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"Third Time Lucky is raw emotion. It will make you laugh and make you cry. An honest, compelling, sometimes painful, but mostly uplifting story that reflects the shared reality of families all over the world."
- Connie Laurin-Bowie, Executive Director, Inclusion International
"This book is an eye-opener ... and an important contribution to the on-going discussion about how society supports and includes people with a disability and their families."
- Ken Pike, Disability and Human Rights Advocate
"Mrs. George, we have a problem. You have a very sick baby. He may not live the day."
No parent should ever hear these words, and yet they were only the beginning. Born with multiple disabilities, Ben was just hours old and forced to fight for his life; it hardly seemed fair. His parents were told only of a bleak future for their son and were then left on their own to deal with all of his problems. Third Time Lucky: How Ben shows us the way is their story of learning to cope with never-ending emotional and physical exhaustion, a task so daunting no one really understood just how close they were to falling apart. Most days, survival was all they could hope for.
Despite being told Ben might never walk, or talk, or go to school, Mike and Jan were determined to unleash the smart, social, loving boy who was trapped deep inside a spastic body. They saw him as a real person, not a clinical statistic. Through their pain, they developed a oneness few couples ever come to know. Graced with angels throughout their journey, they never gave up, navigating mountains of obstacles while battling public indifference.
Third Time Lucky: How Ben shows us the way reinforces the miracle and fragility of human life and is an inspiration to those who have been told, "There's nothing anyone can do to help you!"
|Product dimensions:||6.00(w) x 9.00(h) x 0.94(d)|
Read an Excerpt
Third Time LUCKYHOW BEN SHOWS US THE WAY
By Michael George
iUniverse, Inc.Copyright © 2012 Michael George
All right reserved.
Chapter One"MRS. GEORGE, WE HAVE A PROBLEM!"
Confident. Complacent. Perhaps a little of both. I'd even go so far as to so say "experienced" as THE day finally arrives. That's what's in the air today. I had witnessed two previous births up close, though I like to call them two previous miracles. Each came with no surprises and the imminent arrival of baby number three has become very predictable. It is a scheduled birth, for 10 a.m. on Wednesday, June 29, a caesarean-section like the others. It is almost too easy, "... you will have a baby today." Yes, today is going to be a good day.
It wasn't always this way. We weren't really excited about having another child. The sleepless nights, the diapers, the middle-of-the-night feedings: we thought all of that was behind us. We needed some sleep, having been deprived of it for two years. Not only that, but how could we afford to raise three children under four years of age?
Our life was so perfect with just Conor and Tori. Two young children, one son and one daughter, 15 months apart, and two young professionals, Jan and I. A millionaire's family, people remarked. Jan blamed herself, she blamed me, we blamed others around us for not doing something to prevent any more pregnancies, and I battled with my religious faith. It was such a contradiction. In the end, we did nothing but argue about it. We did nothing because we had little confidence that the confidentiality of any preventive measure would be guaranteed. It's a small town. People talk. Each time we argued, it proved self-defeating. And, of course, it was pointless. We were having another child.
It was very different when Jan was first pregnant with Conor. I was very much on edge with both anxiety and anticipation, barely 25 years old, just a kid, and just finishing graduate school in the far-off Canadian prairie lands. I remember my fears being washed away following that first ultrasound. Those images were so life-like: I could see Conor moving very slowly, lifting his hand and putting his finger to his cheek, as if he had an itch that had to be scratched. For several months after, a mark remained on his cheek and I'm sure he did it that day. During that eye-opening experience, I realized that I was watching a living being, growing, moving, developing. It made it all seem so real, and I counted all of his fingers and toes. Kind of silly when you think about it, and really, quite shallow of me.
The clock inches ever so close to the top of the hour and I am feeling very prepared. The pregnancy had been uneventful (easy for me to say, of course). All tests over the past nine months have revealed a so-called "healthy, normal fetus." The other two deliveries had been fine. Jan takes care of herself as she always does. It is all so familiar to us. Was that experience? ... complacency? ... confidence?
