THIS IS A BLACKCURRANT PRESS PUBLICATION

I HATE MUSCULAR DYSTROPHY – LOVING A CHILD WITH A LIFE-ALTERING DISEASE

Written by Star Bobatoon, Esq.Edited by Karen E. MillerPhotos by Mark Gomez www.theFotos.com

ISBN # 978-0-9817111-8-8

All rights reserved. Published in the United States of America by Blackcurrant Press. All rights reserved. No part ofthis publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means,electronic, mechanical, photocopying, recording, or otherwise, without the prior written permission of BlackcurrantPress Company.

Printed in the United States of AmericaMay 2011

FIRST EDITION

www.blackcurrantpress.com

To HurricaneI am blessed to have you as my inspiration.

�ank you for choosing me.

To every parent and person loving a child with a life-altering disease.

Cane in the Sycamores

TABLE OF CONTENTS

PrologueIntroduction: I Hate Muscular Dystrophy!

Chapter 1: A Life-Defining Moment

Chapter 2: Learning to Dance in the Rain

Chapter 3: The Star Principle

Chapter 4: S is for . . . Start Anew

Chapter 5: T is for . . . Take Time to Live, Laugh, and Talk About It

Chapter 6: A is for . . . Accept the Tears and Ask for Help

Chapter 7: R is for . . . Replenish Your Spirit

Chapter 8: Finding Purpose in the Eye of the Storm

Chapter 9: Resolve to Make a Difference

Chapter 10: The Journey Continues

Epilogue: You Can Hold on to My Underwear

IInnttrroodduuccttiioonn::I Hate Muscular DystropHy!What we fight, we strengthen; what we resist, persists.

– Eckhart Tolle (author, spiritual psychologist)

“I hate muscular dystrophy!” This exclamation has great meaning for me. It had great significance

when I cried with my son that day on the Interstate. The statement also has greatsignificance for many of the participants who attend the “I Hate MuscularDystrophy” workshops I lead for parents and caregivers of children with musculardystrophy.

The statement also resonates for many parents and relatives of childrenwith other life-altering diseases. Those who are raising these unique children, orwho are close to them, understand the statement and emphatically agree they toohate Down Syndrome, Autism, Cerebral Palsy, or whatever the name of theaffliction that is altering their lives. This statement sheds a thin beam of lightinto that dark secret place they try to keep to themselves; the place they try to keephidden. I know that place well.

When I said, “I hate muscular dystrophy” aloud that day in the parking lot,it marked the beginning of a shift, an awakening for me. It was the first time Iacknowledged how I really felt about the disease and its impact on my son andthe rest of my family. It was the first time I admitted to myself how angry andhurt I really was. I had spent years hiding from my true feelings, ignoring theimpact this disease had and was continuing to have on my life and my everydayemotions. That was the day I began to heal the soft, fragile part of my brokenheart.

Often times, when adversity hits, we immediately put on our strong faceor our mask. Many of you know that mask well; in fact, you’re probably wearingthat mask right now. Quite frankly, sometimes the mask of strength is absolutelynecessary. Sometimes wearing that mask and stifling our true emotions is theonly way we can get through the day, the hour, or even the moment. That mask

I HATE MUSCULAR DYSTROPHY – Loving a Child with a Life-Altering Disease

�

WRI�EN BY STAR BOBATOON, ESQ.

�

is necessary so that we can do the things that need to be done. I don’t deny thenecessity of the mask; the mask has its place. But after a while the questionbecomes, “Are you controlling it or is it controlling you?”

In his book A New Earth: Awakening Your Life’s Purpose, Eckhart Tolle– a German-born writer and teacher whose writings in the areas of spiritualityand psychology have touched millions – says, “What we fight, we strengthen;what we resist, persists.” The very thing we try to ignore, hide, or push away isthe very thing that stays with us the longest and affects us most deeply. It not onlystays with us, it impacts our thoughts and feelings, dictating our actions andreactions. The closer negative emotions come to the surface, the more we fightthem, and the more we fight them, the stronger they become.

Why do we fight so desperately to keep our emotions at bay? We fear ifwe let our emotions show for even just a moment, they may take control of us,and we will lose our minds and perhaps our hearts. We all know that uncontrolledemotions can run rampant and lead us astray. We can imagine the man who fliesoff the handle at the slightest provocation, or the woman who completely fallsapart and can’t function. And so we resist – believing that if we let our emotionsout, we risk losing control and becoming one of those irrational, ineffectivepeople. We, therefore, wall up our emotions and call ourselves functioning. Wemay well be functioning, but at what cost?

