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The Way Life Is

by Rick Johnson

170 pages; quality trade paperback (softcover); catalogue #03-2191; ISBN 1-4120-1814-5; US$20.00, C$23.00, EUR16.50, £11.50

Is a young couple's having two daughters born with different life-threatening genetic disorders some kind of divine design, or just bad luck? A tranquil, ordered life becomes "hell on wheels" while they look for the answer.

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about the book      about the author      table of contents and excerpt      catalogue info

About the Book Being in love and full of anticipation of a great life does not shield young couples from unfair and unexpected challenges and trauma. This book is not an elaborate "how-to" or "self-help" manual for when the going gets rough. It's just a true story about a couple that continued to put one foot in front of the other when they would rather have given up; it's about love and faith and standing fast against adversity. The Way Life Is takes readers into the home of a young couple trying to accommodate their own needs, desires and demons while coping with the special needs of their children: Sara, born with a rare and life threatening disability known as Prader-Willi Syndrome; Gina, who arrived needing open-heart surgery in order to survive; and Andrew, an active and exceptionally healthy little boy stuck in the middle. Readers' Comments "...as I read it I am struck by what a wonderful personal account it is, not only of your family's experiences, but the part of the story that is universal and inspiring, every couple's struggle with love and adversity. May it bless many, many families around the world!" Joanne Klassen, author of Transformative Writing "Congratulations on what I think is a truly incredible book... it is all beautifully written and the introduction is especially nicely done... the type that grabs a reader right away and makes them want to read more. I think you are going to find that your book really connects with people and will not only comfort, but also inspire them." Brenda Fehr, Entertainment Editor, Transcontinental Media Inc.

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About the Author Rick Johnson is an award-winning writer, editor and columnist. His family, which is his passion, and his journey with them, has required much of him. He responds with action deeply rooted in principle, tucking away all that he learns along the way, gleaning insight, truth and inspiration. If you need a fresh perspective that links practical action with principled reflection, Rick is someone who will guide you to ask yourself the questions that provide clarity and direction. This process is second nature to him and is evident in all of his work. Contact the author: rick48@mts.net

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Table of Contents and excerpt

Contents
Introduction
1
Peace and Innocence
3
The Unexpected
9
Roller-coaster Rides
22
Synchronicity and Communication
35
Joy and Appreciation
45
Tender Mercies
53
Fascination and Fear
65
Panic
77
Chaos and Surrender
88
Friends and Frightful Places
97
Focus and Clarity
108
Blessings
117
Weariness and Water Torture
127
Dilemma and Desperation
139
Resilience
151
Déjô vu...Again
156
Reflection
166

Introduction

While on a recent driving holiday in western Manitoba, Patty and I made a brief stop at Newdale, the small town where she grew up. As we rounded the corner of her street, we noticed the front steps of the old house were gone and the windows were all completely out. This was the house she had called home until she moved into Winnipeg in 1969, six months after she finished high school, and where her parents, Wilf and Rene Stevenson, had continued to live until 1985. It was sad to see, but apparently the current owners were tearing down the house.

With no one around, we stopped and walked through the old ghost. The furnace had been torn from the basement and the floors bared down to the boards, except near the front door, where a bit of the old red, patterned carpet remained; a tattered remnant of what Patty's father had meticulously laid in the early 70s.

The untold hours of love and care put into that house, the periodic painting, the wall papering, the nurturing, were now all for naught - just vague memories among a few of us who happened to have passed the same way. Entering into the dining room, I could see Patty and her mother setting the table, and smell the ghosts of Christmas and Thanksgiving turkeys past. I could hear the laughter and feel the tears of years of house guests and family life, now gone, now struck silent by Father Time. Only the scent of musty old floor boards remained, interrupted by the occasional present smell of lilacs wafting through the gaping holes where windows once were, and where Rene’s lovingly chosen curtains once hung. The experience gave us pause to reflect on the miles and miles we had traveled in our many years together, on all the houses and house guests we had known ourselves. What, of all the things we had toiled over for all those years would live beyond us? What had enough meaning to withstand the test of time and the wrecker's ball? It was not the houses or their carpets, nor the cars, furniture, big screen TVs, computers, clothes or cell phones we had thought, at various times, to be so important, and for which we had bartered great portions of our lives in towns and jobs we didn't always like, that dominated our reminiscences on the two-hour drive home. It was the times we had teetered at the very edge of survival that demanded revisiting, particularly the mayhem and milestones, the unexpected gifts and guests that our special children brought to our lives.

