“I think it’s a terrible idea,” she says, her smile threatening to crack her face in half.
“Good,” he says. “I thought you would.”
And the adventure begins.
*
*
The state’s premier pediatric facility was designed in collaboration with doctors, nurses and other health care professionals, as well as parents and children. Earning worldwide recognition for its family-centered environment and expert staff, it also had the area’s only pediatric oncology program. They provided diagnosis and treatment to kids, ranging in age from newborn to eighteen years old.
Comprehensive treatment was provided for infants, children and adolescents with cancer and blood disorders. Special expertise and programs existed for children with leukemia, brain tumors, lymphoma, hemophilia and sickle cell disease.
Volunteers had to submit an application with references, provide an updated immunization record, agree to a tuberculosis test, complete an orientation to hospital policies and procedures, and commit to a minimum of four hours each week for at least four months. I wasn’t sure about the last requirement, but decided, if I don’t meet it, I’m not real worried about being sued.
It was a cold morning when I arrived for my orientation. Though I expected to be joined by others, it was just me and Carissa Kennedy, my bubbly guide. “On behalf of volunteer services, welcome,” she said, with a brilliant smile. “We appreciate the time you’re taking from your personal life. I hope you gain as much from the experience as the patients do.”
“I have no doubt.”
“Our volunteers are a talented group of people who make a huge difference in the kids’ lives and there are lots of opportunities to make that difference. You could greet visitors and patients, be a liaison for patients and families, or even assist in the emergency room. Some volunteers like to deliver flowers and mail.”
“I was hoping to do something more directly with the kids.”
“We have many volunteers who visit with patients or hold the hand of a chronically ill child. Some read to the kids and others assist those with disabilities.”
“I’ll take it,” I said.
Carissa looked at me. “Which one?” she asked.
“All of the above.”
It was a child-friendly atmosphere, including a life-sized playhouse. We were at the end of a corridor when I spotted a plaque on the wall. It read “Everybody can be great because anybody can serve. You don’t have to have a college degree to serve. You don’t have to make your subject and your verb agree to serve. You only need a heart full of grace. A soul generated by love.” – Martin Luther King, Jr.
“I like that.”
“Me, too,” she said, “but my favorite quote is, ‘We cannot always return an act of kindness to the person who bestowed it, but we can pay back the debt by helping others.’”
“Nice.”
As we marched up one corridor and down the next, Carissa filled me in on my rights as a volunteer. “Just so you know, you have certain rights when you’re giving your time here.” She began counting on her fingers. “The hospital promises you a clear volunteer assignment, fulfilling work, training, informed involvement, supervision, respect, your time put to best use, safe and healthy working conditions and recognition of your service.”
“Wow, good for you. That’s a lot to remember,” I teased.
She giggled.
“Recognition?” I asked. “Are people really concerned with that when they volunteer?”
She shrugged. “Nobody that I’ve met yet.”
Upon completing my week of training and orientation, I started spending time with the kids. At first, I read to two of the older ones – sixteen and seventeen, respectively – who were near their end. Both were sedated and submerged in hospital-induced comas. After each page I finished, I looked up for a reaction. There was none. Through my own ungodly suffering, I kept right on reading, hoping that on some level my presence brought them some comfort.
I went whenever I could physically make it, which wasn’t nearly as often as I would have liked. For the first time since being diagnosed with this evil and greedy disease, my will was no longer as strong as the bad cells that multiplied inside me.
It’s difficult to explain the symptoms. I’d suffered from the flu a few times in my life; times when body aches, cold sweats, fever and chills made me want to lay down right where I was and curl up into the fetal position. With cancer, this would have been a good day. Cell by dying cell, my body was shutting down.
Two weeks had passed before I was introduced to some of the younger children by the nursing staff I’d grown to care for. These honest, little people asked me some of the strangest questions. “Why is your nose so big?” one small lad inquired.
“It was a gift from my father.”
