I breathed deeply and allowed myself to bask in the glorious
beauty of my surroundings, my momentary escape. As I closed my eyes, images of
the past year played vividly in my mind like a cinema, forcing me to relive the
drama, strife, and eventual triumph I had witnessed in a mere 12 months’ time.
Warm, gentle tears streamed down my cheeks and leapt to the sand below just as
a sliver of the sun began to crest the blue green waves to the east. Slowly, a
bright orange fireball began to climb into the far off sky, scattering the lingering
gray clouds and burning off the light mist that hid the waves. Birds floated
effortlessly through the yellow layers of light as shadowy dots, disappearing
on their journey to faraway lands and seas. White wave crests exploded as they
collided, blowing clouds of watery diamonds high into the air and churning the
green ocean into a frothy whirlpool as the water charged toward my feet.
Quietly I raised my face to the heavens, my mind clear, my
heart light, and I prayed a single, simple prayer, “Thank you, Lord, for your
goodness.”
I have found it hard over the past few months to completely
express my thoughts and feelings since Hazel entered the maintenance phase of
her treatment. We were always told that this phase of treatment was “easier”,
that it was where you “wanted to be” in your treatment course because it meant lower
doses of chemo, fewer hospital visits, and a lifestyle that would feel
“semi-normal”. Given these statements, I made getting Hazel to maintenance
phase my ultimate goal as soon as we entered induction phase in April of 2017.
I saw each new phase of treatment as little more than a milestone on our
journey toward maintenance, closer to her bell ringing, and closer to being
cured. I created charts and tracked her progress, planned for the official
first day of what would be her final and longest phase of treatment, and I
daydreamed about what it would be like to return to a more “normal” life devoid
of hospitals, fevers, and cancer concerns.
Like many Leukemia families, we experienced several setbacks
over the transitional months between induction and maintenance, most of which
seemed to involve hospital stays, additional medications, and even more side
effects. Our journey to get to maintenance was smoother than most, but rockier
than some, and as we approached the day when Hazel would transition to this new
phase I found myself with a new, heightened anxiety that bordered on manic. I
was so concerned with getting into maintenance that on the last few days of the
transition I could barely sleep, waking at all hours of the night and letting
my mind wander and worry about anything and everything associated with our
journey. I would get up in the middle of the night and just watch Hazel sleep,
nestled gently into the crook of Elizabeth’s arm and silently dreaming the
sweet dreams of a 3-year old. I prayed over my family incessantly those nights,
all asleep in their beds, all safe, but all under my watch.
The day finally came when the oncologists told us that Hazel
would officially transition to maintenance and that 18 months from that day,
would be ringing her bell. Sitting in the infusion room on the 11th
floor of NCH that day, my world changed. I had been on what seemed like an
unending, ever-faster rollercoaster of emotions and anxiety, careening toward
this major goal that seemed like it would never be realized, and then suddenly...all
of that stopped. I felt like I needed to rejoice, dance, scream, done something
to outwardly show how happy I should have been, but for some reason I just couldn’t.
I was numb and felt somewhat emotionally lost. That five-minute conversation
will be etched forever in my memory as one of the greatest moments of my life,
and yet it was over in a flash and I was left sitting in the infusion room
confused at what to do next.
We are now two months into maintenance phase and I can’t
help but feel that while everything has changed, nothing is really different.
We are able to do much more as a family now and we visit the hospital far less
than in the early phases of treatment, but we still fear fevers, we still have
chemo, we still sanitize EVERYTHING, and we still live with cancer. Most of
all, I am still tired. I am tired of everything being hard. I am tired of the
constant struggle of remembering medications, dosages, cell counts, and side
effects. I am tired of bloodwork and chemo. I am tired of watching Hazel put on
a brave face when we load up the van to head to the hospital. I am tired of
telling her that she can’t play in water, that she can’t be in the sun, or that
she can’t eat in a restaurant. I am tired of chemo holds, nagging questions,
and the constant worry that Leukemia will once again rear its ugly head and
shove its way back into our life. But even though I am tired and numb and lost,
I remain thankful.
My family has experienced a tumultuous year of pain and
tragedy. We were caught in the throes of despair as one of our own suffered
tremendously, and had our hearts broken with each devastating setback. My
children have lived with death on their doorstep, a dark cloud of anxiety
surrounding our every waking moment. We have said goodbye to pets, family
members, and longtime mentors. We have lived with heartache, fear, and
frustration. My family has wept for months on end, with seemingly no end to the
darkness laid out before us. We have watched helplessly as our peace has been
shredded and stripped away at the hands of an ugly, faceless tormentor. My
family has experienced loss in its truest sense, and yet, we are not lost.
