Our Circle Grows

Merriam-Webster defines the word “tribe” as a social division in a traditional society consisting of families or communities linked by social, economic, religious, or blood ties, with a common culture and dialect, typically having a recognized leader. While I may not be a well-recognized literary powerhouse, I would like to tweak that definition just a bit based on my experience over the past several weeks. I believe the original definition focuses too much on creating divisions and not enough on the unity of the whole.

Originally when I wrote about our “Miller tribe” I was operating under the guise that my little family lived and functioned as an autonomous force. Like early tribal groups that lived in hostile, unforgiving environments, when faced with danger or a challenge the Millers would draw in close to one another huddled in a circle of solidarity, ready to take on the enemy as one. Over the past weeks the Miller tribe has met a foe that we cannot beat alone; one that has attacked our youngest, most vulnerable, and most innocent member. But also during that time, we have seen our circle expand by multitudes.

Many people lovingly refer to my kids as “stair steps”, with Hazel being the shortest stair on our tiny set of steps. With her shock of red hair, deep blue eyes, and fair complexion, she portrays a stark contrast to my other three blonde, dark complected offspring. I think every parent would say their kids are the best mix of their and their spouse’s personality traits, but I have yet to see a more spirited combination than what is found in the tiny package of dynamite that is Hazel Elizabeth Miller. Headstrong, decisive, yet compassionate, Hazel has always been unafraid and ready for any new adventure. I have yet to see her back down from a challenge, no matter great or small.

Ever since she was born, Hazel has been the glue that pulls our little family together. Her siblings may tease her now and then, but heaven help the poor soul that may say a cross word to Hazel on the playground. I have watched from afar as my three eldest descended like a pack of hungry wolves on anyone they believe had wronged their Hazel Basil.

That isn’t to say that Hazel can’t take care of herself too. Being the youngest of four (and a girl to boot) warrants a certain brand of toughness that can’t be taught, it’s just inherent. Her siblings (and a few nurses) can attest to the power and accuracy with which her adorable little legs can deliver a swift kick if the situation warrants, yet oddly enough in nearly all instances the person on the receiving end of her wrath would rather hug her than retaliate.

Hazel seems to have that effect on people. She loves so innocently that it is almost as if it is contagious, bringing out the best in nearly every person that she meets. Over the past two weeks I have witnessed the “Hazel Effect” on a grand scale. Within 24 hours of Hazel’s diagnosis my family witnessed a tremendous outpouring of love on every front imaginable. We had friends and family sitting with us in the hospital, calling us, setting up financial support, prayer chains, Amazon lists, non-profits, the list goes on and on. The response was so overwhelming and so immediate, we almost couldn’t process what was happening. In addition to our friends and family, we had complete strangers contacting us from local and national organizations offering to help, the hospital put us in touch with financial counselors, psychologists, and social workers. Churches sent cards, set up meals, offered to mow our yard while we were gone.

Watching this unfold is a humbling experience; to know that so many people on this earth care what happens to my daughter rocks me to my soul. Years ago while I was a freelance writer I had written a short piece on the concept of relationship webs. Essentially, the relationships we develop during this lifetime do not exist in straight lines, but instead exist as web that is weaved throughout time, the strength of which varies depending on a variety of factors including the experiences shared, time spent together, and spatial proximity to one another. In my writing I had argued that the strength of a relationship did not have to necessarily be built over time, but instead could be gauged on the impact that each participant had on the other.

Hazel puts that theory to the test as she has literally thousands of people across the country praying for her and providing support. Many of these people have likely not even met Hazel face to face, but they know someone who has. The impact that Hazel has had on the people she has met is what connects us all as a whole. It is what drives us, gives us hope, and allows us to face each day.

Over the course of the last two weeks, my perspective has changed a great deal. My point of view used to be, “If any of my kids had a life threatening disease, it would crush me. I don’t know how I would go on.” My experience with childhood cancer is minimal thus far but has taught me many things already, the least of which is not the indomitable will of the human spirit to charge forward even in the toughest of times.

As we charge forward, we are so thankful to have you all with us along the way. This journey will not be easy; we know it will be wrought with heartache, uncertainty, and fear. But we also know we are not alone, in faith nor in number. Our tribe has grown and our circle is fortified with warriors of all types. We are ready for the fight. The #MillerTribe thrives.

“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” – 2 Corinthians 12:9-10

The Tribe

Eight months ago I started a new job. During the onboarding process with our HR Administrator I was given a questionnaire of some basic information about me and my background that could then be circulated to the other employees in the company to get to know me a bit better. One of the questions was “What is your greatest accomplishment to date?”