“Do you like candy canes better than candy corn?”
“I’ve never met a candy I couldn’t get along with.”
“Why are you really here?”
Even though I knew the answer, this was a tough one. “To make you smile,” I said, but the truth was a bit more selfish than that. Deep down, I knew I was there to face my paralyzing fear of death and to make peace with it. It seemed reasonable enough. These children had just come from heaven and were already returning home. Who could be closer to God than that?
Each time I stepped into the hospital, I nourished my soul, all the while wondering why I hadn’t been walking through that same door for years. And each day was different.
I met a ten-year-old girl suffering from an inoperable brain tumor who wore a rainbow-colored clown’s wig given to her by one of the Shriner’s. “If people are going to stare, then let’s give them something to look at,” she told me.
I’d never felt so much pride in the strength of another person’s spirit.
The very next day, I passed a small boy who was crying. “Please, Mommy,” he begged, “don’t let me die.”
I felt my knees start to give and caught myself.
Nurse Pynaker came out of the room and looked at me. “He’s not ready,” she whispered.
“I guess not. I’m fifty-seven and I’m not even ready.”
“Age doesn’t matter,” she said, “The soul knows when it’s time.”
It was a random Thursday morning when I stepped into a little girl’s radiant smile. She was sitting at the end of the day room, playing with a doll. When she saw me, her big blue eyes lit up. I could feel my heart melt. The shading on her scalp told me she’d once had dark hair. The paleness of her skin told me her life was fading too. I approached and extended my hand. “I’m Don,” I said. “And what’s your name, beautiful?”
“Sophia,” she said and put down her doll to shake my hand. We sat for a few moments when she turned to me. “I have cancer,” she said.
“Me, too.”
“Mine is called Lymphoma.”
I nodded.
“Are you scared?” she asked.
I hesitated, unsure of how I should answer; whether or not I should be honest. But she saved me by putting her hand in mine.
“There’s nothing to be afraid of,” she promised. Her eyes were penetrating and wise beyond their years. “We’re not alone, ever…none of us.” She had a sense of her own power and shared it selflessly.
I had no choice but to believe and fall in love with my new friend, Sophia.
As knowledge is power, I conducted my usual research and discovered that Sophia was fighting a vicious monster. Lymphoma – sometimes referred to as blood cancer – was either categorized as Hodgkins or non-Hodgkins. In Sophia’s case, the cancer cells were most prominent in her marrow before spilling over into her blood where it quickly spread to the lymph nodes. Though non-Hodgkins Lymphoma was the sixth most common cancer in the United States, at Sophia’s age, she’d had a one in one hundred thousand chance of getting it. And she’d hit the lottery. What luck.
After a few visits, Sophia confided in me. “The only thing that bothers
me is that I’ve lost my hair,” she said, the sorrow in her voice apparent. “It used to be curly, you know.”
I nodded, feeling a pang of guilt. I’d never received chemo or radiation treatments, so my brown locks were still intact. I made my decision right then and there. I haven’t been bald since serving in Vietnam, so it might even feel good, I figured.
Just as I finished the job and unplugged the clippers, Bella and Riley stepped into the bathroom. Riley shook her head. “You really are a beautiful man, Dad,” she said, her eyes misting over.
I shook my head. “I’m not sure about that, but I do have a beautiful daughter.”
Bella stepped up, rubbed my head a few times and then kissed it.
“And a beautiful wife,” I added.
The following day, Sophia watched me walk into the day room, but didn’t say a word. I approached her and smiled. “You didn’t know it was me?” I asked.
She nodded. “I’d recognize you anywhere,” she squealed, her eyes sparkling. “But what did you do?”
I winked. “It’s only hair, right? Who needs it?”
She jumped into my arms for a hug.
“Looks like we’ll both save money on shampoo,” I told her, trying not to cry.
