I Hate Muscular Dystrophy Loving a Child with a Life Altering Disease

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Written by Star Bobatoon, Esq. Edited by Karen E. Miller Photos 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 of this 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 Blackcurrant Press Company.

Printed in the United States of America May 2011 FIRST EDITION


To Hurricane I am blessed to have you as my inspiration. Thank you for choosing me. To every parent and person loving a child with a life-altering disease.

Cane in the Sycamores


Introduction: I Hate Muscular Dystrophy! Chapter 1: Chapter 2: Chapter 3: Chapter 4: Chapter 5: Chapter 6: Chapter 7: Chapter 8: Chapter 9: Chapter 10: Epilogue:

A Life-Defining Moment

Learning to Dance in the Rain The Star Principle

S is for . . . Start Anew

T is for . . . Take Time to Live, Laugh, and Talk About It A is for . . . Accept the Tears and Ask for Help

R is for . . . Replenish Your Spirit

Finding Purpose in the Eye of the Storm Resolve to Make a Difference

The Journey Continues

You Can Hold on to My Underwear


Loving a Child with a Life-Altering Disease

Introduction: 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 great significance for many of the participants who attend the “I Hate Muscular Dystrophy” workshops I lead for parents and caregivers of children with muscular dystrophy. The statement also resonates for many parents and relatives of children with other life-altering diseases. Those who are raising these unique children, or who are close to them, understand the statement and emphatically agree they too hate Down Syndrome, Autism, Cerebral Palsy, or whatever the name of the affliction that is altering their lives. This statement sheds a thin beam of light into that dark secret place they try to keep to themselves; the place they try to keep hidden. 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 I acknowledged how I really felt about the disease and its impact on my son and the rest of my family. It was the first time I admitted to myself how angry and hurt I really was. I had spent years hiding from my true feelings, ignoring the impact this disease had and was continuing to have on my life and my everyday emotions. That was the day I began to heal the soft, fragile part of my broken heart. Often times, when adversity hits, we immediately put on our strong face or our mask. Many of you know that mask well; in fact, you’re probably wearing that mask right now. Quite frankly, sometimes the mask of strength is absolutely necessary. Sometimes wearing that mask and stifling our true emotions is the only way we can get through the day, the hour, or even the moment. That mask


is necessary so that we can do the things that need to be done. I don’t deny the necessity of the mask; the mask has its place. But after a while the question becomes, “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 spirituality and 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 is the very thing that stays with us the longest and affects us most deeply. It not only stays with us, it impacts our thoughts and feelings, dictating our actions and reactions. The closer negative emotions come to the surface, the more we fight them, and the more we fight them, the stronger they become. Why do we fight so desperately to keep our emotions at bay? We fear if we 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 uncontrolled emotions can run rampant and lead us astray. We can imagine the man who flies off the handle at the slightest provocation, or the woman who completely falls apart and can’t function. And so we resist – believing that if we let our emotions out, we risk losing control and becoming one of those irrational, ineffective people. We, therefore, wall up our emotions and call ourselves functioning. We may well be functioning, but at what cost? Our feelings and emotions have us so tightly wound up at times it seems as 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 get rid 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 and more taxing on our immune system and our spirit. One way to relieve that pressure is to simply acknowledge the negative emotions that exist. We can take a moment to squarely face what we sometimes feel toward the uninvited diseases that show up in our lives; and, by doing so, we begin the journey toward healing.


