There is a Virus Out There

“Dad, you can’t be outside! There is a virus out there,” Hazel, age 5, ushering me inside upon my return from work on Friday.

The world has always been a bizarre place, but never more so than now. My drive to work takes me past countless closed businesses – dark windows and empty parking lots telling the tale of the screeching halt our country has come to in the grips of COVID-19 hysteria. I spend my day in a bubble of feigned normal activity which is continually punctured by meetings to deal with the latest information on the Coronavirus pandemic. My kids have been forced into homeschool, their teachers learning on the fly how to push out lessons via Google Classroom and other online communication tools. My extended family is splintered, interacting via FaceTime and through closed windows of vehicles idling on empty streets. Church is canceled, dance is canceled, soccer is canceled. The world we know is suspended in time, watching with wide eyes as each new social limiting edict is delivered from our political leaders to try to curb the spread of an enemy we cannot see, but know is among us.

The scale of this current pandemic is something most of the developed world has never seen before and certainly something most of my generation has never witnessed, and yet the measures we are taking…feel so familiar. My family has been quarantined before, a lot actually. We have spent weeks without hugging our loved ones, washed our hands until they were raw, sanitized every surface in our house daily. We didn’t panic when the stores sold out of hand sanitizer because we still have unopened quarts of the stuff. We have foregone birthday parties, avoided stores, and skipped church (even though we desperately wanted to be there). We didn’t need to buy Lysol wipes because we had a case left in the basement.

As a parent of child that had a blood cancer, I will never forget (or recover) from the experience of self-quarantining in a world that was operating at full capacity. We looked out the door and saw nothing but germs and sickness, seemingly benign issues for most of society that could have spelled death for our beautiful little redhead. We lived in constant fear during that time, stopping loved ones at the door, scrutinized our food preparation, minimized our contact with anyone and everyone. We did what we could to control the things that we could…and yet Hazel still had sickness. She still had fevers and we still were forced into weeks-long hospital stays that likely saved her life.

I am fortunate to be able to worry much less about Hazel now than two years ago. Her immune system has nearly fully recovered and she can now fight off sickness on her own, although COVID-19 still presents considerable risk. I cannot even imagine having a child going through chemotherapy during this time. Cancer parents already live at a state of heightened concern, feeding off of the constant stream of adrenaline released as you do everything in your power to keep your child alive. I imagine it is similar to how first responders continue performing their jobs in states of emergency or how soldiers continue fighting in times of war despite being totally physically and emotionally depleted. I rode that “high” for months at a time, carrying on through all the peaks and valleys of Hazel’s treatment. Elizabeth and I balanced work, finances, school, the needs of our other three children, and Hazel’s battle for as long as we could until one of us would eventually crack. Our bodies and minds would perform for as long as they could and then one day, we would just collapse, broken, depleted, worn, done.

God was glorious enough during those times to ensure that we didn’t both go down at once, allowing our partner the strength to continue handling life, while the other spouse was crushed under our personal crisis. But then, slowly, we got through it, picked up the pieces, and continued on.

It has been a long time since I felt that type of pressure, but this week, my adrenaline high fueled by anxiety has returned. By virtue of position and circumstance, my level of concern now no longer lies within the four walls of my own home. I have 30+ team members currently spread across the United States that depend on me to keep projects moving, provide them resources, and ultimately maintain their safety. I have worked next to every one of these individuals over the years. I know their stories, have met their families, and have shared in many of their own personal victories. My capabilities are stretched as I try to keep our business running smoothly, maintain the safety of our team, and balance their personal needs during this time of pandemonium. I also have 350+ church members that look to the decisions of several of the leadership boards I sit on to help keep our members safe, yet still be the hands and feet of Christ during this time. And of course, I have five immediate family members that are watching how I handle myself in a world fraught with uncertainty. 

Today’s global crisis is scary. The health danger of the Coronavirus pandemic aside, the state of our society as a whole is concerning. Thousands are without a job for an indefinite amount of time, stores are struggling to maintain supplies, and politicians and health advisors are doing their best to keep the public informed – and yet our country marches on, trying to stabilize the reeling economy and keep the most vulnerable of our population safe.

