2005 Journal Entries

The week of my thirty-first birthday I watched an intensivist monitor Archie’s oxygen saturation rate, as a nurse held his hips steady, as a doctor stuck a needle in his spine and clear fluid, like water, dripped, dripped, dripped into tiny test tubes which, when full, were set aside, stacked in a wire holder.

That morning I sat on a colorful vinyl couch in the corner of the Children’s Hospital as my husband stood outside the door, too squeamish to watch wide-eyed like me. After he finished the spinal tap, Dr. Stroud hammered a hollow needle into Archie’s hips, filling a syringe with my boy’s bone marrow, golden red. Archie bucked around the table, his body and mind sedated yet still capable of registering pain. “Oh, a little bit of a hula,” Dr. Stroud exclaimed. We all laughed, the doctor, the nurse, the intensivist and me. My life is so uncommon that this sort of situation, this kind of casual exchange with a doctor during such an unusual procedure, seems commonplace to me.

After the procedure was over Dr. Stroud finished making the slides, dropping a glass cover over the piece of glass holding Archie’s life’s blood. His fingers, misshapen from years and years of exposure to chemotherapy drugs, moved expertly. He’d done this a million times before, I’m sure. He showed me a sheet of printed stickers before he peeled one off, thumbing it onto the first slide. “Mom? John Archer Moore,” he read, gesturing to the name. “Agreed?”

I shook my head. He showed the stickers to the nurse, too, before he packed the slides up and left the room carrying them, an assortment of cells carrying the answer to the question, “Did the treatment work?” A tiny box filled with a temporary answer to the overwhelming question that, even still, forces its way into every moment of every day of my life. Did the treatment work?

The doctor’s office never called with the results. We knew that meant things were fine. Knew it in our hearts. Knew it just by looking at Archie, watching him as he maneuvered through his day. But still I’d push John each morning. “Will you please call today?” I asked as he walked out the door on his way to work. “I don’t want to do it myself.” I very rarely call a doctor’s office, inquiring about Archie’s condition, or test results, or what-have-you. I wouldn’t do it when he was in the NICU and I hate to do it now. I am always so fearful of what the doctors may or may not say. In our world, this odd place, the unthinkable never seems so far away.

“Merry Christmas and praise God,” Carol exclaimed when John talked to her on the phone and she said that Archie’s bone marrow and spinal fluid were clear of cancerous cells.

John repeated the nurse’s words to me over his cell, on his way to work. “She said, ‘Merry Christmas and praise God.’” I smiled. Yes, indeed.

The babies are five months old now, smiling and sweet and fun. They are sitting with Tiffany as I type, one on her lap and one tucked up against her thigh, and telling her secrets in their soft baby voices. Does one know what the other is saying? Do they understand each other? Sometimes I think I understand exactly what they mean, these new souls so fresh from heaven.

“Three babies; three brand new souls!” exclaimed beautiful Elizabeth at a baby shower Kit, Jack Sharkey and I attended as three of the five guests of honor. Elizabeth, who has Down syndrome, is a remarkably accomplished and insightful young woman.

Archie loves the babies. He lies next to them, snuggling in as closely as we allow him to, and pets them. “Ohhh,” he says, his lips puckered into a perfect circle. The babies always laugh in appreciation of his gesture, and usually swing their bodies around to put their feet on his chest. My heart swells as I watch them fall in love with each other.

Kit and Jack Sharkey are so much bigger than Archie was. And they seem so advanced in their development. They roll, and push up on their arms, and stand on our laps, and reach for toys with such dexterity. I often wonder if they really are advanced, or if they just seem so as all I know of babies is what I’ve learned from Archie.

I often think of the trip home from the well-baby check-up this fall when John explained how strange it feels to have an appointment when a doctor tells you that things are all fine with your children. “You’re not sitting there, listening for something, anything that you can hang your hope on.” I nodded as he spoke, knowing the end of his sentence before he even came close to finishing. John sounded to me as if he were choking on that raw emotion that’s become so familiar to us, the kind of feeling we’ve gotten good at hiding but always seems to lie just below the surface, no matter how far away it sometimes feels. Or maybe I just heard what I was feeling, that bubble that wells up in my chest every so often, momentarily clouding my eyes.

Time is rolling forward. My babies are growing up, all three of them. Archie is cruising and his first steps don’t seem so far away now as they once did. A single red, heart balloon tied to our mailbox marked the second anniversary of Archie’s surgery. Buffeted by the wind, the balloon managed to remain aloft all day, a testament to the events of a day that now seem so far back. The sleepless nights of newborns have passed, and the Christmas lights are out. Now Archie is back in school and we’ve had our “end of treatment” appointment at the clinic, sitting where we started. This time, though, I sat at the table without John and Tiffany, without the babies inside my huge belly, but instead holding Archie on my lap, all pink and strong.

This month the babies have been sick with brochiolitis and ear infections. Archie’s nose has been running for weeks, but his cough, a horrible, barking thing, has finally disappeared. The days of low platelet counts, and finding Archie bleeding in his crib at night, and slides so bereft of platelets that I’m chilled to the bone thinking of how close we came to losing him, once again, have passed. Through it all we’ve survived. “Keep on keeping on,” John says. Heads down, minds on the future and all the good to come.

Archie has another bone marrow aspiration and spinal tap in two weeks. Another early morning, another pre-dawn day. A nervous wait. We are anxious, but hopeful with anticipation. Please, God, keep it away. Please, God, give us more Saturday morning cartoons, and fights over vegetables at the dinner table, and art projects sent home from school, and shirt sleeves soaked to elbows with sudsy bath water each night. Please, God, give us normal, whatever that is.