Even in our darkest times, when we are brought to our knees
in anguish, breathless from battle, my family has been protected by the hand of
God, guided by his light and strengthened through his Word. This experience has
brought each of us to the end of ourselves, pushed so far beyond our own limits
that our only choice was to rely on Christ’s reckless mercy to hold us up. It
has only been through losing myself that I have truly found God. I have seen
His work, felt His presence, and experienced His love.
I am an insignificant being, an anonymous voice among the
throngs that endlessly lift to Christ’s ears, and yet, I feel as if I have met
him in person. Cancer is horrible, it is devastating, and it robs you of many
things, but it also puts you in a place to receive indescribable compassion
from the people that surround you. Christ’s love pours out on our family daily and
I am continually amazed at its depths. My family has struggled, and we continue
to struggle, but we are so blessed.
In late 2017, I received an email from an organization
called Believe In Tomorrow Children’s Foundation, which provides respite
housing for families of critically ill children. Our family was chosen to become
part of the BIT program and they offered us a chance to visit Ocean City in the
Spring/Summer of 2018. We were unable to take a family vacation last year as
Hazel was far too sick to travel anywhere over a few hours from her main
oncology department. We had many “staycations” where we enjoyed some time off
of work and just being around the house and town, but we never departed for our
typical Miller family exodus from Ohio to touch the Atlantic off the shores of
Hatteras Village in the OBX. The BIT trip made a lasting impact on my family’s
life, and helped shift my perspective back to where it should have been all
along.
On that brisk, early morning, I was not alone. I felt a
small, warm hand slip into mine as the sun rays scattered onto the beach. Elizabeth
wrapped her arms around me and snuggled into my sweatshirt. I look down to my
left as Gideon buried his head into my hip, still rubbing sleep out of his eyes.
Rora, golden blonde curls spilling out of the front of the hood of her bright
pink sweatshirt, wriggled in between Elizabeth and I. Finally, Paul walked up
alongside us, eyes focused forward in a far-off gaze and mouth open in awe. On
Paul’s cocked hip, arms thrown recklessly around his neck and head leaning into
his shoulder, sat Hazel. My little brood stood in silence, watching the world
wake up, each lost in our own thoughts, managing our own waves of emotions as
we communed with each other and with our God.
My mind wandered to
a passage in scripture that had always brought me comfort:
“But we have this
treasure in jars of clay, to show that the surpassing power belongs to God and
not to us. We are afflicted in every way, but not crushed; perplexed, but not
driven to despair; persecuted, but not forsaken; struck down, but not destroyed;
always carrying in the body the death of Jesus, so that the life of Jesus may
also be manifested in our bodies. For we who live are always being given over
to death for Jesus’ sake, so that the life of Jesus also may be manifested in
our mortal flesh. So death is at work in us, but life in you.” – 2 Corinthians
4:7-12.
I had always used those verses as a mantra to describe how
strong Christians were, to explain that even though life on earth can be hard,
Jesus’ strength is what brought us through. And while that is still true, I now
have a different understanding of that passage. Until now I made that passage
about us, about Christians and our ability to lean on Christ to hold us up, to
build our strength, to recover from our own tragedy and give glory to God through
our triumph. But now I have a different interpretation of those verses, because
now I understand that it is not through our eventual triumph that Jesus is
glorified, but through how we handle ourselves while in the midst of the
struggle.
Standing on that beach early in the morning looking out over
the Atlantic Ocean and surrounded by “my people” is as close to heaven as I
will ever experience on earth. My family is battered and we are scarred. Our innocence
is gone – we are shell-shocked from the battle that was waged over the past 12
months inside our own home. My kids have witnessed things I never wanted them
to see. They have watched as my heart broke, saw me become a shell of who I
once was. They saw worry and fear consume me, change me, destroy me. The devil
declared war on my heart and after a year in the trenches trying to protect it,
I am...tired. But I am not broken. I serve a living, loving God that is bigger
than cancer. He is the Creator, Redeemer, and Healer. My God is all-powerful,
all-knowing, and all-forgiving. My God is sovereign and divine. My God is eternal
and so is my strength in Him.
“So we do not lose
heart. Though our outer self is wasting away, our inner self is being renewed
day by day. For this light momentary affliction is preparing for us an eternal
weight of glory beyond all comparison, as we look not to the things that are
seen but to the things that are unseen. For the things that are seen are
transient, but the things that are unseen are eternal.” – 2 Corinthians 4:16-18