Much has been written on how the measures put in place by our government are not for the masses, but for the individuals that cannot fight this virus. Every time I sanitize my hands, wipe a door handle, or turn on an air purifier, I remember that, because Hazel was one of those individuals. I don’t care what your stance is on vaccines, healthcare interventions, or political affiliations, the actions we take today on a personal level determine life or death for those who have nothing to bring to this fight tomorrow. Being immunosuppressed is horrifying in a world without COVID-19, but it has become even more desperate in the current landscape.

I have walked a similar path to this already in my life. Crisis exists, but my reaction to it is the measure of the man I have become. I have prayed my entire life for wisdom, a focused desire to ensure I can lead when needed, and it is needed now more than ever. I strive to make my actions contemplative, using data to inform my decisions, leading with my heart, and allowing faith to act as my guide. My God is real, he is bigger than the problems I face, and he can handle this. My job is to be His servant, and act out His will. The public mantra has become "We are all in this together" to signify we are not alone, but I would add to that "...and He is here." 

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” – Isaiah 41:10

Ohana

A slick bead of sweat ran down the crease in my forehead, teetering on the edge of my brow, then careened down into the corner of my right eye. My vision blurred and it stung. I blinked and rubbed my eyelid with a finger. I paused and looked ahead of me. All I could see was tiny pink Minnie Mouse tennis shoes and a flowy unicorn dress, scrambling over one of the rust-colored boulders that blocked our path upward. “Come on Daaaad,” Hazel bellowed. I grinned, put my head down and kept climbing. We were approximately half a mile up the side of a mountain in Hawaii, following a trail described on the webpage I found as “somewhat technical”. As I searched for the square U.S. Army “pill box” along the jagged summit line that seemed to be miles above us, I wondered what exactly a “technical” trail would consist of on the island of Oahu. We had already traversed scree fields, sections of trail that sidled along the mountainside with vertical walls to our left and sheer drop-offs to our right, and were now on the upper exposed slopes of the mountain where the sun baked down on us from what only seemed a few feet above our heads. And yet, not a single person on the Miller Expedition was complaining. In fact, to the contrary – with each step higher, my crew seemed to get happier.

I have taken my time in posting about our recent trip to Hawaii for very specific reasons. I am tasked with capturing an experience that is incapable of being described. My words, my descriptions, can in no way do justice to the experiences that my family was fortunate to witness in such a short amount of time. My family saw absolute magic, the likes of which we may never see again. We saw a land that was both groomed and perfect, yet still raging, wild, free and stunningly beautiful at the same time. We met people from all over the world, my kids heard no less than 15 languages in seven days. We saw the Pacific Ocean, looked into a volcano from 15,000 feet, soared close to the edge of space, and crossed five time zones. We did all of this as a complete family unit, all my beautiful, intelligent, healthy children together, eyes wide, mouths open, and hearts free. There were times in the past two years that I was not sure we would ever be that way again.

Hazel’s Make-a-Wish dream was simple: go to the beach and see Minnie Mouse – in that order and with that same level of importance. She loves Minnie, but she loves the beach and the ocean more. The ocean calls to her, and I completely understand because it calls to my whole family. The ocean speaks softly to us as it laps gently at the sandy shore and it screams a siren call as frenzied waves crash against the rocks guarding the harbor. The early morning gulls and calm dark green surface soothes us in the morning and the deep, fiery reds and orange of sunsets on the water are painted with God’s own hand. We feel the strength of the undercurrent that pulls at our legs just below the surface of the water, understand the complexity of God’s design as we swim atop reefs full of life, and are calmed by the salty breezes that whisper in our ears and stir the palm branches.

The Miller Clan has been fortunate enough on many occasions to stand on the Eastern shores of the mainland and watch the sun rise from the depths of the Atlantic Ocean. Now we have also stood on the Western shores of Oahu and watched as that great ball of fire sunk deep into the gray and white of the broiling Pacific sea. The significance of that that parabolic journey with origin and destination entire worlds apart has not been lost on us.