This little book, this revisiting, shares the experience of some of those times. It is my hope that through the sharing, others, perhaps also faced with the crazy-making nature of Prader-Willi Syndrome, the terror of infant heart surgery, the vacuum of depression, or with just trying to keep it all together in the face of unexpected twists in the road of life, will find some opportunity for growth, some small source of strength or connection, some clarity beyond the crisis of the day.

Rick Johnson

dilemma and desperation

The completely untenable situation at home came to a head in the summer of 1991, which we look back on as "The Summer From Hell". It became abundantly clear to Patty and I that we had to do something before the whole family flew apart.

We finally decided to put Sara into the care of the Winnipeg Children's Home in the early fall of that year, just a month before her 15th birthday. She lived in a small group home with just two other children and 24-hour-per day house parents.

From Patty's diary:

We are putting Sara into the care of the Winnipeg Children's Home. I hope it's the right thing to do because my guilt is through the roof again, but we don't know what else to do. This summer has been pure hell on all of us.

My Mom died in July. Since her stroke many years ago, her health has been precarious, to say the least, but she got progressively worse since last Christmas. She was in and out of hospital, all the while living in Brandon, a drive of two to three hours each way from Stonewall. We went out there as often as we could, about every six weeks. She was getting more and more mixed up, and one morning phoned me in desperation to "come over" to help her find her slippers.

I got a lot of calls like that and home care there couldn't handle all her needs. With my siblings all two provinces away, I was the one she relied on. Then came a series of calls from my uncle in Brandon, chastising me for not "doing more" and questioning my love for my mother.

I became totally exasperated and guilt ridden. With the home front, I was totally exhausted. Talk about being stuck between a rock and a hard place... Mom went into hospital in April where a series of small strokes further weakened her. She never returned to her apartment. My sister, Lori, and I planned the funeral after she died July 6.

Sara sat beside me at Mom's funeral and in the middle of it, she dropped a copy of the service on the floor. Of course, she wanted to "get it" right now!!! No amount of shhhushhhing or promises that we'd get it as soon as the service was over would do, it had to be gotten right NOW. Her louder and louder protests disturbed a lot of people, not to mention embarrassing me!!! She finally crawled under someone's feet in the middle of my mother's solemn funeral, and me utterly helpless to explain to any relatives or anyone why my daughter would disrupt a funeral in such a way. Maybe if she were three or four, but Sara is 14.

Then, on the way back to Stonewall after the funeral, she discovered some lady had given Andrew a rose off Mom's coffin so he could dry it and have a nice keepsake of his Grandma's funeral. But horror of horrors, Sara didn't get one, too! So, most of the two-hour drive home, we had a war going on in the back seat over the rose. It was Andrew's rose. It was supposed to be meaningful. That should have been all there was to it, but nooooo, Sara didn't have any rose from Grandma's coffin and she wasn't about to give up till Andrew gave her his.

We could not make her understand that her not getting a rose while Andrew did, did not mean her Grandma, or anyone else, loved him more than they loved her. There was absolutely no way we were going to ask, or make Andrew give it up, so the war waged on the whole two hours driving down the highway and on into the night at home.

It was only resolved when the rose got whisked away and pressed into a heavy book, with a whispered explanation to Andrew of where it was, and an outright lie to Sara that it had been thrown out and now "neither" of them had one. Only then did she give it up and, of course, only after we'd all practically dropped from exhaustion from the futility of the whole prolonged and torturous episode. Not to mention that I just buried my mother and hadn't exactly had a chance to feel much of anything except anger, frustration, and increasing desperation. It puts a whole new meaning to the phrase "taking the bloom off the rose"!!! That rose will always be bittersweet to me, with its double set of memories. The whole summer has been taken up with major tantrums from Sara over endless trivial issues. One episode went five hours straight. And one barely ends when we're into another. She has lost her cool completely.

