You may ask why would I want to tell such a sad story and to that I would give several reasons. First, I want to share the memory of my daughter with people in hopes of her being honored and remembered. Secondly, I want to introduce to you the virtues of a great organization like Hospice. I want to tell her story because most of us think that bad things happen to other people, and because if or w
hen something bad, unexpected, unreal or even something natural happens to you or your loved ones, you know where to turn. I want to help a cause, a cause that many of us don’t know about until you find yourself in desperate circumstance. My cause is Hospice… I was both fortunate and unfortunate to have had Hospice in my life, a cursed blessing so to speak. The end result is that I credit hospice with keeping me sane through the most difficult period of my life. When we opened Willow Creek last year, my husband and I noted that this is the 9th establishment that we have worked in together. We met in 1996 while working together in Cherry Creek and spent most of our marriage running other people’s restaurants. In 2001 as we were living & working seasonally on the island of Nantucket for the third year in a row, I was pregnant with my middle child, a darling creature named Ellie. Born just 5 days after 9/11, the world was in shambles but I was in baby mode. I had waited 4 years to have our second child and I couldn’t wait for her arrival…crazy world or not. The morning of Sept 16 came around and during a routine doctors visit I was told that something was wrong and that I needed to have surgery “right now” to save her life. In that moment, everything became surreal….slow motion even. There was talk of low fetal fluid, slow heart beat, a heart murmur… I was watching a nightmare unravel before me as if I were on the ceiling looking down. At first I was in denial, thinking that all these people around me were just over reacting, I needed to just be calm and think positive. I remember thinking, ‘that sort of thing happens to other people’. As I was being prepped for a c-section, I refused to believe that there was anything seriously wrong with Ellie. In the deepest, darkest part of my brain…. I could not have imagined nor predicted the nightmare that was coming. The O.R. had an uncomfortable vibe for me this time… I had previously had a c-section with my son Greysen, giving in only after 48 hours of decent labor. The doctors were light hearted and joked around with my husband and I. This time there was no joking or light heartedness… The only spoken words between the nurses and doctors pertained to getting Ellie out… I waited a few seconds to ask the question whose answer I was scared of. “How Is She?”
After a pause, my nurse came over to me, her mouth covered by a mask and her hair in a cap, only eyes to convey the sadness of the situation. I could not see her mouth moving but heard the words anyway…. “We need to run some tests before we can say but it doesn’t look good, your baby is going to die”… I looked around for Curtis because he could see what was going on in the room. When our eyes met, the look on his face confirmed her words…. I knew in that moment that life as we knew it, was over. We were told that Ellie would live just hours or maybe days. She needed to be moved to a hospital in Boston that was equipped to deal with the situation. We were rolled into the hallway outside the NICU where they quickly baptized her before taking her away …..In the moments that followed a lifetime of memories were created for me; a bible, a brief blessing, the snap of a Polaroid, the sadness on the faces of my husband, son and mother, the smell of my sweet baby briefly against my cheek, the beeping sounds and blaring lights of the NICU, the stream of tears I couldn’t control, the kiss before they whisked her away. I was told I would have to stay behind because there were not any available beds in Boston. Devastation doesn’t begin to describe the events that had just taken place. In retrospect It still seems so surreal. Curtis was desperately trying to get me moved to Boston but not having any luck. I remember hearing him say to someone “If we only have hours or days to spend with our daughter, how can you expect her mother to stay here? “ Our fear was that Ellie would die all alone. A few moments later a social worker from hospice walked into my room and said she could help. She made a few phone calls and within just a few minutes I too was being transported to Boston. I don’t remember that woman’s name or even what she looked like…. I will forever remember the stress that she eliminated for me in what I consider to be, one of the worst moments in my life. Over a month in the NICU at Boston Children’s Hospital … Curtis and I were given a dorm style room to sleep in located just outside the NICU entrance. Our son, Greysen, was staying in a hotel across the street with my mom. I lived each day in a leather recliner, positioned next to Ellie’s crib-like incubator, leaving only when they asked me to, usually for them to run more tests. The glaring issue was that her heart had a large hole, was misshaped and she could not live without the aid of oxygen. It took weeks to get test results back, but in a room filled with 15+ doctors and our parents we were given the news. Ellie was missing a large portion of the midsection of her 15th chromosome (Known as a Chromosomal Deletion). A random occurrence that happened when the egg met the sperm…No good reason to explain what was happening…just “a random occurrence”. “She should have been a miscarriage”, were the words used and why she wasn’t, was in question. There were no case studies to reference; no other human being has ever been born with the same deletion. There were no answers; we could only deal with the obvious problems as they made themselves known. For now it was her heart. Feeling hopeless, tired, incredibly sad and missing Greysen, we longed for our old life back. Working seasonally at this point, Curtis left his job on Nantucket to stay with us in Boston. We knew that soon we would have to make some decisions regarding our future. Ellie didn’t seem to be getting any worse; in fact she seemed to be thriving. I fought to have her feeding tubes removed so that I could hold and nurse her. Each day I spent in that NICU, I held her and slept with her on my chest. It didn’t feel like she was dying, but everyone said she was. We were given options… we could give custody to the state, leave her in the care of the hospital, visit when we could and resume our lives as usual. This would free us from any financial obligation or decision making. We saw several children there who held that fate. There are so many reasons why that would never work…. First because we did not live in Boston, because we worked seasonally on Nantucket, because we were running out of money….and mostly because I could have never left my child behind. She was part of me, like a lung or