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