Saturday, August 15, 2015

Blurry Beauty

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. 

Grace has given me permission to share it with all of you who have prayed and loved us so well through the past three years - such a long time to remain faithful through another family's journey. Each and every one of you is a gift to all of us! I hope to write more about our overwhelming thankfulness for all of you as we celebrate three years of survival since Hannah's diagnosis -- and also a year off of treatment in just a few more days. In the meantime, it means a lot to me to be able to share Grace's words with you, and I think many of you will appreciate remembering and pondering these things together, as we celebrate three years of miraculous life for Hannah.

Here it is, originally written in the Fall of 2014:

Blurry Beauty
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.
            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 rifle 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.”
            And I laugh.
Treasure from the Junk Drawer
copyright © Sara Shull
•All text and poetry by Sara
•Art illustrations by Sara
•Photos by Sara or the Shull kids
~~~~All rights reserved~~~~

Bible verses:
The Holy Bible, English Standard Version (ESV)