my heart. We asked to be discharged. Curtis and I agreed that if she was going to die… we preferred the comfort of our own surroundings to the hospital environment. A social worker from hospice showed up to help make the arrangements and within a few days we left Boston and went to New York to stay with Curtis’ grandmother in the Hudson Valley where we were placed on the Westchester Hospice to wait out her fate. Having Ellie at home with us was incredible and within a few days things started to feel normal. Libby, Curtis’ grandmother was so welcoming and helpful, we felt at home for the most part. It was an awkward time for us, waiting for our child to die so that we could resume our lives, it felt unnatural and we longed to have a place to be. We had nowhere to go but we began to look for our next job in hopes that Ellie would prove everyone wrong and hang in there with us. After a month in NY, Curtis accepted a chef position in Colorado. It was ideal, close to family and friends; we wouldn’t go through this alone. Westchester made arrangements with Boulder Hospice and we were greeted the morning of our arrival by Betsy, our hospice nurse. She made all the arrangements for Elllie’s oxygen tanks and concentrator, as well as put people in place to help us before we even arrived. We rented a beautiful, sunny home in the forest above the town reservoir in Nederland. It was something out of a fairy tale, Hummingbirds flying in and out of our house, gardens all around us and I went into nurture mode. We had come to accept that there was nothing we could do except wait and see and just love this baby girl. I desperately wanted to enjoy the time I had left with Elllie and create memories for my family, but it was hard to get past the idea of her dying. Despite the lovely surroundings I found myself being uncomfortably depressed. Whether I liked it or not, Hospice came 4 times per week… they were my ‘drill sergeant’. They would come and give me a kick in the butt… a reason to get out of bed each day. Some days they would fold my laundry or do my dishes (much to my horror). They would give Ellie her check up and then play with her or give her a bath while I showered. I felt anxious about asking anyone for help, about people seeing me so vulnerable and about me so not being on top of my game. It was difficult for me to get through my day with any sense of purpose. I would call Curtis at work and just sob into the phone… Sometimes I wouldn’t say a word, but he knew it was me. I know how difficult that was for him, on top of having to leave us each morning and to go work, not knowing if she would be alive at the end of the day. I am so thankful to him… he gave me the gift of time with my daughter…There was nothing he could do to change what was happening, but that gift is priceless. I am thankful that Hospice gave us the support we needed to keep our family sane. My son was provided with an art therapist so that he could have someone to talk to, someone who was just about him. Curtis and I saw a hospice councilor each week so that we could work through our difficulties, plan for the unknown and simply communicate…. It was during this period that we became familiar with Mt Evans hospice. We made arrangements so that when we came to Evergreen to see the family, there was a plan in place if something happened. The angels that I occasionally wear around my neck remind me of how easy it was for me to have a glimpse of normalcy during that period. Ellie was given a life expectancy of 1-2 weeks… somewhere around 15 months it became clear that Ellie could live indefinitely; there were no answers anywhere we looked. I was also seven months pregnant with my third child, Aidan and decided that we needed to make plans to keep her for as long as she was allowed to stay. I began to see things through Ellie’s eyes… tree’s, lakes, grass, hummingbirds, animals at the zoo, her adoring brother, how she smiled when her daddy came into a room, how she lit up when I kissed her, rain drops, cookies, love….. The following year, Ellie began to deteriorate although slowly. She began to suffer from tachycardia; it went from once a month to 3-5 times per day. Her heart would beat so fast, she would pant and cry, barely able to catch her breath… Her cries were almost silent! She began to have seizures stemming from other unknown conditions that she was living with. Each week a new doctor visit would uncover more issues. It felt wrong to watch her suffer and not be able to do anything for her. With hospice at our side, we made the decision to move to Baltimore so that Ellie could be seen by doctors at Johns Hopkins. With the encouragement of two of the world’s most famous doctors (Dr. Ben Carson, Neurosurgeon and Dr. Duke Cameron, Cardiology) we entered the world of no return. A do or die scenario in real life. We knew by staying on Hospice Ellie would eventually die but would suffer greatly along the way. As parents, it became unbearable to watch. The unknown was that through surgery perhaps she could remain with us a little longer than originally thought, or maybe get better. The decision was very difficult for us and was not made readily or easily. We met with 3 separate ethics boards to help us make the decision to put Ellie through a heart surgery that would repair her heart. The surgery lasted over 12 hours and was successful in that her heart was repaired. The months that followed were not so great. I essentially lived in the NICU, going home to sleep a few hours each evening or to have dinner with boys. She was placed on life support twice, was on a ventilator to assist her breathing, she received a pacemaker, was on dialysis, and in the end her liver failed causing us to have to make the decision to remove all support. On the last evening we had with her, Curtis helped me crawl into her hospital bed, navigating though all the tubes and wires so that I could hold her in my arms one last time. I laid there thinking about all the happy times we had together, about our fairytale house in Nederland, her lovely smile, her laughter, the way she looked at me and the way she smelled and about the love that Ellie was given and the unconditional love that she gave back. When you looked into Ellie’s eyes you knew that she was ok. There was not going to be anymore looking into her eyes. I remember wishing that we were still in that place surrounded by Columbines and Hummingbirds…. I wished that Baltimore never existed. But I never wished Ellie away, I wouldn’t change that. I wished things had been different but that different always included Ellie. I am thankful for the time we were given with her, for the memories, the love, the transformation of our characters. There are no words to express the hurt, sadness or the brokenness that we feel as a family, simply no words. There is emotion there that can’t be expressed. However, without the care and support of our hospice family, I wouldn’t be the same person I am today.