While still at the mercy of my own death sentence, for some of the finest days of my life, I visited with Sophia whenever I could. Most of the time, we didn’t talk. We just held hands. Though I hoped I was helping her, I knew better. The healing power of her touch was unlike anything I’d ever experienced.
I contacted my lady friend at the Make a Wish Foundation and told her Sophia’s story. I had no idea I’d called too late.
It was a Wednesday evening, just past dusk, and though I didn’t realize it, Sophia and I were about to speak for the very last time.
“If you had one wish that could come true, what would it be?” she asked.
The hair on my arms stood erect. I’d just contacted Make a Wish for her and I never did believe in coincidences. I thought for a second and said, “On the day I stand before God…that He’ll smile at me,” I answered. “What if you had one wish that could come true, what would it be?” I reciprocated.
She looked into my eyes and without hesitation said, “That your wish will come true.”
I almost chuckled until I saw she was serious. We sat there holding hands for a long time – or at least a long time for us.
Finally, she asked, “Do you doubt that God will smile at you?”
“I’ve done some things in my life I’m not proud of,” I admitted.
“But God forgives everything, right?”
“I guess that depends on which path you take in life.”
She shrugged. “But how can there be a wrong path…as long as you’re trying to get home to Him?”
I looked at her, but had no answer. Such wisdom for a little girl…
She yawned twice and I summoned the nurse to help her back to her room.
“Sweet dreams,” she told me, as I left for the night.
“Sweet dreams, beautiful. I’ll see you tomorrow,” I said and kissed her tiny forehead. I’ll never forget the miracle in her smile.
In all my fifty-seven years, Sophia’s funeral was the cruelest experience I’d ever endured – and from the pain in Bella’s eyes, she clearly felt the same.
Goodnight, Brian
Readers always ask me, “How did you come up with the idea for Goodnight Brian?” The truth is, the novel was inspired by a true story; I have a dear friend whose cousin suffered terribly from being poisoned by baby formula. The vast majority of the story, however, is fiction. In fact, Mama (the matriarch and central point of the story) is a combination of my grandmother, my mother, my mother-in-law, as well as a few other women I’ve met in my life who have inspired me.
When Brian is first diagnosed with metabolic alkalosis and the family is told that the infant will never be able to walk or talk, his tiny Italian grandmother—Mama—takes a defiant stand. She vows to make it her life’s work to prove the doctors wrong and immediately sets off on a course of tough love to do just that.
Goodnight Brian is an emotional tale about the strength of family bonds and the perseverance to do our best with the challenging gifts we receive. It is also a tribute to what happens when giving up is not an option. But mostly, it’s a story about unconditional love in its truest form.
The novel’s excerpt depicts two powerful scenes of progress—Brian clapping and then speaking his first words.
While Brian’s family—to include Mama—look on, Brian sings, “Ma…Ma…Ma…”
Mama wipes her eyes. “We just need him to string them together a little quicker and he’ll have my name down, too.”
“Then can we work on Dada?” Frank asks, playfully.
She nods. “I guarantee it.”
“Oh, I believe you,” he says, “And I’ll never doubt you again.”
“And from what I can tell, he’ll be crawling by the first snowfall,” she says with a wink.
*
*
Summer 1978
Mama’s house was the kind of place where each summer became the best summer of your life. And each year, Heidi, Steph and Ross spent the better part of the summer months at the cottage. It started off as weekends, but after enough begging on behalf of the kids these eventually turned into full weeks. By late August, their parents had finally surrendered and it was one giant slumber party.
Mama’s front yard was plain—except for the four trees she’d planted to celebrate each grandchild’s birth and a two-seat glider built by her late husband, now gone for ten years.
At the front of the house was the beloved three-season porch where the grandkids slept on air mattresses during spring and summer. At twilight, to the sound of rushing waves, they could hear whispered conversations in the darkness; neighbors sitting out, enjoying their safe little world. In the morning, they were usually greeted by robin red breasts foraging for food, or the occasional seagull begging for handouts just outside the screens. Beyond the screen house, at the very tip of the property, was a small wooden deck filled with mismatched chairs painted in different pastel colors.
