling up. Instead, I turned my back and pretended to be looking at something else.

The people in line behind me were getting restless. Their own whispers were becoming more audible. The young man quickly apologized for having the checker bag his groceries and then quietly slipped away. He gave one solemn glance back as I stepped forward. As he walked out the door, I wondered if he had just left behind dinner.

I knew before he was out of site that I made the wrong decision. I can only hope next time I make a better choice.

We never talked about death. Not after the doctor diagnosed him and used the word terminal. Not after he landed in the hospital, or the nursing home, or while he ping-ponged in-between both. We didn’t even talk about it after his final doctor’s visit when the oncologist told him, “My friend, this is the end.” Nobody asked what that meant. They left that part up to me. Somewhere in the explanation that followed I heard the words, “A few weeks,” but they didn’t register.

That night I had a very vivid dream. In the dream, my dad was seated in a wheelchair looking at me with the same stoic expression in the photo above. He didn’t say a word. He just sat looking right through me. His wheelchair, a new appendage, was parked at the entrance of a dark tunnel. It was my own voice and the words, “Are you afraid?” that abruptly woke me from the dream. Hours later he was dead.

I regret we never had a conversation about death. I wish I knew if he was angry, or grieving, or at peace that day in the doctor’s office. I wish I knew if he thought about it every minute of every day leading up to that visit, or if he tried not to. Most of all, I wish I knew if he was afraid.

One year after the anniversary of his death, I miss my dad more than ever. It seems like today I should be celebrating his life, but all I can think about is his death and those final weeks. It was during those last nights that I eulogized his life any time I closed my eyes.  I could not make the words stop. They washed over me, drowning me in sorrow and smothering me with fear, even though naively I believed we had more time.  I was convinced we had conversations to start and finish, the twins’ birthdays to celebrate in April, our family visit during spring break, summer plans to make, and most certainly, one, final Diamondbacks game in person.

Maybe I never asked dad if he was afraid because on top of everything else, the answer to that question would have been too much to bear.  For me, grief and reality were like star crossed lovers, never meant to coexist. Denial, on the other hand, was a warm embrace from a long-lost friend.  I held on for dear life and didn’t want to let go.  I still don’t.

My dad was one of the most important people in my life, yet the intimate conversations I wanted to have with him–especially toward the end of his life never happened.  It always felt like there would be a better time.  I always assumed I had more time.  I never gave it a second thought until a year ago, April 1, 2014.  The day we buried my dad. The day my time ran out.

This is Vitas, my dad.

In an instant, my year-long impression of both of them vanished.

She threw her cigarette onto the sidewalk and wiped her mouth with the back of her hand. I watched her stomp back into the kosher deli with her usual wide-eyed expression that always made me feel like something was slightly off. I wondered if she washed her hands before she started making sandwiches again.

His filthy, tattered clothes hung for dear life on his frail frame. His face was covered with a grey beard and dirt. So much dirt. He was homeless and spent most of his day under a tree in the park next to my morning coffee stop. It was more of a street island than a park, but people used it to walk their dogs, wait for the bus, or let their kids play in the sand. They all stayed far away from him. Most of the time when I walked by I turned my head to avoid seeing his dirt-caked butt crack. I passed him almost every day for the last year and I couldn’t tell you what his face looked like. I never once thought about asking him if he was hungry.

“Excuse me sir, are you hungry?”

That morning the sound of her voice startled me. It was soft and kind. She didn’t sound crazy. When she called him “sir” she meant it. It made me look at him. Really look at him. That morning he was no longer faceless. He was probably hungry, but he said, “No” and continued to limp by, dragging one foot slowly behind the other. That morning I was reminded how a simple act of kindness can change everything, even a year-long impression that couldn’t have been more wrong.

It took me almost two weeks to get up the courage to go back and ask her if I could take her picture. One afternoon I parked my car outside the deli, rolled down my windows, and waited. It wasn’t long before I smelled smoke and when I looked up from my phone, sure enough, there she was.

She told me Norman is schizophrenic and has been on the streets for about 10 or 11 years. She tries to help him out whenever she can. She said I could come back and find her anytime if I didn’t like the picture. I love the picture.

This is Gina.