I know that for the most part this was a career-based question designed to help others understand my personality and work demeanor, however when I thought for a moment about the true mechanics of the question, I realized my greatest accomplishment was not work related at all. I define accomplishment as a success that changes your life and the life of others in some meaningful, positive way. I have never measured my success by my bank account, the size of my home, or what car I drive because I know that these things are material and often in our society do not define the true measures of a man’s integrity and character.

I am reminded of my greatest accomplishment every day because it still surrounds and consumes me. I answered the questionnaire with two simple words, “My family.” Later on when I saw my HR Administrator she told me that was the best answer to that question she had ever seen. My reply was simple, a shrug of the shoulders and a simple “They are why I do what I do, every day.”

I have a loving wife and four wonderful kids that drive my actions every single second of every day. Everything I do is to make life a little better for the tight little family unit that my wife and I have created.

People that know us call us a tribe and I would like to think that this is not solely related to our somewhat astounding numbers. Rather I hope it is based on our attitude toward one another. We live and breathe one another. My house might as well be a single room, because we rarely are ever apart while we are there. We eat together, sleep together, and live life…together. My kids share a connection with my wife and I and one another that is so deep, so spiritual in nature that the word “love” does not describe it sufficiently. Our souls are connected as one, a conglomerate of caring, compassion, and unyielding faith in the whole.

It is love at its most powerful and it is the truest expression of agape that I am sure to ever witness on this earth. Paolo Coelho said, “Agape is total love, the love that devours those that experience it. Whoever knows and experiences Agape sees that nothing else in this world is of any importance, only loving.” I believe that God gave me the family I have so that I could learn to understand his love, agape love, a little better. One time when I was younger I remember my dad telling me that he would do anything for me, give up life and limb so that I could live a better life, no matter what it meant for him. Until I was a husband and a father, I never truly understood what he meant.

My family is in the struggle of its life right now. One of ours is hurting and we can’t make it stop on our own. Elizabeth and I have cried until we can’t cry anymore for Hazel, but the pain starts anew when we see our other children grapple with the realities of Hazel’s illness. Each of our three eldest deal with it in their own way, but there is no doubt that their hearts hurt for her. After four days of successful chemo treatments, we brought the other three kids to Columbus to be with us as a way to help our family begin the healing process together. Much of our time has been spent roaming the halls as a gaggle of six, following around this tiny red headed person wearing a mask and pulling along an IV pump. We visit the toy room and play for hours, watch movies, and simply just “be” together. Our oldest says it’s not the same and he is right, it’s not, but it’s what we’ve got right now. We all know Hazel is the same fireball we had before, but she seems so much more fragile as she toddles around in her miniature hospital gown. Thankfully, her personality remains intact as she says please and thank you to the nurses when we get the play room key, sings along to her favorite movies, and sticks her tongue out at me just to get a reaction.

My wife and I used to tease with friends, saying “Lifing is hard today,” but we had no clue how truly tough life can be at times. Struggles prior to Hazel’s diagnosis seem pretty insignificant now and each day brings a new set of difficulties that we did not anticipate the day before. But we are figuring it out. Our family is slowly putting the pieces together and creating our new normal. We are strongest when we are together, living and loving as one. The Miller Tribe moves on and remains strong.

“Love bears all things, believes all things, hopes all things, endures all things. Love never ends. - 1 Corinthians 13:7-8

Introduction

I have had a difficult time deciding what to write here. I am familiar with writers’ block, but this is something different. It is not a problem of not having anything to write, but instead a struggle to sift through all of the things that I want to write. Instead of informational, I am choosing to use this avenue therapeutically. As a writer I use prose to express the emotions and thoughts that on a typical basis cannot be loosed in everyday life. The written word allows me to reflect with 20/20 vision on the events I have witnessed and portray in relative clarity how I have chosen to process those events on a physical, emotional, and spiritual level.

The best writing I have ever read has always been charged with emotion, filled with passion, and driven by life challenges. The ramblings on the following pages are raw and unedited; not meant to be pretty, grammatically correct, or literary works of art. But they are my life, our life, and our journey with Hazel.

Easter Weekend, 2017 - Diagnosis

I have always seen life as a journey; an adventure if you will. The paths we take during our time on this earth are fluid and we often go through “seasons” of life that vary in difficulty on a variety of levels. The complexity of the interaction of those levels is often what leads to stress and how we manage that stress is manifested in a number of different ways.

The seasons of life are definitely not the same for each person, couple or family and often the season will be characterized not only by time, but also by the type of difficulty or triumph that the person or person(s) were going through at the time. Some seasons are long and some short, some are defined by spiritual troubles, relationships issues, financial struggles, or emotional achievements. The transition from one season to the next can often be so slow that you miss it until years later when you reflect back over your life. But every once in awhile there is a transition that is so abrupt and so devastating that you are acutely aware that a new season is starting.

