One Day We’Ll Dance Again: A Family’S Journey Through Illness and Grief

Copyright © 2013 by Angela Brown Ware

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ISBN: 978-1-4759-5307-7 (sc)

ISBN: 978-1-4759-5309-1 (hc)

ISBN: 978-1-4759-5308-4 (e)

Library of Congress Control Number: 2012918329

iUniverse rev. date: 7/30/2013

Contents

Introduction: You May Be The Momma….

Chapter 1: In Another Time

Chapter 2: Early Summer

Chapter 3: Late Summer

Chapter 4: There Once Was Dancing and Laughter

Chapter 5: Just A Normal Family

Chapter 6: Crazy Momma

Chapter 7: Just A Normal Kid

Chapter 8: Letters to Eric

Chapter 9: Doing What is Right

Chapter 10: A New Year

Chapter 11: Spring Again

Chapter 12: October Second

Eric’s Obituary

Suggestions for Parents

How You Can Help a Family Coping with a Seriously Ill Child

To Bryce:

You are a wonderful son and a terrific brother. I pray that you know that even through the confusion of those years you were neither forgotten nor last on the list. Thank you for your patience, and thank you for the love you showed to all of us.

To Aaron:

Please know that we love you wholeheartedly. When you were foundering in a foul sea of grief, despair, and loneliness I jumped in without a moment’s hesitation to grab onto you and paddle incessantly, struggling to bring you to the peace of the shore. Your dad stood on that same shore, pulling us both in to shelter.

To My Sweet Dear Eric:

God gave us the honor of being your parents. For that we thank Him. Mommy and Daddy love you. Your intense spirit and fearless energy amazed us all. You are beautiful.

It is said that the little challenges in life prepare you for the big ones. We never know what strength we have until we face those challenges.

Introduction: You May Be The Momma….

Y ou may be The Momma, but you are not in control. One of my favorite phrases to use on my children was, I’m in charge here - I’m ‘The Momma’. I used to believe that. The Momma runs things. The Momma bestows hugs, makes dinner, reads stories, packs lunches, lays out clothes, gives baths, organizes trips, disciplines, and, in effect, rules her children’s world. The longer you have your children convinced of this, the higher and longer-lasting their awe is of you. Sometimes however, due to accident or illness, your child’s life is out of your control.

When your child is ill, his world is suddenly ruled by others. He is under the schedule and restriction of people he has never met. Your only job now is to attempt to calm and comfort him in an alien environment of medications, x-rays, treatments, and therapies. Sometimes you feel that you have no place here, but you do. It’s the same job you have at home: you are The Momma. You bathe, you feed, you rock, you sing, and you pray for your child just as you would do at home. You promise yourself that you won’t leave his side until he is out of this horrible place. You whisper to him how beautiful he is, how strong and brave he is, and how as soon as he gets better he will be home. And when he’s asleep, you cry.

Things are so arbitrary in this world. Time means nothing on a swing shift. You have no privacy. Strangers - doctors, nurses, technicians - intrude at all hours. Sometimes it’s a new set of faces every day. Friends and family visit when they can, but you still feel very much alone. These strange people terrify your child, and you cannot protect him from the touching, prodding, probing, and injecting. You watch helplessly and pray that you could take his place. His sad eyes watch you and question you, and you hear his unspoken questions: Why am I here? Why won’t you do anything? The guilt tears at your heart.

Was there something you could have done to prevent this? Something you didn’t do? Something he was exposed to? Something you ate when you were pregnant? Was it something he ate? Questions and doubt surround you, but all of the baby gates, outlet covers, padded furniture, and disinfectant in the world cannot protect your child every second of his life. He will put things in his mouth that he should not, jump off things he should not, forget to look both ways before crossing the street, and roller skate without his helmet. It is how he grows up. You cannot catch his colds for him, and you cannot always catch him when he falls. But oh, how you wish you could!

Once you thought that only some kind of an evil witch of a mother would restrain her own child during a medical procedure. It tears you apart to do it, but you must do it; you can’t just stand and watch. You force yourself to hide your tears, to sound hopeful, even cheerful. You don’t fool your baby one bit, but at least you’re there for him.

Afterwards, you hold him tight, murmuring, Mommy’s here, Mommy’s here. You pray that it somehow helps, and that he forgives you. Your heart breaks. You wonder how he could possibly still love you after you allowed something like this to happen to him. Remember that children do not carry the emotional baggage that adults carry. He still loves you because not only are you The Momma, you are his momma. You are there, and that is all that matters.

Daddy offers to stay with him, but it’s not the same. You have a visceral need to be there with him. When Baby wants Momma, he wants Momma - no one else. It’s sometimes both a joy and a curse. You could really use a breather, but just the thought of taking a break from this chaos twists your gut. You hesitate to use the restroom, take a shower, or get a drink of water for fear that he’ll wake up and find you gone. You promised him that you wouldn’t leave him, ever. All of the clothes you packed are soiled; they’ve been cried on, messed on, and vomited on, and you look like you lost a fistfight. Even the nurses tell you to go home and get some rest. They must be crazy to think you would even consider it.

