Photo Essay

The Story of Us

The Story of Us

My youngest daughter Amy came to me one day and said, "Mom... I'm pregnant". She was 19. She walked into a friend's barn, saw a boy sitting on a bale of hay, told her cousin, "I'm going to marry that guy", and did just that. Regardless of what we teach our children or hope for our children or want for them, at some point they begin making adult decisions with teenage brains. And so it went... have a baby, get married, have another baby, buy a house. And in the center of these changes was an alcoholic father. He was a happy drunk, but a drunk none-the-less, a product of the abuse of his childhood. They say that 20% of the abused make it out. Keith did not. The loving husband and doting father Amy had sculpted in her mind never showed up and divorce came their way.

Amy took an apartment and returned to school. In December of that year Matthew, her youngest, ended up with a septic hip and an extended stay at Children's Memorial in Chicago. Miraculously, his leg was saved and after extensive home care, he returned to full health. Still, things were not all smiles in their little apartment. The boys were angry, they missed their father, their house, their dog, and the only life they'd ever known and told her that... often.

So, Amy was absolutely NOT looking for love. She was barely hanging on when a man from her apartment complex walked up one day and said, "Hi. I'm Scott". He'd been watching her from his balcony for several months... this goofy mom who was skating around in the parking lot with one son and playing catch with the other at the same time. He saw in Amy the mom he'd always wanted. Scott was shuffled around growing up and lived a life few would ever claim willingly. He saw her heart in her interactions with the boys... a heart that spoke to his.

Though Amy brushed him off in the beginning, and though her plate was jammed full, a relationship began and marriage plus her degree followed a year later. Justin and Matthew were leery for a respectable amount of time but grew to love the man sitting next to them on 'Meet the Teacher' night... the man who came outside to 'speak' to the local bullies when needed... the man who taught them 'man' stuff and kissed them goodnight.

Scott is an executive chef and a job opened up in Denver. So, in the middle of a blizzard in December 2009 they headed out, Amy driving one car with the boys, Scott driving the moving van towing another car. The van gave up the ghost somewhere along I-80 near Des Moines, IA on Sunday night with temperatures cold enough to freeze diesel fuel. Three days later, they limped up to their house in Littleton.

Amy wanted to work and though she had a degree, she had no experience. More than a year later, she got her break. However, within a month, the owner of the company Scott worked for turned it over to his son who quite unceremoniously fired Scott. It was months before Scott found work and the tension at home became palpable. The boys were struggling to find their social niches, Amy was working all the overtime she could get but the bills were piling up with no end in sight. Finally Scott found work and the digging out process began.

A blended marriage is never easy and Scott and Amy's was no different. So the next years were spent working out the kinks and finding their stride. Then one night, Scott told Amy he was bleeding. She asked where. He said everywhere... mouth, nose, rectum, in his urine... slow persistent punchy oozing. They scheduled an appointment with their family doc and very quickly he diagnosed Scott with hemochromatosis and Factor 10 hemophilia. Both are genetic and lethal in tandem. Hemochromatosis is the body's inability to process and excrete iron that is released as red blood cells die and are replaced. The excessive iron begins imbedding in tissues and organs. Factor 10 hemophilia is the inability to form blood clots, thus the episodes of bleeding.

Because of the rarity of these two disorders in tandem, Scott was referred to a Harvard educated hematologist in Denver, the University of Colorado Denver, and the National Health Institute in Bethesda, MD. There is no cure and very few treatment options. The two that are available are 1) blood-letting, and 2) plasma infusions to supply the absent clotting factors. In August 2012, Scott had an episode of bleeding into his right upper arm and was taken to the hospital for plasma infusion. From the beginning of treatments, every time Scott was given plasma he would become violently ill for 24 hours. This time it was much worse. He had a severe allergic reaction and was told it was no longer a treatment option. He was given 6 months to live.

That fall, Amy learned she needed back surgery for a congenital anomaly, an L5-S1 spondylolisthesis that came from my gene pool. It is produced from a left and right pars fracture. The end result, vertebrae that are no longer anchored together causing forward displacement of the upper bone. Amy was afraid to have surgery, but the symptoms could no longer be ignored. Beyond the obvious pain, she was developing 'dead' spots along her right leg and she started falling. Out of options, she went to see a neurosurgeon who told her it was surgery now or a wheelchair for life. Amy chose March 1 as the day of surgery. Because of Scott's prognosis, we planned a two-week trip to Denver months in advance. Though Scott promised Amy he would be there for her, if the doctors were right, it was a promise Scott would not be able to keep.

