Saving Lee, Finding Grace: A Mother's Journey

Saving Lee,

FINDING GRACE

A Mother’s Journey

ANNE MARIE HAMMING

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©2012 Anne Marie Hamming. All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

Published by AuthorHouse 10/29/2012

ISBN: 978-1-4772-6646-5 (sc)

ISBN: 978-1-4772-6647-2 (hc)

ISBN: 978-1-4772-6648-9 (e)

Library of Congress Control Number: 2012916315

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibilityfor them.

Contents

Introduction      THE DAY I MET LEE

Chapter One      CONCEPTION AND MISCONCEPTIONS

Chapter 2      HE’LL GROW OUT OF IT, RIGHT?

Chapter 3      MOMMY’S COLLAPSE

Chapter 4      THE MYSTERIOUS BEAUTY OF CHICKEN, RICE, AND PEAS

Chapter 5      DIABETES AND MORE DEAD ENDS

Chapter 6      ANSWERS AT LAST

Chapter 7      LEE’S SECOND BIRTH

Chapter 8      BIG TEDDY

Chapter 9      WE’RE LOSING HIM

Chapter 10      MY YEAR WITHOUT KATIE

Chapter 11      AWKWARD FIRST STEPS INTO THE WORLD

Chapter 12      AN END AND A BEGINNING

Afterword      A MIRACLE FOR ME

Resources

To Katie and Lee,

Mom and Dad,

and Beba

Introduction

THE DAY I MET LEE

Lee, three days old, naps before leaving the hospital to go home in January 2004.

I heard my son before I saw him.

Whereas my daughter had had the faint bleat of a newborn lamb at her birth, my son took his first breath and filled the surgical room with a bellow. It surprised all of us, even the doctor. As the nurses checked my baby boy’s vital signs and cleaned him under a bright light, he fought and yelped with the instinctive fire of self-protection.

Don’t ever stop making noise, sweet Lee Arthur Marentette, I silently cheered. Don’t ever lose yourfire.

Then I got to hold him.

My boy had the nearly bald head and deeply lined face of an ancient man. His face—wow, that face showed character. The lines foretold of great wisdom; I just knew it as I marveled at him and dreamed. Hisoverly large head was hooked to an undersized, curled-up body that was nothing but bones and floppy skin, but he was lovely and perfect. All ten tiny fingers and ten little toes were beautiful. His delicate ears were the right proportion to his features, and they were tucked tightly against his head. I giggled at his dusting of reddish hair. The color implied sweetness within him that would disarm people and open their hearts to him immediately.

Oh, little man, I cried, for that is exactly what his face looked like.

Next, I whispered a prayer of gratitude for this beautiful, healthy-looking child. No Down syndrome. No cleft palette. No heart or lung problems that forced him to be whisked away for urgent care before I could hold him. There was no outward sign that life would deal out any challenges—none at all. He was nothing but a lifetime of potential in my arms.

I went limp with relief. I had worried for four months about this baby who had barely moved in the womb. The doctor had advised me not to fret. If I could feel my baby move at least once a day, he was fine, the doctor said. But telling an expectant mother not to worry is like telling the pope not to pray. I wanted proof. One look at my baby boy finally gave me the evidence I needed to relax. I could start dreaming about life with a healthy child. All would be rosy. He would be a top student without effort, and he would hold his own on the athletic field. He would be popular, maybe a drummer in a band and the girls’ favorite. He would grow into a kind, respected man. Not a superstar, but certainly an upstanding, warmhearted citizen in a medium-sized town somewhere in the future. He didn’t have to be president, not even a senator. Just the mayor for life, that would do, I whimsically dreamed.

It was irresistible and totally natural to dream with five pounds of possibility in my arms. I was holding the awe-inspiring mystery of a new life. I needed that encounter with pure hope to experience complete freedom from fear. I needed that moment to dream, lest the weight of life’s inevitable challenges keep me from dreaming at all. I needed to imagine that the next eighteen years would be effortless, for I would have been crushed if I had known that this was a child I was largely unprepared to raise, that this was the child who would push me to the point of breaking.

I was about to learn what many parents eventually know. For once we are home with our babies, it is only a matter of time before fear and heartbreak arise. They always do, even if it takes years. And it’s not just parents. It happens when our greatest hopes are dashed or when we realize achieving a dream isn’t all we bargained for. This book is for those who know that heartbreak. This book is a reassuring story for the mother who fears she will crack with exhaustion if her baby wakes crying one more night or if her autistic child has one more tantrum. This book is a warm blanket for the parent who is numb from leaving her preschooler at day care for nine, ten, or eleven hours for a job she once loved but now only tolerates because she has to pay the bills. This book is for the professional who never dreamed that having it all—a demanding career and a family—could stretch her to the brink of misery and failure. This book is for the father who knows his child needs therapy or counseling but cannot afford it or get time away from work to attend it. This book is for the parent who drops into bed exhausted and weighed down with the guilt that, yet again, he didn’t find time to do exercises recommended by the child’s therapist or teacher.