Hawaii was nothing short of a spiritual experience for us. Surrounded constantly by a culture that treats the land as sacred and puts such importance on family that a word had to be created to describe it: Ohana. Popularized by the movie “Lilo & Stitch” and without a direct westernized translation, the word stems from ʻohā which is the root of the taro plant, the most important plant in Hawaiian culture. The Taro plan has sustained oceanic island cultures since the beginning of time. In times of good and bad, the Taro has been a food staple that literally perpetuated the existence of human life. Ohana loosely means the unbreakable, unshakeable bond of family, but with one truly epic twist – Hawaiians extend the meaning of family to basically include everyone: immediate family, cousins, friends, race, neighbors, strangers, people we may never meet. Oceanic culture sees us as all being interconnected and wholly dependent on one another for survival. Banded together, our differences no longer become fissures, but instead are the weld lines that draw us together. Ohana means cooperation and love. It is a warm embrace, a bright smile, a knowing head nod, or small acts of kindness, all of which add up to an extraordinary feeling of belonging. In the famous words of Lilo, “Ohana means no one gets left behind.”

No other place on earth would have been more appropriate for my family to have visited following our battle with cancer than Hawaii, and no higher a pinnacle could have been claimed than Pu’u o Hulu – which was the name of the trail we were on. We rounded the last major switchback in the skinny dirt trail and as Hazel continued to plod continually upward, I spied our destination perched high atop the summit cairn. A small concrete building approximately eight feet on each side and seven feet tall with a flat roof exploded out of the ridgeline. Long, open windows ran along three sides of the structure. These small buildings are known as “Pill Boxes” and there are hundreds spread across Hawaii. They used to house WWII soldiers on the lookout for approaching ships in the sprawling sea surrounding the islands. Today, visitors count it as a badge of honor to complete a “pill box hike”, following one of the many barely maintained trails that lead to these small encampments so they can snap a picture or add to a geocache.

The pill box we were headed to that day had a much different meaning than most you will find on the island. The pink pill box on Pu’u o Hulu is fluorescent pink and adorned with a large three foot by four-foot ribbon painted on the side facing the ocean. Once you enter the squat metal door situated on the backside of the pill box, you are surrounded by the names of warriors. All four walls of the pill box are covered in names and dates – memorials to cancer warriors of yesterday and today, those who have won their battles, and those who have lost and continued into the arms of God. This is hallowed ground. A standing monument to the brave men, women, and children who have looked into the eyes of the devil himself – some from a hospital bed thousands of miles away and some from that very summit.

Tears streamed freely down my cheeks as we entered the cool confines of the pill box and looked around. Hazel and her siblings walked along each wall, small fingers trailing along the cold concrete, reading names and dates. We were all quiet for a moment…and then we looked out onto the ocean. Never have I witnessed such an incredible expanse of deep blue green water in my life. As far as I could see it looked like sparkling diamonds spread across a topaz blanket. It was breathtakingly beautiful – God’s fingerprint stamped on the world – and it stirred my soul. The names surrounding us in that pill box were our family now. They had been through the same ugliness we had, and their lives were just as destroyed as ours. Ohana, no one is left behind.  

We stood together on that summit, a family beaten and broken, but made whole because we were together. Our cancer journey has stolen much from us, but it has given us so much as well. This experience was lifechanging, home wrecking, and faith destroying – and now we are learning how to walk together again. We will heal, life will regain normalcy, but we will never forget from which we came or where we are headed.

“My child never forget the things I have taught you. Store my commands in your heart…Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all you do, and he will show you which path to take.” – Proverbs 3:1, 5-6

Calming the Child

“Dad, do you ever regret having us kids?”

My eleven-year-old son posed this question recently, delivered in his typical matter-of-fact deadpan style as I slumped heavily into our couch to try to recover from a particularly chaotic – and expensive – Sunday afternoon. My family had all recently returned from attending church, going to two separate birthday parties, grocery shopping for the week, buying new school shoes for the older three, and signing the youngest up for soccer. Finally home, we now had to get everyone bathed and in bed so we could begin our week anew tomorrow. The couch was my refuge as I searched for a few moments of solace to gather my thoughts and regain the strength to continue doing the things that all parents must do just to have a functioning household each day.

I glanced over at Paul and realized he was staring at me wide-eyed, waiting for whatever nugget of wisdom I was about to impart on him. Paul doesn’t ask questions like this without fully contemplating them himself first, and I could tell by the look on his face that he was afraid of what my answer may be. We have always been very open with our kids, so before I gave my reply, I took a deep breath, dropped my eyes to the floor, and contemplated the last three years of our life.

