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