But Scott had plans of his own. He was there... in the surgical holding room, at the door as she was wheeled into OR, watching the clock in the recovery waiting room, with her as she was wheeled into her room, with her through the vomiting, with her for her first steps, with her through the pain and fear, with her until she was discharged home.

Scott cried inconsolably as Amy disappeared behind the OR doors. He refused to sleep or leave her side through the thick and thin of it. This man who had lived into a future medicine said would not be his, willed himself to live to care for Amy. This love is evident in every image they allowed... images that will be cherished in the years to come.

32 responses

  • Fred Moskey

    Fred Moskey   gave props (19 Mar 2013):

    A very touching story! Well done Bailey Cooper!

  • Carol Arntsen Masiak

    Carol Arntsen Masiak gave props (19 Mar 2013):

    so powerful and so well done

  • Cheryl Andrews

    Cheryl Andrews   said (19 Mar 2013):

    Bailey, how tragic and beautiful. I'm glad they allowed these poignant photos to be shared. I am humbled by their battles and victories and wish them more miracles.

  • Bailey Cooper

    Bailey Cooper   said (19 Mar 2013):

    Thank you Fred for this generous nomination. Some lives seem so easy. Others are filled with an almost continuous onslaught of pain and problems. Unfair is the word that comes to mind. Yet both Scott and Amy stay the course with few complaints. It is inspiring to watch. It will be very hard to say goodbye to this amazing man when he is called home.

  • Bailey Cooper

    Bailey Cooper   said (19 Mar 2013):

    Carol ~ Thank you for taking them time to meet Scott and Amy and for your kind words regarding their story. It is, as always, greatly appreciated.

  • Michele Wambaugh

    Michele Wambaugh   said (19 Mar 2013):

    Magnificent! Thank you so much for your sharing it! (My fav uncle has "only" hemochormatosis & gets reg blood-letting.) Big Hugs, Bailey!

  • Saroj Swain

    Saroj Swain gave props (19 Mar 2013):

    great... Vote!!!

  • Bailey Cooper

    Bailey Cooper   said (19 Mar 2013):

    Cheryl ~ Thank you for viewing and commenting. An intereting side note: in 2012 Scott was in treatment for a blood letting and plasma infusion. The room was like a ward where others were receiving chemo and other treatments. The man in the recliner next to Scott had the same unusual last name and a conversation began. As it turned out, the man was Scott's cousin Mark whom he'd never met. Mark worked for the Billy Graham ministries.

    As their treatments were wrapping up, a very old man was brought into the infusion room and wheeled next to Mark. It was Billy Graham. He was in Colorado as President Obama's spiritual advisor during the Aurora shootings and came to the hospital to visit Mark. Mark introduced Scott to Rev. Graham and he prayed for both Mark and Scott.

    The next day Scott received a strange phone call that gave him some rather odd instructions to be ready to go to Buckley Air Force Base to meet President Obama. When they arrived, Scott left his car outside the gates, was taken into a hanger and told to wait until he was called. When that time came, he was brought before the President and introduced to him. Billy Graham was with him and told him about Scott's condition. Then the President and Rev. Graham put their arms around Scott and prayed with him for healing. When the prayer was over, President Obama looked at Scott and said, "You will be healed".

    Just one more example of the miracles that have touched their lives. Like you, I wish them many more.

  • Bailey Cooper

    Bailey Cooper   said (20 Mar 2013):

    Michele ~ Thank you darlin for your kind words and your time. Also, very interesting about your uncle. Hemochromatosis is far more common than I ever knew. I only cared for one patient in 25 years that had it listed in her history. Not unlike sickle cell anemia v. sickle cell trait, the less severe form of hemochromatosis result from incomplete gene dominance and life goes on pretty much as normal. That your uncle is in treatment tells me his case is more severe, so my heart goes out to him.