My children have experienced horrendous, gut-wrenching, life-altering things over the past three years. Upon Hazel’s initial diagnosis, they watched as their parents were broken – our hearts torn apart by the realization that our youngest, most vulnerable child was about to begin a fight for her life; one that we didn’t know if she would win or lose. My kids then watched as we delivered the news to grandparents, aunts, uncles, and cousins – each time witnessing new shockwaves of grief, pain, and sadness ravage those they hold most revered in this world. For the three years following that diagnosis, I had one child actively battling cancer – a process that demanded absolutely everything of Elizabeth and I – but I also had three children explaining to their friends and classmates that their baby sister had poisonous blood and may not live to see her third birthday.  

I have often written about the scars that cancer has left on my family. The worst of these are not physical, but mental and spiritual. Our souls are etched. Our psyches shattered. The courses of my children’s lives have been changed forever. They have sacrificed more than any of us can even know. They have been scared, they have been sad, they have been alone, they have mourned.

My children have grown up much too fast. They have attended funerals of cancer warriors both younger and older than they are. They have spent hours, days, and weeks in the hospital. They have stood outside Hazel’s door with masks and hospital gowns on, blowing her kisses because it was too dangerous for them to touch her, lest she get sick. My kids have had chemo stored next to the milk they put on their cereal in the morning, they have foregone vacations so we could stay closer to Hazel’s doctors. My children have missed out on parts of their childhood because of a minor mutation on one of Hazel’s alleles that she has had since birth.

Do I wish I could have saved my family this pain? Do I wish I could have avoided the heartache of the past three years? Do I wonder what life would have looked like without cancer darkening my door? Yes, absolutely. I would do anything on earth to be able to walk this all back and change our path.

Do I regret having my kids and sharing this life with them? Not for a second.

“Paul, let me explain something to you, and I hope you understand,” I started. “You are my greatest accomplishment. You kids and this family is what I have worked my entire life for, and I would never give that up. I know much of the time I look tired or I am grumpy, and maybe sometimes I complain. But buddy, you have to understand how much you mean to me. I may regret being a better person or building a better life for you, but you and your siblings complete me. You make all of this worth it and I would never, EVER, regret that.”

Paul’s gaze was at first quizzical and then softened as he seemed to stare at something far off behind my head. “Life is hard sometimes, huh Dad. But I guess it seems better cuz we are together.”

September is Childhood Cancer Awareness month, a time designated to help raise research awareness and funding for all types of pediatric cancers, as well as show support for those young warriors who are actively fighting, have fought, or have lost a fight to cancer. One month a year – 30 short days – during which the eyes of the world are on our children and the plight with which they deal. Many stats are thrown around during this month on social media. Profile pictures are adorned with yellow ribbons, bumper stickers show up on cars, charity walks are organized, and viral pledges are made. All of this activity…for one month out of twelve. I know countless families for which September is nothing special, nothing more than another month filled with days, hours, minutes, and seconds of pain. More clinic visits, more test results, more consultations, and more decisions. To cancer families, September can mean more tears, more tragedy, and more sadness. My family has been there, we have walked this path, and we are one with these families.  

How fitting that September is also Hazel’s birth month. Tomorrow we are poised to celebrate her fifth birthday and by the grace of God, she will do that cancer-free. Some would say Hazel is lucky – her cancer was treatable, highly researched, and she responded well. She also had massive support from her family, friends, church, and community. Her doctors were some of the best in the world and her chemo was readily available. But I don’t believe luck had much to do with it.

I follow a God who is bigger than cancer, whose power created the highest peaks, whose hand stills the raging ocean, and whose heart loves the greatest sinner. I believe in a God of compassion, of unending wisdom, and of deliberate action. I know that my God never does anything without purpose and He has stood with me in the darkest of times in my life. He has taught my family to stand against the toughest of storms, shoulder to shoulder, fighting the same battle, as one. We have learned that sometimes God calms the storm, but other times He lets the storm rage on and calms His child.

“You faithfully answer our prayers with awesome deeds, O God our savior. You are the hope of everyone on earth, even those who sail on distant seas. You formed the mountains by your power and armed yourself with mighty strength. You quieted the raging oceans with their pounding waves and silenced the shouting of the nations…From where the sun rises to where it sets, you inspire shouts of joy.” - Psalm 65:5-6, 8

The Sound of Life

Did you know that if you listen carefully, the naked human ear can actually hear the sound of blood pumping through another person’s heart?