Our feelings and emotions have us so tightly wound up at times it seemsas if there is no space to breathe. It’s a constant battle, a draining and tiring battle,which, if left unchecked, can become dangerous to our health. As Tolle explains,when we refuse to face the harsh negative emotions we have inside, we don’t getrid of them – a remnant of pain always remains. It remains and grows larger.With every unexpressed emotion that we feel, the pain inside grows larger andmore taxing on our immune system and our spirit.

One way to relieve that pressure is to simply acknowledge the negativeemotions that exist. We can take a moment to squarely face what we sometimesfeel toward the uninvited diseases that show up in our lives; and, by doing so, webegin the journey toward healing.

Your Turn

Do you hate Muscular Dystrophy? Or Autism or Cerebral Palsy or (insertthe disease of your choice here)? If so, I invite you to take a moment to expressyour feelings. Go ahead and say it out loud.

You probably said it very softly and very politely, so as not to offendanyone. Did the way you say it accurately express how you really feel? Probablynot. I invite you to say it again, this time with feeling. Say it with the full emotionit creates in you. When we acknowledge what hurts, when we face what frightensus, we loosen the hold it has on us and break free – if only just a little bit. So, Iinvite you to say it now with feeling, “I Hate (your disease or frustration here)!”

How do you feel?This is one of the first exercises I do in my workshops. Afterwards, the

participants tell me they feel lighter. They feel as though a tremendous weighthas been lifted from their shoulders and their hearts just by saying the words outloud, just by acknowledging their true feelings and frustrations. The rest of theworkshop has a deeper impact because the healing has begun.

While it is important for us to acknowledge our negative feelings, Icertainly don’t suggest we remain in that negative space for long. We don’t wantthe unexpressed, stifled emotions to hold us back. However, we also don’t wantthe unbridled expression of raw emotion to render us useless and ineffectiveeither. We have too much to do. The objective is to acknowledge how we feel,how we really feel, so the emotion will no longer hold us hostage. Now thatwe’ve acknowledged some of the uncomfortable emotions, we can begin to freelyexplore the full spectrum of emotions we have left.

I Hate Muscular Dystrophy: Loving a Child with a Life-Altering Diseaseis partly the story of how muscular dystrophy came into my life, how I have dealtwith it and continue to deal with it, and the impact it has had and continues to haveon my life and my family. In addition, this book details specific strategies that Ihave discovered and used, not only to manage my existence with DMD but tocreate a life of peace, joy and happiness for myself and my children. It isdesigned to be a resource to help parents manage the emotional and personal

I HATE MUSCULAR DYSTROPHY – Loving a Child with a Life-Altering Disease

�

impact of caring for a child with a life-altering illness. But, while it is directedat parents, the principles discussed can apply to anyone caring for or loving aperson in this situation.

Regardless of where you are in the healing process or what yourconnection to a child with life-altering illness might be, it is my wish that thisbook bring you peace, comfort, and hope.

DisclaimerBefore you read any further, I need to give a disclaimer. Actually, it is more of a

request for leeway. In this book, I will share some of the very raw and very real feelingsI have experienced in my years of living with Duchenne Muscular Dystrophy. Noteverything you will read will be politically correct or even rational – a lot of what I felt, andsometimes still feel, is not rational or politically correct. It is, however, what I feel and howI felt in the moment.

I am certain some of you reading this book know exactly what I am talking about,and will understand — all too well — how I feel and felt. For those who do not quiteunderstand but would like to, I ask that in reading this book you create a safe place for thecandid expression of my emotional journey. I hope and pray that through this book you,too, will find a safe place for the expression of your own emotional journey.

WRI�EN BY STAR BOBATOON, ESQ.

�

Hurricane after muscle biopsy - 4.5 years old

I HATE MUSCULAR DYSTROPHY – Loving a Child with a Life-Altering Disease

�

CChhaapptteerr 11:: a lIfe-DefInIng MoMent

Life can change in an instant, and it usually does. – Star Bobatoon, Esq.

Life is filled with certain defining moments, moments we rememberforever, moments when something monumental happens. We know ourlives are, from that moment on, forever altered. Have you ever had a

moment like that? A moment where you knew beyond a shadow of a doubt lifewould never be the same? You did not know exactly how it would change, butit was clear it would? Whether the issue you’re dealing with is MuscularDystrophy or Autism or another life-altering disease, I imagine you have had atleast one moment that stands out, that stands still — a life-defining moment.Here is one of my life defining moments.