Even our respite time isn't working anymore because she is always terrified the rest of us will do something without her, and she is right. But, to take her along with us every time almost guarantees a major tantrum over something, then the point of the excursion is, more often than not, totally lost.

Getting her to agree to go with the respite worker has become a huge ordeal. It's usually simpler to just stay home. A half day battle to get her out the door so we can enjoy a couple of hours with our other two kids just isn't worth it any more. The worst of it is, we are being extra hard on Andrew so that he doesn't say anything, look at her, or do anything that she might interpret as picking on her in any way.

Gina is only seven so the fights are mostly with Andrew, or one of us. And now, Andrew has started to react more and more strongly. He is well on his own way to becoming one angry little boy. So, we have been having a lot of meetings with The Winnipeg Children's Home trying to arrange a placement for Sara. The fact that I have been having panic attacks, which hospitalized me twice overnight, escalates the need to place her. We did get a small break from her last month when she went to camp for a week and we drove to northwestern Ontario for a few days. But, even that got screwed up because Rick got sick on the last day and when we got home, he went into hospital for two weeks with pneumonia. All the stress has obviously taken its toll on his health, too.

While he was in hospital, David, my oldest brother, called from Edmonton to tell us my niece Nicole was seriously ill in hospital with pneumonia as well, and wasn't expected to live. The types of pneumonia weren't the same, but the parallel between her illness and Rick's condition didn't exactly make me any calmer! Thank God Rick is OK now.

Nicole was only 20 when she died. Last week, the day after her funeral, we finally got word from the Children's Home that they have a place for Sara. Moving day is set for Sept. 12.

Sara was about to go into Grade 9 when we presented her with the idea of moving out. We explained it in the context of the awful things that had gone on at school the previous year, hoping that would make it more acceptable to her. After all, we had constantly bickered with the administration over how they were not dealing with her needs appropriately and, clearly, she had been miserable, being the brunt of bullying and ridicule on a daily basis. After the summer from hell, we truly did not want another school year like the last had been.

"Sara," I told her, "We have got to get you away from that school and those terrible girls that drive you crazy every day. Maybe you should go to school in Winnipeg."

But, as much as we wanted her to be in a better environment and, hopefully, happier, we wanted the same for ourselves and for Andrew and Gina. We had to do something to save all of us from total meltdown. But how do you tell a 14-year-old girl, going on 10, that she is tearing up the family and has to move out?

That summer, I came to appreciate the anguish faced by Robert Latimer, a Saskatchewan farmer who, seeing no alternative way to relieve her suffering, put his severely disabled daughter to death.

Causing a human life to end is never a good thing to do, just as living a life of love, devotion and compassion is always a good thing to do, however difficult. But, what happens when you are about to burst because your love, devotion and compassion are absolutely ineffective in alleviating the pain and suffering of your loved ones? The persistent challenges with Sara, on top of a background of worry about Gina and her survival, along with Patty's recurring anxiety and depression, trying to be a good father to Andrew, professional and financial challenges, all accumulated to the point where I had moments when I contemplated taking Sara and driving the two of us headlong into highway traffic.

There is no anguish so wrenching as that of having to stand by while someone you love, especially a child, endures a horrific situation for which there seems to be no solution. With Prader-Willi Syndrome, we were continually thwarted. There was never an answer, never a solution with more than fleeting effectiveness. The desire to do something, anything, to "fix" it, at times, totally consumed me, filling me with a rage in which I think I would have been capable of anything.

To "do what is just, to show constant love, and to live in humble fellowship with our God," all at the same time, can present mere mortals with the most difficult and contradictory situations – situations in which any course of action, for someone involved, might well be extremely uncomfortable, to say the least. We put our first-born out of our home and into the care of strangers, though it broke our hearts to do so.

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Catalogue Information

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