Ka-thump, thump, swishhh. Ka-thump, thump, swishhh. Ka-thump, thump, swishhh. The sound was calming, like the waves washing gently ashore on a secluded beach or the quiet rustling of willow leaves as they moved in the wind.

I was lying sprawled on our bed with my ear pressed against Hazel’s tiny bare chest, my earlobe making a soundproof seal against her impossibly soft, white skin. Waves of tiny cells, the same kinds of which only months earlier threatened to snuff out her life, coursed through her veins. I looked down the length of her body, watching the rhythmic rise and fall of her belly as she breathed in long and deep, sleeping the exhaustive sleep of summer. It’s a sleep that was brought on by campfires, firefly chasing, pool playing, parties, ice cream, bike riding, s’mores, and laughter. So much laughter.

It was still early, but the sun was beginning to shine through our bedroom window. As I looked along the length of Hazel’s legs, bright orange rays were poking through the spaces between her small toes, lighting up her feet like sunbursts. I took a deep breath and could smell her – she smelled so good. She smelled like LIFE. I picked up hints of soap and lavender from her bath, sunscreen and water from the pool, chocolate from the small smudge of dried syrup next to her lip, and a light wafting of the grass and leaves she had run through the night before.

She wriggled a bit under the weight of my head and softly giggled in her sleep, dreaming the contented dreams of a child, a far cry from the nightmares of the past couple years. I smiled as I quietly lifted myself off of the bed and snuck to the door. I turned one last time to stare back at the perfect frame of my daughter, buried in the sea of our thick comforter and surrounded by piles of pillows. It looked like she was sleeping on a cloud, and in her dream I am sure she was – surrounded by siblings, cousins, friends, and family as she floated along in what must now seem like a surreal happiness.

There was a time when I was not sure I would ever have mornings like that one again. A darkness of such stifling proportion had descended on our house that my family could not look beyond the next hours let alone to the following week, month, or year. But at the sharp, single clang of a golden bell in the middle of The Magic Forest, that all changed...symbolically anyway. Hazel rang her bell two weeks ago and our life has been a whirlwind of goodness since then.

We have celebrated, traveled, camped, loved, laughed, and cried. It has been a perfect storm of emotions as we finally took the time to reflect back on what we have all walked through together.  I am sorry to say that in the nearly three years this journey has taken, my children have all grown up – my sons are turning into young men, my middle daughter is eight going on 16, and Hazel is no longer that innocent baby that bravely walked through the sliding doors of the NCH ER in April of 2017. We are probably all worse for the wear – in fact I know we are – but we continue to heal, slowly, quietly, and in our own ways.

Hazel acts like she is making up for lost time. She works so hard at enjoying life from the minute her eyes open in the morning until she finally collapses in an exhausted heap at night. She constantly wants to do something – swim, play, camp, sleepover, eat, shop. You name it, she is in. She doesn’t nap and never slows down, as if she realizes this is her time now. It is the time to make the most of what she has. Her cheeks are sun-kissed, freckles exploding out in every direction from her cute, button-nose. Her once pasty-white skin is now a deep-set tan that sets off her sparkling blue eyes like tiny mountain lakes. She smiles incessantly, scrunching her tiny nose and squinting so hard that her eyes disappear. Her cacophonous laugh can be heard throughout the house all day long, typically in unison with her brothers’ and sister’s high-pitched squeals of glee.

Make no mistake, I have seen true evil. I have felt the dark waters of the lake of despair lapping at my feet day in and day out for nearly three years. I have witnessed things done to my child that will forever be etched in my memory – every poke, prod, and incision playing over and over in painstaking detail through my mind’s eye. I have done things that a father should never do to his child. I have held her as she screamed for mercy. I have looked into her terrified eyes and lied by telling her it was all going to be alright. I have inserted needles into her arm with my own hand, betraying her trust and threatening a relationship that will take the rest of my life to repair. 

My perception of what a good father is has been destroyed during this process. I don’t even know what “good” means anymore, because when we were in the midst of it, there was no choice between good and evil. There was only one choice; do this, or lose her. I chose her every time and if I had to, would do it all over again.

