Tag Archives: death

Fate’s Waiting Room

Inside the sterile expanse
Where nameless faces wait,
Sharing a moment in time,
Trapped together for eternity.

The place where agony-filled air
Suffocates their dreams,
As the icy hands of fate
Slowly strangle life to death.

Anxious eyes scan the room
For a savior in white.
Rhythmic moans and stifled cries
Sing the melody of despair.

Squeaky wheels roll forward
With delicacies on a silver tray.
A token consolation prize
For inconsolable souls.

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The Christmas I Thought Was My Child’s Last

December 2014 was one of the hardest months. Katherine had been given her second 90-95% diagnosis of Infantile Neuroaxonal Dystrophy (INAD) from another top neurologist. She showed signs of regression that are typical for INAD patients – loss of skills (she no longer was able to climb and asked for help getting up on the bed), seizure-like activity, and she started saying she couldn’t see very well in low light. We found ourselves in the hospital for four long days of testing as others were putting up their Christmas trees and baking cookies.

IMG_6861 The only things standing between what appeared to be the inevitable and hope were a miracle and a whole exome sequencing test. We wouldn’t get results back until February.

A few months earlier I ran into a dear friend’s mother whom had recently lost her husband to lung cancer. Full of grace and eloquence, she passed along some wisdom as our tear-filled conversation concluded:

As my own mother battled cancer, she taught us that how we leave this life is as important as how we live it, and that we should try our best not to grieve the dying until they are gone. This is very hard to do, though, I know.

Christmas is especially tough for the caregivers of those with a terminal illness.  Amidst the magic of a season rich in faith, family, and tradition, your own pain is amplified against the backdrop of a world that is enveloped in a warm, merry bubble of happiness and joy. For me, this time of year hurt a little deeper, especially with Katherine’s recent regression.

As I walked down the aisles of the grocery, slowly and methodically gathering ingredients for Christmas dinner, overhead Bing Crosby was singing “I’ll Be Home for Christmas,” told from the point of view of an overseas soldier during WWII, writing a letter to his family:

I’ll be home for Christmas
You can plan on me
Please have snow and mistletoe
And presents on the tree.

Christmas Eve will find me
Where the love light gleams
I’ll be home for Christmas
If only in my dreams.

I looked around at the smiling faces as these words blared in my head and realized I was shopping for what I believed was my child’s last Christmas dinner; there would be no more snow and mistletoe, or presents under the tree. The ghost of Christmas future was whispering my worst nightmare in my ear: I would be a childless mother for the rest of my life.

Right then and there, in the middle of a grocery store aisle filled with singing reindeer and Christmas tree shaped candy, I came face-to-face with my child’s fate and my future. I openly grieved for the life she’d never have, for the Christmases we’d never get to share, and the short motherhood I’d experience. The cart supported my weight as I maneuvered my way to a place where I could be as alone as one can be in the middle of the holiday section at a grocery store a few days before Christmas.

Somehow I managed to walk myself up the the check-out and pay for the items. As I drove home, I reminded myself of what my friend told me a few months earlier:

As my own mother battled cancer, she taught us that how we leave this life is as important as how we live it, and that we should not try our best not grieve the dying until they are gone. This is very hard to do, though, I know.

Yes, I know. So tough. It was nearly impossible.

I managed to cook one of my best meals ever that year, and Katherine looked so lovely sitting at the table, basking in the glow of candlelight, love, and Christmas magic. Across the table I was savoring and imprinting this memory – praying the warmth and love I felt in the moment would get me through the coldest days ahead.

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Connected To The Past

Timing is everything in life.  Just as those who came before us, we all have a ticking clock over our head.

Lately, I’ve frequented antique shops scouting out props to use for food photography projects and collaborations.  More than ever I feel a greater connection to the past.  I find it impossible not to think about the lives, conversations, relationships, tragedies, etc. of the previous owners as I touch, repurpose, and use their personal household items.