    The purpose is the blood-letting is to remove older red cells that will die and release iron with new ones. A blood cell lives for 120 days, so the thought is, after several initial lettings, mostly new cells will be circulating. Then quarterly blood-letting should keep it at bay. Scott's problem is that the constant tissue bleeding related to the hemophilia causes a never-ending release of iron as these red blood cells die and spill iron. That's why they give plasma... to prevent the bleeding and the vicious cylce the two conditions create. When Scott finally developed the allergic reaction to the plasma, it was taken off the table as a treatment option. Subsequently, the bleeding now goes on unabated, making blood-letting pointless.

  • Bailey Cooper

    Bailey Cooper   said (20 Mar 2013):

    Saroj ~ Thank you for your vote and time. It is appreciated.

  • Ted Anderson

    Ted Anderson   gave props (20 Mar 2013):

    You are as good a writer as you are a photographer, and that speaks volumes. A powerful piece. Thank you.

  • Geoff Plant

    Geoff Plant   said (20 Mar 2013):

    A beautiful moving story Bailey WELL DONE . Thank you so much for sharing this story with us all

  • Cedric Tesson

    Cedric Tesson gave props (21 Mar 2013):

    You are definitely my favorite JPG photographer !

  • Susan Littlefield

    Susan Littlefield   gave props (21 Mar 2013):

    An incredible story of love and hope. Thank you so very much for sharing it. My uncle has hemochromatosis, so I was touched even more. You did a beautiful job of telling this story, and your photos are an excellent addition. Definitely gets my vote!

  • Deborah Downes

    Deborah Downes   gave props (21 Mar 2013):

    Powerful images and words. Both deeply moving and inspiring. Thanks for sharing. Sure gets my vote.

  • Nancy Richard

    Nancy Richard gave props (21 Mar 2013):

    A touching and powerful story. The photos are heart rending and the story beyond belief.

  • Bailey Cooper

    Bailey Cooper   said (21 Mar 2013):

    Ted ~ Their story could actually be a novella, so it was difficult chosing what to include. The complete story would break your heart. But it is not a story of defeat... rather a story of overcoming. Scott is such a good man that I struggle many days to make sense of it. Amy is a wonderful mother and the hardest working woman I know. She gives selflessly to her patients and touches their lives.

    My desire was to honor them through their story. In reading and commenting, you have done just that. So... thank you.

  • Bailey Cooper

    Bailey Cooper   said (21 Mar 2013):

    Geoff ~ In a world that spins relentlessly on its axis, in a world that is bombarded with negativity and discontent, I think it is important that we unearth the good in this barren wasteland and share it with others. I think it is a way of centering us once more and I think it feeds the soul.

    Their story is sad but it is also triumphant. It speaks loudly of the human spirit and unconditional love.

    So, thank you Geoff, for reading, commenting, and eposing your heart. I appreciate your words.

  • Bailey Cooper

    Bailey Cooper   said (21 Mar 2013):

    Cedric ~ That is one powerful compliment, one I am not sure I am worthy of. But I embrace it and hope I am able to live into it as time becomes our history. Thank you for so very much.

  • Bailey Cooper

    Bailey Cooper   said (21 Mar 2013):

    Susan ~ It is amazing for me to discover the prevelance of hemochromatosis since Scott's diagnosis. When I was working on my bachelor's, it was a disease that was never even mentioned. I hope that your uncle's case is a less severe form. Blood-letting is NO picnic.

    Scott and Amy are both in their 30's. Scott was single until he met and married Amy. As many of us do, he ran from the life he'd known as a child and never returned. After he graduated from Culinary School, he set about seeing the world, learning cuisines, and becoming fluent in several languages.

    When they met, he was the Executive Chef at Balmoral Race Track. Neither were looking for a realtionship no less marriage. Scott had carved out his life and had known success. Their marriage allowed Scott to take a hard look at his running and the true meaning of life.

    So, during the less eventfully middle years of their marriage and having been a father to Amy's boys for some time, Scott told Amy he wanted to have a baby. While they were in the planning stages, he was diagnosed. He would never father his own child and it was devastating news for him. Still, he smiles and engages and completely supports the boys and Amy regardless of how he is feeling (intolerable most days). He also NEVER misses work. It is stuff like this that brings the tears.

    Thank you Susan, for reading, looking, and sharing your thoughts. Thank you, in many ways, seems just not enough.

