The Power of the Waymaker

1294323_920311008097494_8403322161241851910_oBack in 2001, on the June day that we found out Greg had Chronic Myelogenous Leukemia, he was 35 years old and healthy: the kind of healthy that held season passes to White Water Park, that hiked at Fort Mountain on Saturdays with friends, that helped care for five foster children, even after a long day at work. Although I knew enough to suspect leukemia and start praying immediately the moment I heard “extremely high white blood cell count,” I knew nothing of the sorts and types. CML was an old man’s cancer, with an average age at diagnosis of 65.  At the time, we had a seven-month-old baby, her newly adopted six-year-old sister, and were houseparents at an emergency foster home. There was no time for cancer, and there certainly wasn’t time to die.

I cannot tell you how little we cried then. There was no time for sorrow–the house was full of young children; Greg felt well; we had a window of time in which to make decisions. Our only instructions were to watch intently for signs of the tipping point–blast phase–which indicated the almost always lethal transformation to AML. I set about researching treatment centers and survival rates, and I read message boards searching for other young CML patients. There was no Facebook or Youtube then; although informative, the Internet was far from its current “click three times and you’ll find 725 people in the same rare boat you are.” But I knew we needed a young survivor, a waymaker who could say, “Avoid that, but make sure to do this no matter what.”

And finally, the Internet coughed him up–Jim, a younger man who, like Greg, had been the picture of health at diagnosis. He was in college, an active outdoorsman, with a new girlfriend–and cancer. He was about one year ahead of Greg in the bone marrow transplant process and was kind enough to spend some of his hospitalization emailing us. He told us questions to ask and answered all of ours; having navigated the ins and outs of treatment center selection, he knew how it felt to be blindly making potentially life or death decisions.

Jim was the only young person on the planet we knew with CML, but he was enough. One person who knew what we felt. One person who had shared our bone-rattling fear. One person who had walked behind that four-foot thick lead door to receive radiation, who had spent a full month of his life isolated, a vomiting skeleton in a hospital room, who had lost his hair but not his dignity or his selfhood. We had someone ahead of us who had emerged not only alive but also able to type the words, “Life is good and I count my blessings every day.  May they find their way to your door, too.”

When Greg contracted a rare, severely life-threatening pneumonia after the transplant–a pneumonia that kills 66% of those who contract it–well, it was no real surprise that Jim had also survived that, too. His presence was a comfort, an affirmation--reading the medical literature terrified us, but Jim’s words were reassuring. Cancer and all that it required–a cross-country move, new doctors, adjusting to downtown city life–became doable, simply because a stranger had done it first.

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2001

We began to refer to him simply as “The Waymaker,” a shorthand that said it all. News that he was “back to teaching . . . finishing [his] dissertation project, and making preparations for the wedding” cheered our frightened hearts. A full life–and perhaps even a happy one–was possible after a bone marrow transplant. Jim had one.

Now, we are again in a situation that requires Internet waymakers. We have taken comfort in anencephalic babies’ birth videos–seeing the babies squirming and crying and alive gives us hope. Just four days after Stephanie Grace’s  diagnosis,  we saw Kevin and Lindsey Dennis’ sweet daughters’ videos. The peace of God was upon them; their joy at their daughters’ births was just as authentic as any parents’. From reading books and birthday cakes to crocheted caps, we began learning how to prepare for baby Stephanie’s birth.

Granted, like one relative cautioned, such videos are edited–God’s tear bottle in heaven likely holds both our tears and the Dennis’, for their sadness is certain. But videos like theirs are important. In a situation like ours, the heartbreak is already fully known; the potential for true joy is not. Seeing Dasah and Sophia allows us to anticipate delight in addition to devastation.

Greg came in from working in the yard last Sunday to find April and I curled up in the green armchairs, laughing and crying as we watched Rachel Alice Aube’s birth video. The hospital bed is crowded for family pictures–in Rachel’s 43 minutes on earth with her three siblings, there is so much love. The photographs of her delighted elder sister holding her are particularly bittersweet. Each photo is a testament to the power of family, and for a family that now feels weak and weary, remembering that power is a comfort.

We also watched Grayson James Walker’s unforgettable video depicting a father’s love for his treasured son. Little Grayson’s monogrammed hat perked April up immediately: “Hey! They got him a monogrammed hat!” (And our shopping list grew.) It delighted April that Grayson’s parents chose to show his eyes; she was strengthened by strangers who were proud of their son, proud of their family. To see the Walkers piled in the hospital bed with their young children surrounding their baby brother is to remember that babies are good gifts.

We may never meet our current waymakers–we’ve never met Jim.  But the Dennises, the Aubes, and the Walkers, in choosing to share their stories, are doing more than preserving their own children’s memories; they are also showing people like us that if we get past the overwhelming anger and all-enveloping sorrow, there will be love. Such sweet love.

The held hand, the kissed cheek, the  forty-three precious minutes–we can hope that they will be ours, too.

We are walking the same way.

 

 

 

 

 

 

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