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My most recent excursion brought tears to my eyes when I stumbled across a beautiful wooden cradle sitting silently in the corner. That cradle belonged to somebody else’s Katherine, and the bond between a parent and child is timeless.  What was that baby’s story?  Did she have a long, healthy life, or did she die young from Scarlett fever, influenza, an appendicitis, or a rare disease?

Although many medical advancements have occurred since that cradle was made, it’s hard not to feel stuck in the past when doctors say they believe your child is slowly dying of a disease they cannot diagnosis or treat.  Intellectually, I grasp and appreciate the fast-paced nature of genomic medicine; emotionally, however, I fear my own daughter’s timing may not be on the right side of science.  Then again, children still die from influenza.

None of us can escape death or its timing.

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Silhouette of Katherine Belle by Clay Rice.

As I closed my eyes and filled my mind with the sound of giggles and the tender moments shared between a mother and her child, I was reminded that hope is the only thing stronger than fear.  Yes, I am afraid, but my hope and faith are much stronger than my fears.

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A Mother’s Death and Resurrection

In August 2012, just one month after Katherine Belle’s first birthday, I found myself sobbing hysterically in my doctor’s office following a series of scary panic attacks. “Was there much stress in my life?” she asked. “Yes,” I responded. “My grandfather recently passed away and the chief of staff at work had suddenly died just two days ago.  And…and I am worried about my daughter.”

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At daycare, Katherine Belle made her mark in the nursery as the fastest crawler of the bunch, even earning the nickname “Flash” for her speed. She was reaching developmental milestones ahead of time and I recall worrying that she would be walking as early as nine months.

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Instead, as the months passed, I watched her peers, and eventually younger children, take their first steps while my daughter continued to crawl at their feet.  I felt silly to worry.  After all, she was only 13 months old … then 14 months … then 15 months.  Many moms reassured me that their own children did not walk until later. My husband’s aunt did not walk until she was almost two. Research reassured me that walking as late as 17 months was within the normal developmental range.

“Any day now…” and “you will wish she was not walking when you are chasing her all over the place” were common phrases I heard during this time.  When she still was not walking by 15 months old, I decided to seek the assistance of physical therapy. I silently struggled greatly during this time. My motherly instincts told me that something was not quite right.  Despite weekly visits to occupational and physical therapists, she still was not walking as she approached her second birthday.

I sought solace in the outdoors, taking daily walks on my lunch break at work to observe and photograph the beauty around me.  Only then was I able to stop worrying and enjoy a moment of peace. Photography was my therapy, my outlet, my voice. I looked for hope everywhere and would take a photograph to remind myself that hope existed and was right in front of me; however, I needed my camera to show me.

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But still, there were many lonely, stormy days.

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I did not want to worry my husband too much with my fears.  Truthfully, I could not even say what I feared, except that I just had a feeling that something was wrong.  What, I did not know? I held out hope that she just had low muscle tone, which she obviously had. And sensory processing issues, which she had as well. But as she approached her second birthday, I began to ask myself the really hard questions.  Why wasn’t she walking?  Would she ever walk?  Is there something more we should be doing? Is there a more serious underlying issue?

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At her two-year appointment in July, her pediatrician nervously said, “And now for the hard stuff of today’s visit.  I am concerned that she is not walking independently.  Did you have a difficult birth, any head injuries or an accident?”  “No,” I responded with a lump in my throat.  “Well,” he continued, “I want to refer you to a neurologist just to be sure. She really should be walking at two years old.”

In August, we met with two neurologists and told them her history.  They agreed it best to perform an MRI in a couple of weeks to see if there was anything going on in her brain.  We were out of town and decided to visit the local zoo the next day to lighten the mood and have some fun.

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It was blistering hot that day, so I took Katherine Belle to stand in the shade while my husband stood in a long line for tickets. We were sitting on the curb when a young man in a wheelchair looked over at us and backed up beside us.  His name was Donny and he asked how we were doing.  We made the usual chit chat about the weather and the zoo.  He asked where we were from and why we were in town. I told him we were visiting the local hospital because our daughter could not walk and we did not know why.  He shared his personal story with me.  There were terrible complications during his birth. He died briefly before being resurrected.  His mother struggled.  There were many surgeries. His life had been very difficult, but he was alive and telling me his story. He had strong faith in God and believed there was a reason he had been brought back to life.  His body may have been paralyzed but his mind was sharp and he was very articulate.