This book is for the parents who fear their tenderhearted children will become the prey of bullies in a world that can be overly harsh for kids who are too wiggly, too fat, too skinny, too black, too white, too pretty, too ugly, too loud, too quiet, too smart, too not-smart, too ordinary, too different, too clumsy, too sweet, or too trusting. This book is for those who doubt that it is safe to bring a child into the world.

This book also is for all the parents who don’t get to dream at their children’s births because a problem is clear right away through birth defect or deliveries gone awry. These are the parents whose dashed dreams are there for everyone to see with one look at the child.

Last, this book is for anyone who has honestly questioned if having children really is so great if it can turn a parent’s life completely upside down.

May my experiences inspire you and help you feel understood. I hope you find one passage to share with someone who cares about you because it could have been written about your life. I hope this book helps you see your own strength and courage as you carry a huge load and make the best decisions you can under immense pressure. Most important, I hope this book will stand the test of time for showing how our minds can move from viewing our greatest challenges as problems to viewing them as opportunities to grow in awareness and appreciation of the richness of life. We are not the scripts we write in our heads of how we think our lives ought to go. When things don’t go as planned, we are not our disappointments—not by a long shot. We are far more remarkable than that, particularly when we meet our challenges and disappointments with love.

In my case, my challenging child pushed me to write a completely new script. The script now includes ways to find joy in the unexpected. My challenging child revealed the paradox that the smallest bit of progress is reason to celebrate; he made me get comfortable with things that once terrified me. He showed me that my vulnerability was my strength. He showed me that the greatest acts in life are the most simple, like breathing, when they come from the heart. My child showed me that I was indeed vulnerable and that I did have a breaking point, which was humbling. But after I learned that I could be humble, I learned that I could stand firm amid crisis and accept that happiness is not all about pursuing goals. In my case, happiness is tearing up the script and starting over. Happiness is walking in my own shoes and cherishing every step.

I do not wish to pick an argument with fans of philosopher Friedrich Nietzsche, who wrote, That which does not kill us makes us stronger. That is not always the case. Sometimes the things that don’t kill us leave us maimed and hurting for years; sometimes they leave us with bitterness and resentment.

From my experience, I simply offer this updated version: that which does not kill us reveals strength we do not realize we possess, and only love compels us to use it.

Chapter One

CONCEPTION AND MISCONCEPTIONS

Katie, my firstborn, was so marvelous,

I couldn’t stop at one child.

On a cloudy Saturday morning in March 2009, I put my car in reverse and began to back out of my driveway. I stopped halfway down to look in the back at my son Lee, who was strapped in his car seat next to Big Teddy, his stuffed bear who was the same height as him.

I lingered to take in my blond-haired, blue-eyed five-year-old. I was fully aware that this tiny, pale boy who had failed to thrive might never return to our home. I was fully aware that he and his older sister might never see one another again.

I also knew I might return to that very spot with him cured, healthy, and whole. In my mind, I looked even further into the future to the day I might catch my breath at the sight of the beautiful young man who had defied the odds. I planted the vision in my mind of that day ten ormore years in the future when I would stand face-to-face with him and look up to him because he was taller than me.

We’ll be back, I murmured to Lee, to the empty house in front of me, and to my heart. I took my foot off the brake and let the car roll backward again.

Moments earlier, I had sent my seven-year-old daughter on a 120-mile trip north to live with my parents in my hometown, McBain, Michigan, for an unknown number of months. My son and I were heading nearly 350 miles south to Cincinnati, where he was scheduled to receive a full bone marrow transplant to cure him of a rare, deadly autoimmune condition that I had unknowingly passed to him through a mutated gene.

I still shake my head when I look back on all Lee and I would experience in the months that would follow. I still feel disbelief that I, of all mothers, would face this journey. After all, I had been ambivalent about becoming a mother in the first place, and I had come so incredibly close to not having this boy.

My life with Lee began when I awoke wet and cold the day of his birth. I awoke at four thirty that January morning in 2004, and I knew immediately that my water had broken, even though it was three weeks before my due date. Heavy with fatigue, I heaved myself from my side to my back and looked wide-eyed at the ceiling.

I’m having a baby … today, I said.

