The Story of Us
19 Mar 2013
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.