On Easter weekend of 2017, I helplessly watched as a new season started not only in my life and my family’s life, but also the life of my beautiful little redheaded fireball, Hazel Elizabeth. It started when my wife, Elizabeth, took Hazel to our pediatrician for a follow up visit after she had finished a 10-day round of antibiotics for a case of strep throat. Nothing seemed abnormal at first and the check up went fine, but Elizabeth was still concerned that Hazel looked pale and our doctor was willing to err on the side of caution so he ordered bloodwork. Later on that day the doctor called Elizabeth and told her that Hazel was not in immediate danger, but that she needed to go straight to Nationwide Children’s Hospital (NCH) in Columbus and have more testing done.

My job takes me to industrial plants all across the country and is pretty much 100% travel for up to six weeks at a time. My team had recently finished a job early in Iowa and we were driving home with our company truck and tool trailer when I received Elizabeth’s call saying she was headed to the ER at NCH and could I meet her. Luckily, we were just passing through Columbus at the time of her call, so I was able to meet her on the road and stand by her through the terrifying events of the next few days.

Over the course of three days, Hazel was run through a battery of tests to help determine what was wrong with her. The initial blood tests showed she had slightly elevated white blood cell counts, low hemoglobin, and low platelet counts. While these results could present from a variety of different causes, the scariest one of course was cancer. By the time I arrived at the hospital, I had already read enough of the available research to know to be worried that leukemia could be a possible, if not likely diagnosis. As each test came back negative, but Hazel continued to remain pale and act lethargic, I dreaded what I felt deep in my heart was coming. I prayed so very hard that night for one thing and literally one thing only: please do not let me baby girl have Leukemia. I didn’t say cancer, I was specific, I said “Lord, please don’t let Hazel have Leukemia.” Over and over again I repeated this simple prayer and hoped against all odds that we would hear that she had a treatable infection, bacteria, or even a virus.

Alas, that was not destined to be the case. Over time we began talking to more and more oncology doctors instead of general attending doctors, they were slowly breaking us into the fact that it looked like Hazel was battling Leukemia. During this initial phase we met an oncology fellow that really connected with Elizabeth and I, and while very straightforward, she always remained positive with us and assured us that they had the capabilities to help Hazel battle this disease. She remains on our team today and we are so very thankful for her and her compassionate bedside manner that first helped us grapple with the concept of cancer in our tiny daughter.

We heard a lot of people say “The worst part is the not knowing.” when we were waiting for a diagnosis. For some that may be true, but for us, I don’t believe that was the case at all. As long as we didn’t know, we had hope. Hope for a different diagnosis beyond the word “cancer”. Hope for a relatively short hospital stay, some medicine, and then a return to normal life. Hope for something, anything else beyond a long road of chemotherapy, steroids, and roller coaster emotions for the next 2-3 years.

On Saturday, April 15^th 2017 that hope was finally destroyed for good. Our doctors filed into Hazel’s hospital room as she lay sleeping next to her momma. The oncology team slowly, compassionately explained that the lab results finally showed that Hazel was indeed suffering from Leukemia. More specifically, she has Precursor-B Acute Lymphoblastic Leukemia or ALL for short. Our doctors quietly held us as we cried, asked questions, and learned what life was going to look like moving forward.

This was without a doubt the worst day of my entire life. Some people say that you just “go numb” when you hear news like this but I didn’t. I felt everything. The range of emotions that hit me all at once is indescribable. I felt such an immense and crushing sadness, the likes of which I have never felt in any other situation in my life. The hurt ran deeper than simple emotion, deeper than my brain could fathom, and deeper than my heart could truly bear. This type of pain can only be described as being felt in my soul. The very fabric of being that makes up my life and total human consciousness, that which connects me to this world and the thereafter, aches.

This deep-seated sadness is not based in fear, its actually based in knowledge. Knowledge of the fight Hazel has ahead of her. Knowledge that I cannot take away any of her suffering. Knowledge that the new normal for my family includes the word “cancer” and involves hospital visits, precautions, medications, and scary side effects. I cry all the time. I wake up and cry. I cry telling people about her diagnosis. I cry watching my other kids on the playground. I cry when I’m alone and when I’m surrounded by people.

I hurt so much for Hazel, for my wife, my kids, my family, and yes for myself. Each day on this path is a hard journey and not one that I want to be on, but one that I accept and I own. My faith remains unwavering, I am sad but not depressed, I am not afraid. I have resolve and I will do anything that needs done to make sure that someday I will walk Hazel down the aisle and give her hand to some extremely lucky young man. Her red hair will be spilling out from underneath a white veil and she will be taking the first steps to starting and leading her own family. As she does, I hope that the path I am leading our family on during this trying time remains a poignant season of her life characterized by faith, support, strength, and love. So so very much love. 

Mark 14:36
"Abba, Father," he cried out, "everything is possible for you. Please take this cup of suffering away from me. Yet I want your will to be done, not mine."