Load up the guilt wagon even more; what about the children at home? They also deserve your attention. You hope that they understand why you aren’t there. You hope they know that if it were they that were here, you’d be there for them, too. What did they wear to school today? Did they remember to do their homework? Did they wear their heavy coats? Did someone put out the trash on Tuesday? What might be festering in the kitchen sink? When am I going to be able to go to work again? What has accumulated in the mailbox, and how are we going to handle it? You try to focus on what is absolutely necessary, because it’s the only way you’ll stay sane. Count on family and friends for help and support; swallow your pride and embarrassment and accept their help. Accept that things won’t always be done the way you would do them, but they will get done; don’t try to do it all alone.

You are The Momma. Along with the angels, you are his protector, his champion, his strength. That is why God put you in this place. Wipe his tears, keep praying, and do your best.

This is my diary. This diary represents the time I spent with my son, Eric, between early 2003 until October 2007, as well as our lives approximately 18 months beyond. It is as frank and direct as I can make it. There may be decisions my husband and I made on behalf of our child that you may not agree with, but whatever decisions we made were made with intense love and caring and with his well-being at heart. Whatever decisions we made are ones that we must live with. I have omitted intimate discussions between me and my husband. Names were changed, except for those of most family members.

I believe in God. I believe in Jesus Christ and that He gave His life so that we may be forgiven of our sins and that we may live again in Heaven. I believe in the Resurrection, and I believe that I will see those I love and have passed on again in Heaven. There are spirits that protect us and communicate with us if we are quiet enough and pay attention. I give all thanks and appreciation to God for strengthening me and holding me up during my weakest times, and placing those in my path to help me through the dark times.

Cancer is evil, indiscriminate, and unpredictable. Your baby can be two months, two, six, twelve, or twenty-two. Parents repeatedly run a gamut of emotions: fear, anger, guilt, jealousy, and rage. They hesitate to smile or laugh because that would mean letting down their guard. Laughter and smiles indicate a state of relaxation. We feel that to relax is to allow cancer to take a tighter grip, get the upper hand in the tug-of-war between you and your child’s illness and possible death.

Don’t let go. Hold on tightly and follow your heart. Do what you feel is in the best interests of your child. Above all, let them know how much they are loved and cherished.

Thank you to the doctors and staff of Children’s Hospital National Medical Center of Washington, DC, The Johns Hopkins Hospital in Baltimore, Maryland, and the National Institutes of Health in Bethesda, Maryland for your hard work and dedication to every child they encounter. Thank you also to Philip F. Carpenter for giving me the much-needed jump-start to completing my work, and for his encouragement and assistance.

Angela

Chapter 1: In Another Time

I n another time our family was whole. In another time we had the usual issues that most families have, which now in retrospect seem so insignificant, so petty, so unimportant. In another time we lived in a three-bedroom townhouse in Mitchellville, Maryland, a few miles outside of Washington, DC, and a hard walk to the Washington Redskins football stadium.

My husband, Byron (Jeff) and I lived close to our families. Jeff’s dad (Popi), a retired pharmacist, and his mom (Grammy), a retired teacher, lived less than 15 minutes from our home. His sister, Tanya, and brother, Stephen, also lived in the area.

My mom and dad each had their own homes; Dad (Pop-Pop) in Northeast Washington, DC, and Mom (Grandma) in Capitol Heights, Maryland, each less than 30 minutes away in opposite directions. My dad is retired and works part-time to keep himself busy. Mom is also retired and mostly homebound due to a myriad of complications from diabetes. My sister, Lisa (known to the boys as Aunt Nee-Nee), brother Steven (Uncle Fuzzy) and I coordinated our schedules to run errands and care for her. This was our life before we realized the fluidity and unpredictability of happiness.

There were five of us. I worked in downtown Washington, DC as a legal secretary for a large law firm. Jeff worked closer to home as a television producer for Prince George’s County Public Schools. Bryce, age 8, was our eldest son. He was an outgoing, friendly child with my fair complexion and a shock of dark brown, curly hair. While not much taller than the twins, he took his position as oldest brother seriously. Eric and Aaron were 6 year old identical twins with features and darker skin similar to their father with stocky builds and endless energy.

Five can make a circle. A circle is strong and unbreakable. Five can make a pentagon. A pentagon is regal and distinctive. Now there are four of us. Four is so foreign to us. Four makes a square. A square is plain and predictable. Once Eric was here; now he’s not.

Our family’s ordeal began the Thursday before Palm Sunday of 2003. My mind relives the days and there I see the signs much earlier: the bruises, the stumbling, and the odd, pigeon-toed walk. We – me, my husband, and our family - just didn’t put everything together until it didn’t matter anymore. It seemed to begin with something so simple, yet so complex. Our lives changed completely the night that Eric fell down the stairs.