It is May 5, 2001. I am home from a long day of classesand studying for final exams in my last year of law school. Dinneris over, the kitchen is clean, and our almost 5-year-old son,Hurricane, is asleep in his room. I am sitting on the couch withmy husband, Mark, his arms wrapped around me while we watchsomething mindless on TV. With the schedule I have been keeping,I can’t remember the last time we just relaxed and held each other.It feels nice.

When a commercial comes on Mark raises the remote andputs the TV on mute. “I spoke to Dr. Tangent today,” he saysevenly. My body tenses, I am still and quiet.

Mark and I have spent the last five months takingHurricane to countless doctors and specialists trying to find outwhy he runs slower than the other kids, why he can’t climb the

WRI�EN BY STAR BOBATOON, ESQ.

�

I HATE MUSCULAR DYSTROPHY – Loving a Child with a Life-Altering Disease

��

stairs without holding on, and why he falls so often. Four weeksago Hurricane had a muscle biopsy to determine if he hasmuscular dystrophy, a degenerative muscular disorder that causesthe muscles to grow weaker as a child grows older. It is anaggressive, debilitating disease for which there is yet no knowncure. Dr. Tangent, a pediatric neurologist at UCLA, told us shewould come to our house with the results if there was anything tobe concerned about.

Not knowing if Mark is waiting for some response fromme, I remain frozen, unable to speak or move. In a deafeninglyloud moment of silence, I feel him tighten his arms around me.

My husband is my ultimate protector. For the 13 years wehave been together, he has kept me grounded. While I amemotional and excitable, he is calm and measured. While I amjumping off the side of a building without preparation in pursuitof a new idea or a dream, he is busy tying a rope to my ankle so Idon’t hurt myself. My calm, grounded husband tightens his armsaround me and says . . .

“Dr. Tangent’s coming over tomorrow morning at 9 a.m.” Immediately, I begin thrashing about trying to break free.

I want to run, run away from him, run away from this moment. Atthe same time I am screaming, “No, No. I don’t want her to comehere. I don’t want her in my house. I won’t let her in.” I amscreaming and crying and trying with all my might to pull awayfrom him. Mark holds on to me and will not let me go.

Eventually, I stop struggling, I stop screaming, and I stopcursing. Did I mention I was cursing? When Mark finallyreleases me, I turn to look into his eyes. His arms are strongaround me; he holds me and will not let me go, but his eyes… Ihave looked into Mark’s eyes countless times before. When I needstrength, when I need comfort, I look into Mark’s eyes and thatassurance, that comfort, is always there. Now I only see pain and

WRI�EN BY STAR BOBATOON, ESQ.

��

sorrow. The pain in his eyes and the tears streaming down his faceconfirm it is bad news.

“Do you want to talk about it?” he asks. An oppressive heaviness fills my chest and constricts my

throat. I find myself suddenly thrust into a foreign emotional placewhere the pain and fear are so large, so overpowering I cannotspeak. I collapse into his chest knowing at that moment my lifewould never be the same.That was a life-defining moment for me. I can say without a doubt my

life has not been the same, nor has it been what I had imagined it would be afterthat day, that moment. Since that moment my life has been far more challenging,more painful, more interesting, and more joyous than I could have imagined.

Joyous? Yes, there has been a great deal of joy in my life, even thoughfor a while it seemed I would never be able to smile again, much less laugh. Overtime, however, my joy came. My joy came because I wanted it to come.

Philosopher Kahlil Gibran, in the famed book, The Prophet, writes “Thedeeper that sorrow carves into your being the more joy you can contain.”Initially, the intensity of my sorrow created a deep cavern of emptiness in myheart. I could have chosen to fill that cavern with bitterness, resentment, andfear. Many people do just that when hit with tremendous sorrow. I admit I hadmy share of those harsh emotions. Eventually, however, I chose joy. I did notwant to continue to live in fear and sorrow. I wanted my son to know joy,laughter, and love. The only way to make that happen was to live in joy myself.Joy is always available; we just need to first choose to open our hearts to it, andsecond, look for all the ways it is available to us. I chose to fill that empty spacewith joy, with as much joy as I could. My family has a better life because of thatchoice.

Life is filled with certain defining moments when you know your life willnever be the same. However, it is not the moment itself that defines your life. Itis what you choose to do, how you choose to respond in the moments, days,weeks, and years that follow, that truly define your life and who you are. Whatwill you choose?

Sharing Your Defining Moment

In a workshop environment, with parents and caregivers who have justrecently received the diagnosis and with those who have spent some time livingwith the diagnosis, we share this moment early on. The act of sharing this veryintimate moment is extremely powerful and liberating. It unites everyone in theroom in a special way because we can all relate; we all have our own similar butdifferent stories.