Our walk through this life is short and only allows so many opportunities to make a mark on a world that will continue spinning long after we are gone. Extreme heartache can be the refining fire that focuses our energy into the laser beam of intensity needed to affect change. I would never have wished this experience on our family, but it has made me better. I am a better man, better husband, better friend, and a better father because of it. I am more empathetic, more compassionate, and more understanding because of what I have seen over the past three years. I have witnessed God in people, felt a kinship with complete strangers, and watched the splendor of the human race come into crisp focus.

Cancer is ugly, it is hard, and its effects never leave your life completely. I wish cancer didn’t exist and that all those that are suffering in obscurity – heroes disguised as mere mortals – could experience the elation that Hazel has felt every day since she rang her bell. Hazel’s life is different than it used to be, but is a direct manifestation of God’s plan for her on earth, and that is a beautiful thing.

Ka-thump, thump, swishhh. Ka-thump, thump, swishhh. Ka-thump, thump, swishhh.

"May the God of hope fill you with all joy and peace in believing, so that you may abound in hope by the power of the Holy Spirit.” – Romans 15:13

Beginnings and Endings

How do you fit three years into a few paragraphs? I have so much I want to say. I feel like there is so much that needs said. And yet, my heart is still, my mind is empty. I am a shell. I am a limping, stumbling, and beaten soldier walking through a crater-strewn battlefield. The evidence of chaos surrounds me – decimation existing as the memories of the carnage that played out on this vast landscape that swallows me whole. I am dirty. I am broken. I am done.

I have emerged from this experience with cancer not feeling like a victorious warrior, but a scarred, lost soul. For so long I have chanted this war cry of faith, talked about the strength that got me from one day to the next, and pointed to the day that I would be able to say Hazel was cancer-free. This Friday is that day…and yet I remain silent. I should be rejoicing. I should be dancing with joy, shouting from the rooftops, singing His praises…something. Right?

I AM happy of course. I am joyous. But most of all, I am tired. I feel like these three years have been a race that started abruptly and had us careening at break neck speeds into corners that spelled certain doom if not navigated properly, only to finish on a prolonged, slow-moving straightaway. I have spent three years on edge, three years worrying constantly, three years praying without ceasing. I have spent three years being angry. Three years in fear. Three years in anticipation. Three years with my mind somewhere else. So much was stolen from me, from us, and from Hazel. I know I will never be the same, WE will never be the same. I can deal with that. But what is hard to deal with is the time we lost and the innocence that was destroyed.

My life has been a warzone. I have watched my daughter fall asleep in a drug-induced slumber over 30 times so her spine could be punctured and injected with liquid poison. I have held her down and stared deeply into her eyes as countless needles were inserted into her arms; felt her muscles tense in pain and fear while she screamed “You’re hurting me” at the nurses trying to save her life. I have brushed her wiry, chemo-damaged hair off of her pillow each morning for months in a feigned hope that she wouldn’t notice her hair was falling out…again. I have watched her struggle to walk as the side effects from the chemo stole her balance and weakened her muscles. I have held her and cried quietly as she struggled through fitful nights’ sleep, dreaming nightmares of what had already and was yet to come. I have celebrated holidays, birthdays, and anniversaries in the hospital. And I would do it all again if that is what it took to save her.

I know I am damaged, I never assumed we would emerge from this experience unscathed. Hazel has a small, pink line that juts across her chest, a remnant of the port used to deliver her life-saving chemo for the past three years. She wears it like a badge, telling the entire world “Something came for me, I fought it, and I won.” My scars are not physical, but their cuts are no less deep.  I will never forget what I have been through, but – like Hazel – I am healing.  It may take the rest of my lifetime, but I will emerge whole again.

This Friday begins that process. As Hazel rings her bell, I know angels – some on earth and all those in heaven – will be rejoicing right along with her.  Our God is no less God in the shadows and no less faithful when the night leads us astray. Therefore, I will praise Him as much in the valleys as I do from the tops of the highest mountains.

"A Song of Ascents.  I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth." – Psalm 121:1-2

Under Fire

Another in the Fire

Hillsong United

There’s a grace when the heart is under fire

Another way when the walls are closing in

And when I look at the space between

Where I used to be and this reckoning

I know I will never be alone

There was another in the fire

Standing next to me

There was another in the waters

Holding back the seas

And should I ever need reminding

Of how I’ve been set free

There is a cross that bears the burden

Where another died for me

Today we are headed to an Easter egg hunt in the park. Hazel is beyond excited, having discussed it numerous times over the past week with us, her siblings, grandparents, and basically anyone that would listen. She is excited for the “Easter party” at Grammy’s, gathering chocolate stashed in tiny plastic eggs, and showing off her new Easter dress and white high heels. What a difference two years can make.

