Posted by: Jody Glynn Patrick | 08/23/2009

A Ronald McDonald House memory: The job with “faith” benefits

“Goodbye, Jody,” chirped the frail, chipmunk-cheeked child.

“Hello, Buddy,” I replied playfully, tapping Toby’s shoulder as he passed over the threshold of the Chicago Ronald McDonald House. The ten-year-old boy and his mother were leaving for the outpatient clinic at nearby Children’s Memorial Hospital. He was to about to begin a six-hour chemotherapy drip that would weaken him to the point of needing a wheel chair for the return trip.

He pirouetted and tilted his head quizzically. His head wasn’t so much bald now, as sparsely feathered with fuzz the consistency of a baby bird’s first down. Toby squinted comically: “Why do you always say ‘hello’ instead of ‘goodbye’?” he asked. 

I reached out and poked his tiny pug nose with genuine fondness. “Because you’re coming back here after treatment,” I reminded. “We’ll see a lot of each other this week. No goodbyes for us yet, Buddy.”

“See ya later, Alligator,” he challenged, backing out.

“Not if I see you first, Crocodile,” I quipped.

“It’s ‘After while, Crocodile,'” he whined, but it was a fake whine. I knew the many tones of Toby’s voice. Because of the levels of support drugs added to his chemotherapy regime, his voice was unnaturally high pitched, sometimes sounding as if he’d sucked helium. I had learned to actively listen to him. The steroids also left him with a round, moon face, and a voracious appetite. I found his crab apple cheeks particularly endearing.

As Toby and his mother passed, he offered a rare grin, confirming he really was having a good day… so far.

There are some jobs you never should claim to have had, even though you were legitimately hired to do them and paid a fair wage for honest labor. I’m speaking to the job that, from the beginning, you never really “had” — because it had you. There’s a difference.

The day I was hired as the Executive Director of the Chicago Ronald McDonald House (where I would not only work, but also live 24/7 onsite with my family for the next few years), I listened to the board chairman’s warnings about “appropriate mental boundaries.” However, boundaries are necessarily elastic in the service of sick children. Soon I wasn’t doing the job for the [relatively low] pay or the glory or title, but rather for the privilege of being part of something bigger than myself. Really bigger than me on many days.

If you ever start to feel that way about your job, I’m telling you straight out, the job has you. The tail will wag the dog.

In my own defense, no one really prepared me for the inevitability of falling in love with sick children and wanting to hold onto them, sometimes long after medical science had lost its grip. If I had been better warned about that, would I perhaps have taken a pass; walked away from the job offer? No. Somehow I knew that it would become one of the most extraordinary experiences of my life. And I was right.

Watching Toby and his mother begin the short walk to the hospital that warm, bright morning in 1980, I secretly hoped never to say goodbye to them. The Chicago House’s first priority was lodging outpatient pediatric oncology patients and their parents, thereby avoiding an expensive and traumatic hospitalization for the children. Those who came from far away might spend seven consecutive days with us as often as every three weeks; sometimes spanning a couple of years. The best goodbyes were reserved for the time when a child went into remission and (hopefully) left the house for good. Too many of the children I had loved had died; Toby’s prognosis was not very optimistic, so with no way of knowing which circumstance would separate us, I superstitiously tried to hold “goodbye” at bay.

A blending of lives

My family’s lives blended with all the lives of all the families we met, some of them crossing the globe to get the best medical care available for their child. Some came for a night; others settled in for years. On average, we’d have about eight core families identified as repeat “House families” threaded through the 18 nightly check-ins, and though the bookings were constantly in flux, the relationships held solid. That was especially true with regard to Toby and his mother. We often ate dinner with them in the communal kitchen and, when Toby felt up to it, he played games with my children and listened to my stories.

When Toby came back from the clinic that one particular day, he was exhausted and ill. His mother said they were in the last of a series of experimental chemotherapy treatments. No one could predict if it would reverse the symptoms or make them worse. Toby qualified for the therapy because his leukemia had been deemed terminal. Short of a miracle, there was little hope to be found and anything would be tried.