Then he said something to me that I will never forget: “I knew you were a kind soul and that you would not be afraid to talk to me because of my condition. I believe God put us together today so I could talk to you.”  Lastly, he looked me in the eyes and said, “Everything is going to be okay.” A moment later his guide came up with their tickets and he was gone.

I sat on that curb and cried. I cried so hard that I could barely breathe.  I felt as though Donny was the first person who truly understood how much I was suffering — even more than I realized. At that moment, out in the open and in front of a very crowded zoo entrance, I let it all go. A year’s worth of worry and anxiety flowed out of my body.  My husband soon appeared and took me to the gift shop where I was able to gain some composure.

In my husband’s January 27, 2014, post, “Faith. Hope. Love.,” he describes what followed next:

On Friday, August 30, 2013, I received a phone call that would forever change my life and the lives of my beloved wife, Glenda, and daughter, Katherine Belle. Medical terminology and nuance aside for the moment (medical terminology and nuance will fill future posts), the call was to tell us this: your daughter is going to die. This was not in some philosophical sense that “we are all going to die,” or a homily that “no one is promised tomorrow.” It came with a medical explanation of how she was currently dying, and the only promise was that tomorrow — or tomorrow’s tomorrow — would never come for Katherine.

I had prepared myself for bad news, but nothing prepares a mother for the news that her child is going to die of a rare genetic disorder.  Now I fully understand why the mind erases tragically painful moments.  The pain is enough to kill a person.  As my legs gave out beneath me, I fell to the floor in utter despair and heartbreak, screaming at the top of my lungs that this was not really happening, I have no doubt that a part of me died with this news.

I do not remember much after that moment (and would not remember much of the next few months), except looking over at my daughter on the floor beside me and seeing her sweet smile.  I felt dead and was told she was going to die, but she was alive in that moment. She was hungry. She needed her diaper changed. She wanted to hear a bedtime story and hug mommy and daddy before going to sleep.  A voice told me that I had to stand up and take care of my daughter.

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I let Katherine be my guide each day.  I would ask her what she wanted to do and we simply did it.

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Each day became a little easier and my breakdowns came less frequently. Once again, I turned to my camera for comfort.  When I looked into the lens, I was living in that frame.  There is no tomorrow in that moment; just that second captured for all time.  I can blur out the background and focus on my daughter’s smile, the twinkle in her eyes, the space between her two front teeth, the dimple in her cheek or her little hands splashing in the water.  The world stops and I am at peace.

At the end of each day I download my photographs.  They show me a happy girl.  Despite my grief, I see that I am giving her the life she deserves.

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I do not know what tomorrow brings.  None of us do.  I believe in science, prayers, hard work, positive thought, and the healing power of love.  Each day I share my photographs with friends and family and tell them a story that does not always require words, and that sometimes cannot be expressed with them. It is a story of faith, hope, love, and determination.  As we continue ahead on our journey toward a diagnosis, I see a brave and thriving girl who is progressing, not regressing.  I see a happy and joyful child who meets every obstacle or challenge with the biggest smile and the most positive attitude. I see a future with many more photographs of accomplishments, milestones, and laughter. In all of my pictures, I see faith, hope and love.  Above all, I see an abundance of love.

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The past few months have been excruciatingly painful and tough, but I have learned a very valuable lesson: You never know what the next second of your life will bring.  My daughter guides me daily and reminds me that each moment is precious. Each day is a gift. She has taught me the significance of the quote, “We do not remember days, we remember moments.”  I have learned to enjoy and live in the present because it truly is the only moment that matters.

Part of me died in that Cincinnati room, but I find myself resurrected. I am a new person with a new perspective — and I have the sweetest little girl to guide me in my new life.