A statue of St. Jude, the patron saint of desperate cases and lost causes, welcomed all guests at the beginning of a brick pathway that led to Mama’s sanctuary in the back yard. A day never passed when Mama didn’t kiss her index finger and place it on his weather-beaten head.
Plants and wild flowers sprung up everywhere. Just past the rose-covered arbor sat a small concrete bird bath with a weather-beaten Adirondack chair facing it. The chalk-red brick meandered in several different directions, but each path led to a round table in the middle of the courtyard, protected by a giant maple arbor. This table hosted hours upon hours of card games, rounds of Parcheesi and priceless conversation.
Fire-red sea grasses grew out of black mulch. Mama loved ceramic frogs and there were a dozen or so carefully placed around the secret garden. There were also a half-dozen bird feeders hanging about. Dragon flies and everything from blue jays to yellow finches claimed the place as home—or at least their summer home. The occasional seagull screeched overhead, drowning out the portable radio that Mama stuck in the window to listen to the Red Sox—or “my boys,” as she called them. An outdoor shower abutted the house and, if you came in from the beach, you weren’t allowed in the house until you got under it and rinsed off every grain of sand.
Bees pollinated the hydrangeas surrounding a big green lamppost that came on at dusk, creating even more atmosphere. Some nights, Heidi, Steph and Ross spent time there in silence, listening to the crickets and peepers. Most nights though, they chased fireflies with empty mayonnaise jars, while Mama sat in her chair cheering them on.
It was such a magical place that even the occasional horsefly attack was worth the risk of spending time there.
While Mama hemmed a laundry basket filled with men’s slacks, Heidi, Steph and Ross played in the backyard. Mama placed a blanket on the grass and put
Brian on his belly. She then dropped his favorite toy—a plush puppy that squeaked when you squeezed its belly—on the far side of the blanket across from him. For hours on end, it looked like he was swimming, but going nowhere. “Eventually, he’ll learn to crawl,” Mama promised. To the untrained eye, this would have appeared awfully cruel, but Mama cared too much not to give him the tough love that he needed to make progress.
After spending countless hours struggling and failing to crawl, Heidi finally spoke up in her tiny cousin’s defense. “Mama…please. It’s too hard for him.”
“Nonsense,” she said. “It looks like he isn’t going anywhere, but he’s actually learning about perseverance; about never giving up.”
Steph looked down at the blanket to find Brian paddling hard to nowhere. “Well, he hasn’t given up yet,” she admitted.
“And he won’t!” Mama promised. She took a break from her mending and searched each of their tanned faces. “Here’s the real secret to succeeding in life: You get knocked down, you get back up. You get knocked down again, you get back up. It’s not getting knocked down that’s the problem. Life does that to everyone. It’s when you don’t get back up that you’re in trouble.” She looked down at the struggling toddler and smiled proudly. “Fortunately, Brian refuses to stay down.”
As if on cue, Brian looked up, grinned and then set his sights on the stuffed puppy again. Legs kicking, arms stroking—he continued to give it everything he had.
“That’s Mama’s boy,” she told him. “You just keep pushing, Brian. You’ll get there.”
The summer went by in a flash and it was perfect. After each breakfast, Heidi, Steph and Ross left the cottage and played all day, taking their lunch in the backyard and washing it down with the water from the garden hose. They didn’t even consider going in until the streetlight came on. They climbed trees and fell from branches. They suffered their cuts and bruises, cried for as long as Mama allowed it, and then headed back out into the wild to eat worms that squirmed out of mud pies. They made friends with kids up the street and were allowed to walk to their houses, as long as they “stayed together.” And, as a treat, they sometimes shared a cola, drinking from the same green glass bottle and learning how to share as they did.
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