* * *
I am in my greens by 9:45 a.m. and wait, impatiently, for them to call me. At least 20 minutes pass and I start pacing. In an agitated tone, I ask a nurse how much longer. It is close to 10:20 a.m. before they allow me into the O/R.
Dr. Losier, a tall, gentle man, is well underway with his team of nurses when I sit down on a cold, metal stool next to Jan. I ask her why the delay and she nervously tells me that she had passed out and they had to bring her around. She had had that fainting feeling just before Tori's birth, too.
We wait what seems like an hour until, at 10:29 a.m., Dr. Losier calls out that it is a boy. Jan is able to hold him almost immediately and the anaesthesiologist asks us his name.
"Benjamin," we say in unison.
Ben's newborn skin is quite slimy and bloody—a normal sight.
I watch while they clean and weigh him (6lbs 6oz—a little more than Tori but a lot smaller than Conor), and score him Apgars of 8 and 9. While they are weighing him, one of the nurses points to a little rash on his tummy. Another nurse shrugs it off as nothing important.
A short time later, the three of us are in the recovery room. We start making the necessary phone calls to Ben's grandparents to announce his arrival. My parents, as expected, are not impressed by the name we have chosen, believing that all male grandchildren should include their grandfather's name. Why can't they just be happy for us?
It is close to noon when a nurse comes to get Ben and mentions that she is going to stop into the Unit to get his tummy rash checked. I tell Jan that I will meet her back in her room and leave for the cafeteria to get some lunch.
Proud and self-assured, and with sandwich and cola in hand, I stop at the nursery to peek in at Ben. Oddly, he isn't there. Something doesn't feel right. About 10 minutes later, while I am sitting in Jan's hospital room waiting for her, a nurse pops her head in and says, "They want to see you in the Unit."
Who are "they" and why do they want to see me? Where is the Unit?
The "something-is-not-right" feeling is starting to grow and the closer I get to the Unit the faster my heart beats. My face is flushed and my head is beginning to pound, thinking that there's something wrong with Jan. As I arrive at the doors to the Unit, Jan is wheeled out of the adjacent recovery room with a troubled and puzzled look on her face. I ask her what is happening and she says that they won't tell her anything.
* * *
We wait at the back of the Unit as one of the neonatologists approaches us. Dr. Dunphy is a compact woman with tight, curly hair and very round glasses. I fixate on her glasses that sit so perfectly on her short nose. Her face is expressionless so I know it is serious, whatever it is. Ignoring me, Dr. Dunphy turns to Jan and calmly says, "Mrs. George. We have a problem." Her calmness seems ice cold and is making it hard for me to breathe.
And then what seems like a run-on of words ...
"You have a very sick baby. He has an enlarged liver, an enlarged spleen, his head is too small, and his platelets are dangerously low. He may not live the day!"
Then a barrage of questions.
"Did you ever have rubella?"
"Were you sick during the pregnancy?"
"Did you have any high fevers?" ...
No. No. No. What kind of monster is she? How can we remember anything after being told that our son may not live the day? There must be some mistake. We had just held him less than an hour before and everything was fine. We thought, "You must have the wrong baby!"
With my heart coming through my chest, I find myself speechless, motionless, and scared, all at the same time. What is happening to us? Someone must have screwed up. Why weren't these problems discovered before now? The stress is building, the questions are mounting, my worst nightmare is a reality.
After that first tortuous conversation, we are permitted to see Ben. That's exactly what it feels like, that somehow we have been granted some special dispensation to see our own child. He is lying in an incubator, appearing almost lifeless, with wires and monitors surrounding him. The little rash that was discovered on his tummy, the very reason why he was brought to the Unit, has consumed his whole body. A purple-like skin covers him from head to toe (petichiae, it is called), an indication of his low platelets. As we stare at his transformed body, Dr. Dunphy informs us that Ben's platelet count is in the low 30s compared to a normal value of at least 300. She also points out that his tummy is, indeed, a little large, an indication of the enlarged liver and spleen. I just want to hold him. I feel so helpless.
