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Three years ago today - on August 15th, 2012 - three-month-old baby Hannah was diagnosed with Infant Leukemia and we were all plunged into the deep waters of a previously unimaginable trial. Every member of our household has been affected in profound ways. Our oldest daughter, Grace, now a Senior in college, wrote a powerful piece about her experience that was published this past spring in the Bethel University literary journal Coeval. Reading it reminds me of the darkest days surrounding Hannah's initial diagnosis, when any attempt to look forward was shrouded in a dense fog of fear and uncertainty. And it expresses the joy we experience in having Hannah with us now, happy and whole. And it also points to the brightest Hope, regardless of our current joys or trials.
Here it is, originally written in the Fall of 2014:
Blurry
Beauty
by Grace Shull
by Grace Shull
I don’t like waiting.
This past August I ordered a pair of Chuck Taylors from an online shoe
catalogue. They were to be my first Chucks, and I was eager to pull my hot pink
high-tops from the long, narrow box in which I knew they would arrive.
Estimated shipping time was about four days. I checked the tracking website
frequently, following the shoes’ slow progress from Kentucky to Minnesota. It
was highly unsatisfying. Movement showed up only a few times a day. I was
forced to go on with my life in between my checks. Go out to feed the ducks.
Check package. Wash my hair. Check package. Look at Face - check package -
book. Check package. Check package. Check package.
A little over two
years ago, in the same month I bought the sneakers, my family received some
shattering news.
I remember where we
were when my dad took the call from the doctor’s office. One of my sisters and
I were in the living room with him, the afternoon light coming through the big
glass window behind one of the couches. Our pediatrician explained to my dad
what my mom, sitting in a small white exam room and hugging her youngest
daughter against the shock, couldn’t possibly relay over the phone. I could see
the fear in my dad’s face as he sat there and listened, his hazel eyes flicking
back and forth as he tried painfully to grasp the doctor’s words. My stomach
grew heavy as I began to understand, from my dad’s half of the conversation,
how serious things were.
He explained to us,
after getting off the phone, that they had taken my baby sister’s blood and
counted her white blood cells. They believed she had more than 200,000 cells
per microliter of blood, which was extremely high. The most likely reason for
this, the pediatrician had told him, was that Hannah had leukemia.
Pain squeezed my
chest, and I gasped, tears jumping to my eyes. No. It couldn’t be. Not my
little sister. She was only three months old. She couldn’t have cancer. There
had to be another explanation. They’d miscounted her cells. Something else,
something weird and harmless, was messing with her blood.
“God,” I prayed,
“please let it be something else.”
I said I hated
waiting. I do. The part that really gets to me is the fact that I, as a human
being, must experience time as a linear progression from one point to the next.
Yes, I understand that this is necessary, given our creaturely limits. I know
I’m not big enough to contain and comprehend all eternity at once. I get that.
Sometimes one moment at a time is almost too much to handle. Still, following a
timeline is hard. I want to jump ahead for a peek at what’s next, but I’m stuck
here. It’s a little like flipping through a photo album, where every moment has
its own snapshot, but you can’t look ahead. You can look back all you want, if
you thumb through the pages of memory. Sometimes it takes multiple tries to see
everything that’s there in those old photos.
My mom and dad went
with my sister to the hospital and began to watch and wait, hour after anxious
hour. They tested her blood again, and the diagnosis was confirmed. Hannah had
acute leukemia. The first blood count had been off - it had been much
too low. When her blood was counted by the children’s hospital’s more
sophisticated equipment, we learned that her true white count was over one
million. A normal count is considered 5-15,000.
Fear gripped my heart
again when I was told that the enormous amount of white blood cells slogging
through her veins put her at immediate risk of a stroke. It was crucial to get
rid of some of the leukemic cells. They hooked her up to a big machine that
pulled her blood out and pumped it back in, filtering out as many white cells
as it could. They did this twice.
I stayed at home with
my nine other siblings, experiencing most of this from a distance. We began to
pray together, pleading for Hannah’s life. My mom had rarely spent even a night
away from home in the past eighteen years, so it was strange as we began to run
the house without her. Several days went by, and she and Hannah remained in
intensive care. The doctors managed to reduce the number of white cells in
Hannah’s blood. The immediate danger subsided a little. She wasn’t dying now.
We began to exhale some of the fear that had lodged inside. A prognosis was
given: she was given about a 50-50 chance. The medical plan began to be
explained: if Hannah’s cancer cells responded to chemo, we were about to enter
into a grueling two years of treatment. An ache eased in to replace the
original sting.
Two years.
Breathe.
One. Moment. At. A.
Time.
Two years.
That’s a long time to
wait.
Another thing about
waiting is that it’s usually not a sedentary experience. Maybe princesses
locked in towers with nothing to do but brush their hair and look out the
window can manage it, but I have rarely found waiting to be a passive activity.