  • Bailey Cooper

    Bailey Cooper   said (21 Mar 2013):

    Deborah ~ I originally took the pictures, then wrote the story and posted it as sort of a recitation of lineage and memoir for Scott, Amy, and the boys... marking this life and this time as meaningful. I never expected a nomination or such an outpouring. I was first stunned and then very moved.

    We will all face sickness and death at some point. These will be our images and story at that time. For me, it is doing this hard time with dignity and grace as Scott and Amy have that is my goal when this time comes to me.

    The world is good. It is just a matter of looking in the right places. Thanks for your words and thoughts and for your generous compliments. These are appreciated.

  • Bailey Cooper

    Bailey Cooper   said (21 Mar 2013):

    Nancy ~ Such a kind and thoughtful post. I think when we respond to such stories it brings back similar personal memories of spent days or ones that will surely come. Hardship is a human condition. No one is exempt. It is what we do with these times that helps us keep on keeping on.

    I may know what Scott is going through but it can only be a superficial knowing. I can't feel it. I don't live it. What I do feel is respect and compassion regarding his response and Amy's.

    I think the point to reading or viewing such stories is to hold it in memory then use it as a map to find your way when darkness falls.

    Thank you for your thoughtfullness and generous comments. We all appreciate them.

  • Rob Linsalata

    Rob Linsalata   gave props (26 Mar 2013):

    Bailey, I've been crying for the past five minutes, and I really don't know what to say, other than thank you. You have reminded me about the preciousness of every moment, of how life is too short for nonsense, and of the fact that real courage is nothing more than the improbable power of love in the face of heartless realities. Love fights asymetrical warfare against the odds. And wins. Love is every David against every Golliath. Every Don Quixote. Every one of us. May God bless you and Amy and Scott and Justin and Matthew. May the power of your love and the strength of your hearts overcome these and all the heartless and sometimes ridiculous odds that life throws at you.

  • Braden Gault

    Braden Gault gave props (26 Mar 2013):

    gave props

  • Bailey Cooper

    Bailey Cooper   said (27 Mar 2013):

    Rob ~ Thank you for this beautifully written addition to the dialogue. Your words are the bones of this thing... the size of it, the absurdity of it, the injustice of it. There are those who engage it with such strength and grace I am left without words that touch that beauty. Standing strong and refusing defeat is a fearsome weapon. Taking back ownership surrmounts realities and writes the final ending. And what follows is tears... tears of joy and hope.

    Again, thank you for seeing the positives and beauty in a story of two against the odds.

  • Bailey Cooper

    Bailey Cooper   said (27 Mar 2013):

    Braden ~ Thank you for taking the time to read and post. Also... welcome to JPG and congrats on the pink bundle heading your way.

  • Litz Go

    Litz Go gave props (27 Mar 2013):

    I love you as a photographer and much more as a writer.You always captivate me. I wish Scott and Amy good luck and good health.

  • Bailey Cooper

    Bailey Cooper   said (28 Mar 2013):

    Hey Litz ~ So good to hear from you. I do appreciate your generous comments and wishes for Scott and Amy. They will also.

    These photos are unique... something not often recorded or shared. When I was in nursing, if a person got caught taking pictures, it was a trip to the principal's office. Healthcare didn't want documentation of anything. Now that really can't stop it with cellphone capabilities these days. So I think they've given up.

    Because of Scott and Amy's situation, I knew Amy would want these moments recorded and kept bringing the camera back until she got comfortable with the notion. What I love most about these unique images is the 'love' that resides within. Even more so with the words that shape their story. Again, thanks Litz.

  • Geoff Plant

    Geoff Plant   gave props (19 Apr 2013):

    BEAUTIFUL WORDS ACCOMPANIED BY BEAUTIFUL PICTURES

  • Bailey Cooper

    Bailey Cooper   said (19 Apr 2013):

    Thank you Geoff for the nomination, your time, and your kind words. Each is greatly appreciated.

  • Kelly Nichols

    Kelly Nichols   gave props (14 Aug 2013):

    Heartfelt story that goes to where the true heart lies. Wonderful story of love, hope and perseverance. Bless Scott and Amy for allowing you to share their story. It humbles and inspires.

  • Randy Turoff

    Randy Turoff   gave props (21 Sep 2013):

    Both the pictures and the words were powerful. Tragic and beautiful.

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