I am not grasping much of what she is saying. I still can't believe that Ben could be so sick so quickly. It has been only a few hours. Her diagnosis must be wrong. Maybe we'll have a few rough days but that's all. I can't imagine anything else.
After we provide Dr. Dunphy with little in the way of answers, she instructs Jan (I appear to be a non-entity) rather matter-of-factly,
"You may go back to your room," and calmly walks away.
* * *
Sitting in the starkness of Jan's hospital room, I am in disbelief. It is as if someone has decided that my life as I knew it is over and that I will have this incredible burden to carry for the rest of my life. The scars of this day will never heal. The more I think about it the more I ask why we are so deserving of this. I am starting to feel deep anger and resentment towards everyone. Babies are born every day with no complications. What did we do wrong?
My mind is consumed, focused on our venture to this year's Christmas party, and getting away for the weekend, how this is now in danger. But that is six months away. I am troubled about why this seems so important to me now. I'm trying to block it out, to toss it aside, but it won't go away. I'm beginning to feel that our freedom has been taken way—taken away without our permission. Either Ben will be under our care for the rest of our lives, and I mean round-the-clock-care, or he will die and we will be grieving forever.
No matter what happens, I have just experienced what seems like a permanent loss of happiness from my life. Like some massive, impenetrable door has just slammed shut in front of me, the kind you'd find in a medieval castle.
It's all over.
The fun we had with each other, with Conor and Tori, will never return. I am completely useless in helping Jan deal with anything that has just happened. I have no idea what to say, what to do. After so pleasantly announcing (to some) Ben's arrival such a short time ago, I have to call everyone and explain the turn of events. I don't know what to say, what to do. Things are becoming blurry. Things don't seem real.
* * *
So many questions
By chance, I spot the stocky frame of our paediatrician, Dr. Campbell, walking down the hall. Despite the summer heat, he is wearing a wool sweater; he always wears sweaters but his choice today seems out of place. My whole life is out of place today.
I dash towards him realizing that he is completely unaware of the situation. He is someone I trust unconditionally, someone who can cut through the clutter and solve problems. Someone who is undeniably reliable. And maybe even today, a shoulder to cry on. I relay to him the facts as I know them and ask him about CMV, one of the potential causes, we were told, of Ben's problems. Cytomegalovirus derives its name from its appearance under a microscope, where the cells (cyto) are significantly large (megalo). It's a common virus that often goes undetected and to most people is harmless. "So, if it's so common and so harmless, how is it that Ben is so affected?", I ask Dr. Campbell. His fifty-year-old rugged face curls up with worry. I know he knows something and is not giving me any answers right now. His unwavering dedication to both his profession and the well-being of his patients is instantly brought to the surface, and he assures me that he will find out what it all means.
My ambush is rather unfair but I need to talk to someone. I need answers. I need someone to tell me everything will work out. A small dose of panic is creeping in. I am beginning to realize that uncertainty is really tough to deal with.
A short time later, my father, a physician for 40 years, arrives on the floor. I can't remember whether or not I asked him to come. My head is such a scrambled mess right now. I begin asking him about CMV since Dr. Campbell was short on answers. In his serious, teacher-like tone which comes out when he really wants to make a point, he says that he knows little about the effects it can have on newborns but understands it is often a complication with transplant patients who are taking immuno-suppressants, as well as with AIDS patients. I pause, not knowing what that sentence has to do with Ben.
No one has any answers for us. The fear of him dying is growing larger by the minute.
* * *
Before June 29, I really didn't know sadness. I thought I did. I thought I had done all the right things and didn't expect anything less than a perfect baby. But today, I'm being told that it doesn't matter what I had done, thought I'd done, expected would happen. Today, my world has been destroyed.