This is a big bummer, and a big blessing. If I had my way, I’d rather not do
anything until I get what I want. But that’s not how things work. In the
meantime, life must be lived. Time may crawl when I’m doing the laundry,
running errands, eating dinner, but if I stop trying, stop moving, stop forcing
my feet to slide off the bed every morning, time will drag like the trailing
skirt of a widow’s dress. Crying is good. Collapsing onto my fading flowered
quilt in exhaustion and telling God I can’t take another step is perfectly
fine. But I then have to let Him hold me up and help me hobble forward. Giving
up is not an option, because there is always hope.
A moment in life is
like a single photograph. When I’m inside that moment, when it’s a hard one,
and the pain has buried itself behind my ribs, it’s difficult to see everything
that’s going on. It’s difficult to focus on the glimmers of light and snatches
of laughter because the darkness feels so real, so cold and empty and black,
like a spot under the ocean that catches a bit of sunlight only on the clearest
days. In moments like these, the fear and grief cut in so deep that I’m trying
to see through tears. Usually the image is blurry.
Blurry photos are
hard to make out. The colors blend and I can’t tell exactly what’s happening.
Gestures and expressions that surely mean something are just a smudge of
motion. There are probably some smiles there, but they’re hard to hold onto.
Life is a photo album
with an end I can’t yet see. When my eyes dry a bit and my hands grow a little
quieter, sometimes I riffle back through the old pages. And I begin to see
patterns. Some of the pictures look clearer than they used to, even a few of
the painful ones. When my brain unfogs for a minute, I can see that there is
some beauty here, maybe even in the dark photo I’m in right now. I can’t seem
to find it, but maybe - just maybe - it’s there. And I turn back to the current
page and try to look around more carefully.
Two years. A long
time. Chemo was hard. Danger was never far away. Fatal infections were often
possible. Relapse was never out of the question.
Two years. A lot can
happen. A lot did. A lot of things, including a lot of really bad things, also
didn’t.
Two years is a long
time to wait. And we waited. We ate, struggled, laughed, cried, fought,
floundered, and prayed our way through the waiting. The darkness was real. But
God, the unconquerable Light, was there, too.
Hannah is still
alive. She is a beautiful, wonderful miracle. Her light brown hair is getting
shaggy. My mom doesn’t want to cut it. If you put the hairbands in just the
right spots, you can almost pull all her hair into three short pigtails. It’s
not yet long enough for just one.
She’s the only one of
eleven kids without blue eyes. They’re “sea foam green,” as we like to call
them. Sometimes they look almost gray. They sparkle when she laughs, which she
does often. She is unique. She is special. We love her to pieces.
It’s actually
difficult not to take her current health for granted. Even after those two long
years, it’s hard to remember to pray that she will continue to do well, that
she won’t relapse. We think all her cancer cells were killed, but it only takes
one. God forbid that there are any left.
Hannah is still here
with us, but there is another family at our church who just lost their father
to cancer. I know their prayers for his life were no less fervent. I know their
faith was no weaker than my own frail confidence in our faithful Savior. I know
that God loves them just as much as He loves us.
But He let their
father die.
It is still hard for
me to look at that photo. It’s hard to see how there is possibly light in it.
While a cancer patient’s still alive, there’s always at least that small sliver
of hope that they can make it. But once a person dies, what hope remains? What
is there possibly left worth waiting for?
To find the hope in
this photo requires looking at some other photos, too. And they’re actually
photos that haven’t been taken yet.
Did I say we can’t
look ahead in the photo album? Sorry, I guess I wasn’t clear. We might not be
able to see our own future photos, but there’s a “cheat sheet” album God’s
given His children to grab whenever they’re confused.
It’s called the
Bible. It has some old photos - some really old ones - and some so bright and
colorful that the printer inks of this world can’t even begin to mimic their
vibrancy. The Promise Photos. There’s a huge wedding party in one of them. I’ve
seen a dazzling golden city in another. In one of my favorites, there is a
King, with snow-white hair and scars in His wrists, standing with lots and lots
of joy-filled people around Him. The label under the photo says, “Death shall
be no more.” Our friends’ father is in that picture - perfectly healthy and
happy. There are thousands of people there.
It’s these sorts of
photos I have to look at, over and over again, when the pictures in our albums
are too dark and fuzzy for me to understand. It was these that kept my heart
from flying apart in those two years.
So, the Chuck
Taylors? Waiting so eagerly for them must be silly compared to the heavy
waiting our friends must be pushing through, right? Of course the shoes are not
nearly as important. But God is the King of all joys, both great and
small. He gave Eve to Adam, and He also gave them daisies. He gave my family
many joys in those two years of waiting. Light came in sparkles and in
sunbeams, piercing through the darkness. Shoes can be rays of light sometimes,
and so can laughing little sisters.
The Chucks did come,
and wearing them makes me smile. So does Hannah. “Soo,” she calls my pink
sneakers.
“They’re shoes,
Hannah.”
“Soo!”
Yes.
And I laugh.