In sharing our stories, we create a safe place in which to look at andacknowledge the emotions we would otherwise run from — the emotions thathaunt us. When we share our stories, get them out of our minds, talk about them,cry about them, we take a significant step in loosening the hold those emotionshave over us. As we loosen the restrictive hold of those emotions, they no longerhold us hostage. We begin to heal as we open our hearts to access the joyavailable to us.

What was your defining moment? Do you recall the exact moment whenyou realized your life would not be the same? Now, I understand how hard thatmoment might have been to live through the first time, and you may not want togo back to that defining moment, much less share it with others. These definingmoments can be so raw, so emotional, and so private that some people even hidethem from themselves. However, the ability to pinpoint that moment and shareit is a way to start healing. We need to heal ourselves so that we can better enjoyour lives and be better caregivers for our children. Would you be willing youshare your defining moment?

I HATE MUSCULAR DYSTROPHY – Loving a Child with a Life-Altering Disease

��

EXERCISE: Find someone with whom you can share that defining moment as it relates toDMD or whatever illness with which you are dealing. Make sure it is a person you cantrust. Before you begin sharing, let them know you don’t need them to make things betterfor you. Ask them to simply say, “Thank you for sharing with me. It showed a lot ofcourage.” That is all you need from them.

What we are aiming for is an opportunity for you to express your feelings and havesomeone hear you out. Many times we don’t share the hard emotions with our friends andfamily because we don’t want to burden them. Other times, our friends and loved onesshy away from having those touchy conversations, because they have absolutely no ideawhat to say if you cry or start expressing deep, dark emotions. Having this script takesthe pressure off both sides. Of course, if you want to share more or continue theconversation, that’s just fine.

In the event you find it too hard to actually speak extemporaneously about your definingmoment, you can write it out and then give it to your friend to read or simply read it aloudyourself. Use the method in which you feel most comfortable; the important thing is toshare the moment. If you choose to write it, I invite you to include all the words, thoughtsand emotions you can recall, recognizing and acknowledging all the feelings your definingmoment holds for you.

If you don’t have anyone with whom to share this moment, or if you are reluctant to shareit with anyone you know, I invite you to share that moment with me. I invite you to shareyour moment with me, even if you do have others with whom to share. I would simply loveto connect with you. You can send your written life-defining moments to me atStar@ihatemd.com.

Here’s another suggestion: Start a journal. Journaling is a method for exploring yourthoughts and feelings regarding the events in your life. Getting your thoughts out of yourhead and putting them down in writing will lead you to insights you might not see otherwise.It can help you clarify your thoughts, release your emotions in a safe place, and evenmanage stress. There are exercises throughout this book designed to guide you towardyour true feelings and lead you toward a life of joy and happiness. Some of the questionsI ask may prompt more reflection, and it would be great to have them all in one place. Whoknows – you may have a book in you – if not to share with the world, perhaps to share withyour family, or just for your own peace of mind. To get the most out of this journey, I inviteyou to start a journal.

WRI�EN BY STAR BOBATOON, ESQ.

��

ABOUT THE AUTHOR

Star Bobatoon is an accomplished attorney, dynamic trainer and award-winning speaker.

Her high-energy and engaging style makes a lasting impact on her audiences and clients. Star’sbackground in employment litigation and diversity counseling allows her to connect with diverseaudiences, further enhancing her effectiveness as a speaker, trainer and executive coach.

Star has trained and shared the stage both nationally and internationally with world-renownedmotivational icon Les Brown. As former Program Manager for Les Brown’s speaker trainingprogram, Star created programs, facilitated training and coached new speakers.

Star trains and speaks on many legal topics including diversity, discrimination and harassment andFamily Medical Leave Act. Her passion, however, is empowering and inspiring adults and youngpeople in the areas of leadership, personal development and communication. Star encouragesher audiences and clients to embrace their inner light and become the STARs they were born tobe.

Star is especially committed to organizations that support parents with special kids. She is avolunteer, speaker and workshop leader for informal support groups and national organizationsincluding Parent Project Muscular Dystrophy (PPMD), Muscular Dystrophy Association (MDA)and the Make-A-Wish Foundation.

Her greatest accomplishment is being the proud parent of “two of the most beautiful children in thehistory of children.” Her youngest is her daughter Xanthia and her eldest is her son Hurricane.Hurricane has Duchenne Muscular Dystrophy and is the inspiration for this book.

For more information about Star Bobatoon visit www.StarBobatoon.com