Your Turn

Loving a Child with a Life-Altering Disease

Do you hate Muscular Dystrophy? Or Autism or Cerebral Palsy or (insert the disease of your choice here)? If so, I invite you to take a moment to express your feelings. Go ahead and say it out loud. You probably said it very softly and very politely, so as not to offend anyone. Did the way you say it accurately express how you really feel? Probably not. I invite you to say it again, this time with feeling. Say it with the full emotion it creates in you. When we acknowledge what hurts, when we face what frightens us, we loosen the hold it has on us and break free – if only just a little bit. So, I invite 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 weight has been lifted from their shoulders and their hearts just by saying the words out loud, just by acknowledging their true feelings and frustrations. The rest of the workshop has a deeper impact because the healing has begun. While it is important for us to acknowledge our negative feelings, I certainly don’t suggest we remain in that negative space for long. We don’t want the unexpressed, stifled emotions to hold us back. However, we also don’t want the unbridled expression of raw emotion to render us useless and ineffective either. 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 that we’ve acknowledged some of the uncomfortable emotions, we can begin to freely explore the full spectrum of emotions we have left. I Hate Muscular Dystrophy: Loving a Child with a Life-Altering Disease is partly the story of how muscular dystrophy came into my life, how I have dealt with it and continue to deal with it, and the impact it has had and continues to have on my life and my family. In addition, this book details specific strategies that I have discovered and used, not only to manage my existence with DMD but to create a life of peace, joy and happiness for myself and my children. It is designed to be a resource to help parents manage the emotional and personal


impact of caring for a child with a life-altering illness. But, while it is directed at parents, the principles discussed can apply to anyone caring for or loving a person in this situation. Regardless of where you are in the healing process or what your connection to a child with life-altering illness might be, it is my wish that this book bring you peace, comfort, and hope.

Disclaimer Before 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 feelings I have experienced in my years of living with Duchenne Muscular Dystrophy. Not everything you will read will be politically correct or even rational – a lot of what I felt, and sometimes still feel, is not rational or politically correct. It is, however, what I feel and how I 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 quite understand but would like to, I ask that in reading this book you create a safe place for the candid 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.


Loving a Child with a Life-Altering Disease

Hurricane after muscle biopsy - 4.5 years old



Chapter 1: a lIfe-DefInIng MoMent Life can change in an instant, and it usually does. – Star Bobatoon, Esq.

ife is filled with certain defining moments, moments we remember forever, moments when something monumental happens. We know our lives 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 life would never be the same? You did not know exactly how it would change, but it was clear it would? Whether the issue you’re dealing with is Muscular Dystrophy or Autism or another life-altering disease, I imagine you have had at least 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 classes and studying for final exams in my last year of law school. Dinner is over, the kitchen is clean, and our almost 5-year-old son, Hurricane, is asleep in his room. I am sitting on the couch with my husband, Mark, his arms wrapped around me while we watch something 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 and puts the TV on mute. “I spoke to Dr. Tangent today,” he says evenly. My body tenses, I am still and quiet. Mark and I have spent the last five months taking Hurricane to countless doctors and specialists trying to find out why he runs slower than the other kids, why he can’t climb the


Loving a Child with a Life-Altering Disease

stairs without holding on, and why he falls so often. Four weeks ago Hurricane had a muscle biopsy to determine if he has muscular dystrophy, a degenerative muscular disorder that causes the muscles to grow weaker as a child grows older. It is an aggressive, debilitating disease for which there is yet no known cure. Dr. Tangent, a pediatric neurologist at UCLA, told us she would come to our house with the results if there was anything to be concerned about. Not knowing if Mark is waiting for some response from me, I remain frozen, unable to speak or move. In a deafeningly loud moment of silence, I feel him tighten his arms around me. My husband is my ultimate protector. For the 13 years we have been together, he has kept me grounded. While I am emotional and excitable, he is calm and measured. While I am jumping off the side of a building without preparation in pursuit of a new idea or a dream, he is busy tying a rope to my ankle so I don’t hurt myself. My calm, grounded husband tightens his arms around 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. At the same time I am screaming, “No, No. I don’t want her to come here. I don’t want her in my house. I won’t let her in.” I am screaming and crying and trying with all my might to pull away from him. Mark holds on to me and will not let me go. Eventually, I stop struggling, I stop screaming, and I stop cursing. Did I mention I was cursing? When Mark finally releases me, I turn to look into his eyes. His arms are strong around me; he holds me and will not let me go, but his eyes… I have looked into Mark’s eyes countless times before. When I need strength, when I need comfort, I look into Mark’s eyes and that assurance, that comfort, is always there. Now I only see pain and