I spoke to the ceiling because my husband was sleeping at the other end of the house in the spare bedroom. Five nights earlier, he had called me at work to say he was leaving. He would stay until a few weeks after the baby was born, but that was it, he said. Strangely, I still wanted him with me when Lee was born. I wanted him to look at our son and realize he was being a fool to walk away. But how would I make it through labor with a man who had turned on me? And on only four hours of sleep.

It was hard to imagine I was bringing a second baby into that kind of marriage; it was tough to believe I was in that kind of marriage at all.

Most of my life before Lee had been quite uneventful, and while I can’t say I was always happy, I wasn’t miserable. As a newspaper journalist, I could almost step back from my distress and feel I was watching another woman’s life—not mine—because it didn’t add up. I was a smart, well-educated, hardworking woman with a career. I had pluck. And I came from a peaceful family where people didn’t argue. I was a sincere woman who valued sticking with a marriage for life though it all. I thought my own hard work would get me through damn near any challenge, and I honestly thought my background and choices made me immune to being left alone with two babies. Boy, was I wrong.

As I look back, I can see that Lee’s very existence was based on wishful thinking disguised as hope. It was the wishful thinking that my roller-coaster marriage would turn into a slow, scenic train ride through the park, and we would raise two beautiful children in a stable home. I simply refused to accept that it wasn’t going to work out that way, so I ignored many signs to the contrary. And as skeptical as I was that the conventional path of two kids, a marriage, and a nice home was as satisfying as people made it out to be, deep down it had become what I really wanted.

At the time Lee was conceived, I was working full-time on the night desk at the Kalamazoo Gazette, and my husband was the fire chief in a small town near Grand Rapids, Michigan. We already had a daughter, Katie. Not quite two years old, Katie’s deep brown eyes and dimples melted me beyond all reason. The first time I looked at her, I said, Oh, we have to have another one of these. She’s marvelous.

Five years before Katie, I married a man who seemed sensitive, funny, bright, and intuitive even though, by his own admission, he was not good looking or successful with long-term relationships. His candor was refreshing. I remember our early days as a time of laughter. When we married, he was the thirty-four-year-old new deputy chief in a growing fire department, while I was a reporter and an adjunct writing instructor at the local community college. Our plan was to move eventually to a suburb of a large metropolitan area—him a fire chief and me a journalist. If we had a child, we would have the means to hire people to do housecleaning, laundry, yard work, and maybe even the grocery shopping. Because I was twenty-five, I was in no rush to have a child. Parenthood at that time seemed like an event in the far distant future just before I was too old to have a baby. Still, I was pretty sure I wanted one eventually, possibly two, but no more. We agreed that we would not take extra measures to have a baby if we were unable to conceive, and we probably wouldn’t even adopt. But if it happened, we would embrace parenthood and give it our best.

This willingness to become a parent represented a gradual shift in my thinking. In my teens and early twenties, I never had a burning desire to be a mother. I was never one who dreamed of having a family. I was never one who felt her life would be incomplete without a child. And I was never one who dreamed that the perfect life was a spouse, a nice house, and two kids. That dream certainly did not drive my career or life-partner decisions. When I was dating at Calvin College, the small Christian college I attended, I was repelled by men who told me they wanted to settle down and have a family. The very thought brought on panic. I felt like I couldn’t breathe. As a teenager, I avoided babysitting jobs, and I was relieved when I outgrew the tedious church nursery duty. In college, the caring professions of nursing and teaching sounded, well, dull. They sounded too much like mothering. And many of the women who were studying in those fields chose those fields because they were conducive to juggling work and a family. I just didn’t feel like I fit in with them. I felt a bit like an oddball because I was beginning to grasp how pervasive the standard life plan of marriage and kids was in my part of the world, and I felt like one of few who questioned it.

Toward the end of college, one of my best friends was taken aback when I said I could envision a life without children. At that time, I was deep into English literature studies. I realized how writing or some other meaningful work could fill up one’s life in a rewarding way. The work would be the gift that made the world a better place.

Then I laughed.

What if I devote my life to writing and totally suck? Then I would wish I had a child. I better go that route, I said, and we both burst out laughing.

I suspect I inherited some of my ambivalence about motherhood from my own mother. Growing up, I loved my mother dearly, but I wished she were happier. I wanted my mother to laugh as much with me as she did during her infrequent lunches with her best friend. I wanted my mother to show her playful side a bit more and her dutiful side a lot less. It bothered me that she was doing a job she seemed to value greatly, but she still didn’t seem very satisfied by it.

I was intensely loyal to my stay-at-home mother who valued her four children in a highly protective way. When I was small, I could count on her to be an anchor of