Everyone was sound asleep, except Eric. Maybe he decided that he needed a drink of water. He did what he had done a hundred times before; he walked down the hallway to the stairs to get to the kitchen. Instead of his usual quiet trip to the kitchen and back, I heard him cry out as he fell down the stairs. Jeff and I both heard him, and we leapt up out of our bed and scrambled to the bottom of the stairs where Eric lay, shaken and confused. We checked him for visible injuries, comforted him, got him some water, and sent him back to bed. He probably tripped on the many toys that were often scattered throughout the hallway and, at times – despite our admonishments - on the stairs. He looked okay - it was no big deal, right? Kids fall down the stairs every day.

Then, on Friday afternoon, Eric fell down the stairs.

On Friday night, Eric fell down the stairs.

On Saturday morning, Eric fell down the stairs.

Eric had walked those seventeen steps since he was eleven months old. Walking them at night was nothing to him; sometimes he didn’t even bother to turn on the light. A little warning nerve in the back of my head began to thump. Was he just going through a clumsy phase? Were his feet, like a puppy’s, too big for his body? Something wasn’t right.

Thump, thump, thump. I felt it in the back of my head. Shake it off, I thought. Don’t be a panicky mommy; he’s just going through a clumsy phase.

On Saturday afternoon I took the boys to the store. Eric stumbled and fell as we crossed the street. I helped him up and held his hand for a moment so that he could get his bearings. He seemed okay, so I let go of his hand. As we entered the store he ran into a metal shoplifting sensor so hard that the impact knocked him down. I scooped him up, brushed him off, took his hand again, and looked him in the eyes.

Eric, I asked, What’s wrong with you? Are you goofing with me?

Mom, he said, I say, ‘Go,’ but my legs don’t want to.

Thump, thump, thump. The thumping was harder in my head, more insistent now. Mental note: Call doctor on Monday. Talk to her about Eric’s clumsiness.

You may think, Good grief, lady! What’s it going to take to get him to a hospital - a telegram? Yes, a telegram would have helped immensely. During the everyday running around to get things done, we block out the things that threaten to snatch us from our routine:

Milk

Eggs

Detergent

Fix glasses

Get gas

Return videos

Pick up birthday present for party

Get kids to party

Et cetera, et cetera.

The signs seem obvious when you put them together, but try to piece together a puzzle without knowing what the puzzle is supposed to look like, or not even knowing that it is a puzzle at all. Someone casually hands you the pieces one at a time while the buzz of everyday life goes on – work, school, errands, homework, and chores. And oh - they neglect to mention - it is absolutely critical that this puzzle be completed now.

Thump, thump, thump.

Whenever I got close to Eric, he didn’t smell quite right. Every child has their scent, and his was way off. Eric didn’t smell like Eric. I am his mother, and I love him dearly. I know every aspect of my children because it is my job. I know their scent, their personality, their behavior, and moods. I know who won’t eat cheese, and who will eat anything smothered in gravy. I know their bowel schedules – I make it my business to know everything about them. I couldn’t identify what I smelled; it wasn’t a stink, it was just that Eric’s scent was not quite right. Since I had no basis upon which to compare, that knowledge made me curious and a little uncomfortable, but did not cause any alarm.

On Palm Sunday we cooked in the backyard on the grill after attending church. Eric’s clumsiness was momentarily forgotten as we enjoyed the day. Jeff manned the grill, and I set the table and handed out the food. Eric’s hands shook as he held his dinner plate. His hot dog rolled precariously toward one edge of the plate, then the other.

Eric, I asked, Are you goofing? Are you playing with me?

No, Mom, he said, I’m not goofing - I’m really not.

Thump, thump, thump. I felt instinctive, gut-twisting, God-given awareness that I believe we all possess, but I was afraid to trust it. You know what you know for a reason, and I knew that something was not right – dangerously so. This awareness is what has protected our babies for thousands of years, and I was terrified to act on it.

Jeff and I conferred after dinner. I’m calling the doctor first thing in the morning, I told Jeff. This just isn’t right. Do you think that it’s bad enough to take him to the emergency room tonight?

I don’t think so, Jeff said. What if it’s nothing?

What if it was actually nothing? What if we took Eric to the emergency room and it was nothing? Were we panicking over nothing? Should we bundle him up and take him to the emergency room, where we might wait hours to be seen by a doctor, only to be told that it truly was nothing? If it was nothing, we faced a $50 insurance co-payment. For nothing. We would frighten Eric for nothing. It was nothing, we decided. We would wait until Monday morning and I would make an appointment with his pediatrician. Jeff rolled up a few spare blankets and padded the bottom step just in case Eric took another tumble down the stairs.

Lisa and Steven, both police officers, had busy schedules, but we were very close. We spoke on the telephone several times a day. We telephone conference-called each other, exchanged news, teased each other, and conferenced Mom to give her a daily laugh. I did not share my concerns with them, and I do not know why I did not. Maybe I did not want to cause them undue concern. Maybe I was afraid that the anxiety I felt was justified in a way that I could not explain.

On Monday morning I called the pediatrician’s office to make an appointment for Eric. The receptionist asked about my concerns, and I told her that Eric kept falling down. She transferred me directly to the doctor. Drs. Frederick and Marilyn Corder, a husband and wife team,