At Thanksgiving, we made arrangements to transport Toby from his hospital bed to the Ronald McDonald House for dinner with his family and friends. He sat in his wheelchair, too exhausted to play, too sick to eat. We talked about better days, when he’d been able to participate in House-sponsored events. Toby whispered with halting breaths, wanting to talk about his trip to Walt Disney World, and the night at the Arie Crown theater when Sandy Duncan flew over his head in the play Peter Pan, and his summer adventures at the One Step At A Time Camp.

His face flushed with fever as he talked about attending a Chicago White Sox game, dedicated to him by announcer Harry Carey. Toby had two years worth of stories to review, two years of involvements with the House and its activities — and me. Two years worth of “hello’s”. That day, it seemed evident it was growing nearer to the time to say “goodbye”.

The final summons to the hospital

It was a cold snowy day in December. Though the icy sidewalks were slippery, my steps had been weighted down with dread, responding to the summons from Toby’s mother.

Watching him doze in the hospital bed, I tried to memorize every feature on his face. When he roused from morphine-induced dreams, his mother mopped perspiration from his face and I helped him takes small sips of apple juice. Both of us sought ways to comfort the child and draw his attention away from the constant pain. Every movement was agony for Toby, and his moans wrenched our hearts.

He said he wanted to speak to me alone. He was insistent. His mother stood up, but there was a sorrowful look on her face as she agreed to leave the room for a few minutes.

When she stepped out into the hallway, Toby looked directly into my eyes. “Promise something,” he whispered. I offered a silent selfish prayer that he wouldn’t die before his mother returned, and assured him I’d do anything he asked. “Take care of my mom,” he said with great difficulty. “She’s gonna miss me terrible.” I kissed his forehead lightly and crossed my heart with exaggerated movements. His stare never wavered, and I took his small hand in mine and kissed it gently, too. He wasn’t yet finished with his request: “Don’t say goodbye to me,” he croaked. “‘Promise. Cause I’ll see you again in God’s house. No goodbyes for us ever, right, Buddy?”

“Right,” I managed.

Moments later, his mother returned to sit by his side again and tucked his other cold little hand into hers. He mouthed the words I’m so tired and sorry.

“You have nothing to be sorry for,” his mother sobbed, fresh tears flowing down her cheeks. “I love you so much, baby. You’ve been the best son God could ever give a mother.”

He couldn’t manage a smile, certainly couldn’t move more than an inch, but his eyes reached for her and kissed her face just the same. He said to her then, “Say it now,” and closed those beautiful eyes. By prearranged agreement, she began softly, “The Lord is my Shepherd…”, covering him lightly with a sheet – and also with the faith that also would bring him some measure of comfort.

He didn’t live through the entire recitation of the 23rd Psalm.

“Hello, Buddy,” I wept.

Toby’s legacy

These words are painful to write, even all these years later, and you might wonder why I brought you into the room, too. The reason is because regardless how painful the reality was, I can’t imagine the anguish it would have brought to us all, without the faith that child held tightly to. The faith and grace that Toby shared with us allowed us to give him our best, too.

I tried to pass along Toby’s gift of simple faith in my work at the Ronald McDonald House, and afterward, when I delivered death notifications to families in a new role of police crisis interventionist. Toby’s inspiration was tapped every time I ministered to bereaved families, helping them say goodbye to a beloved shell.

What kind of job pays those kinds of benefits? What kind of job gives you faith – instead of sucking it out of you?

If you are a clinician who works with children, you know what I mean. The job doesn’t end with a child’s death; in many ways, the real work then begins for you, too, to cope with it.

If you are a bereaved parent, know that there are clinicians out there to help you carry the load who will be touched by your ordeal, and who will truly care about you and your family. If you need that extra help, I hope you can find the means to get it.

And a final thought. Your child’s death meant something profound to everyone involved, no matter how marginal their role was. I hope you are able or willing to post your comments about your child to add to our dialogue here, and please feel welcomed to return soon.

Jody.

This article is copyrighted by the author. All Rights Reserved. No part of this article may be reprinted without permission of the author. ©Copyright 2009: Glynn Patrick & Associates


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