Two years ago on this day I was sitting awake next to Hazel’s hospital bed, having spent every second of my night worrying, crying, panicking, and praying that I would not lose my daughter. Easter weekend of 2017 will forever be painstakingly etched into my memory as the worst time of my life. Instead of getting our family photo taken in pastel clothing on our front lawn surrounded by blooming flowers, we sat across the table from a group of doctors that told us our baby’s blood was trying to kill her. The events of that weekend set in motion a years-long battle that none of us knew whether we would win. The outcome was unknown and the anguish was unimaginable, and it crushed us.

Since that day I have spent countless days walking the halls of Nationwide Children’s Hospital, which Hazel lovingly knows as “Her Butterfly Hospital”. I have witnessed immeasurable kindness by staff and strangers alike, watched families’ worlds fall apart, and witnessed the elated joy of several bell ringings. I know hospitals are not typically a place where you feel comfortable, but to be honest NCH has become sort of a second home to me, or at least a place of comfort. I know every square inch of H12 and H11. I have walked miles down the barren white halls, lost in my own thoughts and prayer. The relationship we have with NCH and its staff is special. It is intimate, built on a closeness you can only gain through continued proximity and emotionally-charged life events. Our world was shattered inside those walls, but it has slowly been put back together there as well.

Much time has passed since my last post. I would love to say that I haven’t been posting because life has been so great that no words were needed, that we have just been having too much fun for me to sit down and write our story…but that isn’t true either. The past few months have been hard, and while maybe not as hard as our first year and a half, we have constantly been reminded that our life is not normal. We still live with cancer under our roof, we still have to be concerned with fevers, germs, blood counts, and chemo.

Over the past month alone we have spent four days in the hospital, preceded by an ER trip, followed by more delayed chemo and orders to keep Hazel isolated. We have watched as Hazel’s hair – which had been returning to its thick, curly luster – once again thinned and fell out. My heart was broken anew as I watched her brush her hair and look upon the brush with a forlorn, knowing stare. Hazel is older now and she understands so much more of what her world looks like. She regulates herself better than almost anyone I know. She washes her hands numerous times throughout the day, uses hand sanitizer constantly without prodding, throws away food if it even barely touches the table, and constantly asks us what “the doctors say her counts are”.

The toughest part of the past few months has been realizing that Hazel knows she has cancer. No longer just a babe, she now truly understands that she is sick. Her new realization has torn me down all over again, as if reliving those first few days in the hospital. I’ve told Hazel’s story thousands of times, to family, friends, colleagues, and complete strangers. One of the worst experiences of my life was explaining to my children that their baby sister may not live to see her third birthday. I have watched the emotions and realizations sweep over countless faces as I relate our experiences to them. But even though I may have wept through the telling of those stories, I have had to watch as my now four-year-old daughter – the one I see as perfect in every way, a miracle, a fighter, a healer, an angel – realize that something is wrong with her. Hazel’s normal is well beyond anything that anyone should have to endure, especially a child. The physical and emotional turmoil that is brought on by a fight with cancer is destructive, it is grueling, it is soul-crushing, and joy-stealing. She will never be the same and neither will we.

I can say unequivocally that my family suffers from PTSD. From the outside looking in, we may seem like any other family on our street; happy, busy, content. But our fridge contains three or four types of chemicals that are deadly. My desk is filled with reams of medical reports and blood test information chronicling the last two years of Hazel’s life. We always have “Go Bags” packed, ready for an ever-imminent trip to the hospital. Throughout the house you could find sterile gloves, chemo gowns, bandages, and numbing cream – all stashed waiting for our next required dosing. We are anything but normal and won’t be for a very long time. But we are healing. God is holding us and walking us through this process, and I trust His will.

We are in the midst of Holy Week, a time Christian’s celebrate the pinnacle of our faith. The death, burial, and resurrection of our savior Jesus Chris is the single event that sums up our belief and God’s divine grace in a single weekend. We need no more explanation than that to understand God’s love and will for us.