Never in my life have I experienced feelings of such intensity. They are overwhelming me, consuming me. I want to run but there's nowhere to run to. There is no one to turn to for comfort, for answers, for anything. We are quickly seeing that everyone we talk to knows very little about anything to do with Ben. As the hours pass, we begin feeling more and more isolated, more and more alone, more and more like outcasts. No one knows quite what to say to us.
In six years of marriage and the six years I knew Jan before that, I have never seen her this way. I have never felt this way. Sitting at her bedside while she dozes, I am swept away to the summer of our high school graduation. The memory is so vivid right now, I can taste it. That humid summer evening. A perfect setting. No one else around. Just the two of us. Swaying on the park swings. Talking. Planning our future. Where we would live. Picturing our lives together forever. Always in love. Always happy, though not sure how we would do it since Jan would be going to Sackville to college and I to Halifax. A two-hour train ride apart. Short but still apart. That night, it didn't matter. Nothing could dampen the moment.
Something special was being born then. A deep sense of peace and happiness, unlike any other time. Something we both knew no one could take away. A connection, a bond that would keep us together forever, that we would thirst for every day, that would never allow us to be apart for very long, that would intertwine our thoughts and emotions so completely that we always would know what the other was thinking. A oneness that few people ever come to know.
Watching the rising and falling of her chest, I feel that that once-indestructible bond is now crumbling around me. I didn't think that was possible. There was nothing stronger, I thought. For this first time I begin to believe that something could actually tear us apart. It is making every cell in my body ache, like an itch that can never be scratched. The more I dwell on this the more it drives me crazy, making me jumpy, spinning me out of control.
What is happening to us?
Chapter TwoTHE FIRST (WORST) WEEK
They have no beginning or ending, these first few days; they just happen, all pretty much a blur, a constant run-on of events. We are told that there would be no confirmed diagnosis for several days but it is one of three culprits: cytomegalovirus, which was already suggested, rubella, or toxoplasmosis. Talking in this language makes me ill. The birth of your child is supposed to be a joyous event, a time for celebration, unlike any other. The hours and days that follow are a time when you begin to form and nurture that important bond with your child, one that will last a lifetime. Instead, the only thing that will last a lifetime are those haunting words of Dr. Dunphy. They keep playing over and over in my head.
"... You have a very sick baby! He may not live the day! ..."
"... You have a very sick baby! He may not live the day! ..."
By Day 3, I give in to Conor's relentless requests to see his brother. My attempts to shelter his 3-year-old mind from this awful place are no match for his burning desire to welcome Ben to our family. We cautiously enter the rear of the neonatal unit, through the same doors that Jan and I had entered for the first time a few days ago. Conor searches the aisles with his energetic eyes looking for Ben until we lead him to the incubator where his brother is lying, peacefully. His eyes widen as he examines the complex of wires and monitors that surround Ben, perking his ears at their unfriendly tones, their beeps and warbles. We aren't able to hold Ben but that doesn't stop Conor from letting him know that his big brother has been to see him.
He reaches into a side pocket of his shorts that he has willingly donned to combat the summer heat and pulls out a yellow miniature toy truck. He's certain that Ben will love these toys as much as he does, as much as I did at his age. We talk to the nurse about leaving it with Ben; no problem, we're told. And without hesitation, Conor places his little hand inside Ben's incubator and gently parks the truck next to his sleeping head. The haze that has enveloped my head for the past three days is suddenly lifted.
A new bond is forming, a new friendship has begun.
Some early tests
I just want someone to tell me that Ben will be all right, that maybe he'll have some difficulties in the first few months but "... if you do these things, follow this list, it will all work out fine ..." I can't seem to find this person.
Excerpted from Third Time LUCKY by Michael George Copyright © 2012 by Michael George. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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