sorrow. The pain in his eyes and the tears streaming down his face confirm 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 place where the pain and fear are so large, so overpowering I cannot speak. I collapse into his chest knowing at that moment my life would 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 after that 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 though for a while it seemed I would never be able to smile again, much less laugh. Over time, however, my joy came. My joy came because I wanted it to come. Philosopher Kahlil Gibran, in the famed book, The Prophet, writes “The deeper 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 my heart. I could have chosen to fill that cavern with bitterness, resentment, and fear. Many people do just that when hit with tremendous sorrow. I admit I had my share of those harsh emotions. Eventually, however, I chose joy. I did not want 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, and second, look for all the ways it is available to us. I chose to fill that empty space with joy, with as much joy as I could. My family has a better life because of that choice. Life is filled with certain defining moments when you know your life will never be the same. However, it is not the moment itself that defines your life. It is 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. What will you choose?


Loving a Child with a Life-Altering Disease

Sharing Your Defining Moment

In a workshop environment, with parents and caregivers who have just recently received the diagnosis and with those who have spent some time living with the diagnosis, we share this moment early on. The act of sharing this very intimate moment is extremely powerful and liberating. It unites everyone in the room in a special way because we can all relate; we all have our own similar but different stories. In sharing our stories, we create a safe place in which to look at and acknowledge the emotions we would otherwise run from — the emotions that haunt 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 emotions have over us. As we loosen the restrictive hold of those emotions, they no longer hold us hostage. We begin to heal as we open our hearts to access the joy available to us. What was your defining moment? Do you recall the exact moment when you realized your life would not be the same? Now, I understand how hard that moment might have been to live through the first time, and you may not want to go back to that defining moment, much less share it with others. These defining moments can be so raw, so emotional, and so private that some people even hide them from themselves. However, the ability to pinpoint that moment and share it is a way to start healing. We need to heal ourselves so that we can better enjoy our lives and be better caregivers for our children. Would you be willing you share your defining moment?


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

What we are aiming for is an opportunity for you to express your feelings and have someone hear you out. Many times we don’t share the hard emotions with our friends and family because we don’t want to burden them. Other times, our friends and loved ones shy away from having those touchy conversations, because they have absolutely no idea what to say if you cry or start expressing deep, dark emotions. Having this script takes the pressure off both sides. Of course, if you want to share more or continue the conversation, that’s just fine. In the event you find it too hard to actually speak extemporaneously about your defining moment, you can write it out and then give it to your friend to read or simply read it aloud yourself. Use the method in which you feel most comfortable; the important thing is to share the moment. If you choose to write it, I invite you to include all the words, thoughts and emotions you can recall, recognizing and acknowledging all the feelings your defining moment holds for you. If you don’t have anyone with whom to share this moment, or if you are reluctant to share it with anyone you know, I invite you to share that moment with me. I invite you to share your moment with me, even if you do have others with whom to share. I would simply love to connect with you. You can send your written life-defining moments to me at Star@ihatemd.com.

Here’s another suggestion: Start a journal. Journaling is a method for exploring your thoughts and feelings regarding the events in your life. Getting your thoughts out of your head 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 even manage stress. There are exercises throughout this book designed to guide you toward your true feelings and lead you toward a life of joy and happiness. Some of the questions I ask may prompt more reflection, and it would be great to have them all in one place. Who knows – you may have a book in you – if not to share with the world, perhaps to share with your family, or just for your own peace of mind. To get the most out of this journey, I invite you to start a journal.


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’s background in employment litigation and diversity counseling allows her to connect with diverse audiences, further enhancing her effectiveness as a speaker, trainer and executive coach.

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

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

Star is especially committed to organizations that support parents with special kids. She is a volunteer, speaker and workshop leader for informal support groups and national organizations including 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 the history 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

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