I believe it is so poignant that we celebrate Easter in the Spring, a time of rebirth and growth. A time when new flowers are blooming, and the earth seems to come back to life after a long, bitter winter that is often filled with hardship. The Spring brings promises of happiness and abundance, it delivers a reprieve from the struggles of winter and allows us the opportunity to build up what was torn down. Spring brings hope.

Our God is powerful. He has power over everything in this world and the next, including death. We follow a savior who is ever-present, all knowing, and completely faithful to us – a flawed race of man. We serve a God who will never walk away from us and never forsake our pain. The past two years have been very tough, but Easter reminds me that a reprieve is coming, on this earth or in the next realm when I am able to sit at the right hand of Christ. Because sometimes, the best things can come from the worst things, and more importantly, the worst things are never the last things.

Hazel’s journey is not over yet and my God promises great things are to come. I believe that promise, not with blind faith, but with a knowing faith that has been built in a fire where I was not alone.

Happy and Blessed Easter.

“He answered and said, “But I see four men unbound, walking in the midst of the fire, and they are not hurt; and the appearance of the fourth is like a son of the gods.” – Daniel 3:25

“When you pass through the waters, I will be with you; and when you go through the rivers, they will not overwhelm you. When you walk through the fire, you will not be scorched, and the flames will not set you ablaze.” – Isaiah 43:2

“Be strong and courageous; do not be afraid or terrified of them, for it is the LORD your God who goes with you; He will never leave you nor forsake you.” – Deuteronomy 31:6

A Year Like None Other

“Yet I will praise You

Yet I will sing of Your name

Here in the shadows

Here I will offer my praise

What's true in the light

Is still true in the dark

You're good and You're kind

And You care for this heart

Lord I believe

You weep with me”

- Weep with Me, Rend Collective

The short verse above is a snippet from a song that has been on repeat on my playlist ever since I heard it earlier this year. These words are powerful, an expression of love and admiration mixed with the desolation of grief that at some point we all feel in our walk with God. I have not posted for awhile, but that does not mean I have not been continuing to explore the emotional abyss that is dealing with childhood cancer. Never more poignant has this struggle been than the month of September as we not only observe Childhood Cancer Awareness month, but also prepare to celebrate Hazel’s birthday. My recent explorations and musings have been more internally focused, attempting to use my pen to make sense of life following April of 2017. I have studied loss and struggle throughout the Bible, learned the meaning and purpose of lament, and spent countless hours of reverent silence to allow God to rebuild that which was torn down over a year ago. I hope to someday reveal the results of this exploration in an actual published format, a memoir of our walk through this valley and an encouraging word for others as they trod the same path. For now, however, I will simply provide an update on Hazel’s progress thus far.

Hazel has had an amazing 2018. We were blessed to enter the Maintenance phase of her treatment earlier this year and she has been adapting amazingly well. Compared to last year’s bouts of sickness, hospital stays, and in-home quarantines, 2018 has been wholly different. Hazel’s cacophonous laughter can be heard throughout our home day in and day out. She runs, she jumps, she dances, and she sings constantly. In a matter of weeks she has fully potty trained herself, she does “homework” with the kids, and draws endless happy pictures, many of which are hung up in Daddy’s office. She is attending dance and tumbling classes this fall and starts soccer in October.

The Miller’s life has returned to a near normal state of affairs with a completely full schedule of activities and school. Unfortunately, Leukemia still exists in our house, never more evident than at night as Hazel uses her own tiny hands to push the liquid chemo out of a syringe and into her mouth or on clinic days when we all once again travel to Columbus. By all accounts Hazel is doing amazingly well, which means most days are filled more with rejoicing than with remorse.

Our year is much different than it was last year, but also much different than many others in our “community” of cancer friends. We have witnessed loss over the past year that has destroyed families, watched as lives were lost and hearts broken. We have done our best to comfort others, weeping with them as battles were lost, mourning the time foregone by an ugly, unrelenting disease. We are thankful for Hazel’s success, but saddened by the pain others must endure.

Hazel turns 4 this coming week, and though our life looks much different now than it did a year ago, we thank God each additional day we get to spend with her. I don’t know what our future holds, and I don’t need to, because our here and now is pretty great.

Thank you all for your kindness and support through this most difficult time in our life. God has shown us his love through loving people around the world and we praise him for it.

“Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.”                                                        - Isaiah 41:10