Dying to LiveStories that will inspire you to start talking about the end of life without fear. What would it be like? To know you are dying and still live your life to the fullest? Death does not have to stun us with crushing grief, we can prepare for it. The true life stories in Dying To Live are filled with love, challenges, tears and laughter. Dying To Live is a must read for anyone who will stand in the fire with loved ones leaving this world. Death is a part of life. Celebrate the process and learn from the experiences of these incredible people. You will: Discover ways to experience life and death without fear; Be inspired by love and hope with each remarkable story; Laugh and cry as you see we are all intrinsically the same; Celebrate the possibilities in your own life and death; Learn that you get to make up your own rules"Dying to Live reminds us that the end of the road can be embraced with love, insight, compassion and even joy. A book to be read and remembered" Judy Reynolds, Author, Once Upon a Vine. Dying to Live is an extraordinary experience, revealing the soul's yearning for love, no matter what the circumstances may be. These stories will expand your heart into realms you never knew existed. Percy McManus, founder, Health Excellence, Inc. Joanne Harvey MSW is a hospice social worker, life coach and meridian practitioner with 25 years of experience guiding patients, individuals and families though the challenges of life, terminal illness and self-realization. "There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everthing is a miracle" Albert Einstein

Dying To Live

Embracing The JourneyBy Joanne Harvey

AuthorHouse

Copyright © 2010 Joanne Harvey MSW
All right reserved.
ISBN: 978-1-4520-4750-8

Contents

Introduction..............................................xiThe Scent of Honey........................................1Leaving on Friday.........................................11Carrots, Eggs, and Coffee.................................21When Someone Cares........................................25The Kindness of Strangers.................................37For The Love of Family....................................69Tapping into the Present-A Love Story.....................87Finding Honor.............................................99Jack and the DragonFly....................................115Resources.................................................125Recommended Reading.......................................130What are Meridian Tapping Techniques?.....................135

Chapter One

The Scent of Honey

When the hospice intake team drove up to the log cabin, children were playing in the yard. A little girl wearing a big yellow hat stopped and looked curiously at the ladies who had invaded her play time. She took off her hat, and Dalia's beautiful lavender eyes defined her face. A face that had seen it all in her four short years of life-but was determined to ignore the impact.

Dalia was the only girl in her family, second to the last of seven children. Her laughter sounded like a fairy bell. Her brothers, even the youngest, towered over her, but she was obviously the one in charge, directing play with her tiny hands and running through the wet grass in her black patent leather shoes.

Dalia ran with her mouth open and her hands outstretched, as if she was trying to grab every bit of life she could. She had been cancer-free for eighteen months, but now it had come back with a vengeance. This time it was throughout her body. She had tumors on her femur and in her lungs, and the doctors said there was nothing else they could do.

Dalia's parents, John and Debbie, fought the prognosis for more than eight months, doing everything they could to keep their sweet little girl alive. Debbie was a skilled, self-taught nurse, receiving her education from doing, rather than going to school for it. She knew everything medically that had to be done for her daughter. She could draw blood, start an IV, tube feed, bandage and even soothe and sing songs right in the middle of crisis. But the oncologist's prediction was the hardest thing Dalia's parents faced.

When hospice was suggested by the doctor, at first John and Debbie refused. "She is doing just fine, thank you." They didn't want to give up hope for their daughter.

Hope can be such a loaded word, one that means so many things. You can hope to see your children grow up to be happy. You can hope to always do your best. You can hope for many things, but when someone, no matter what age, is dealing with a life-threatening illness your hopes change significantly. You do not want to see your loved one suffer. Sometimes hope is simply that my little girl gets to live with love and laughter with the least amount of pain, for as long as possible.

Eventually Debbie realized that her daughter needed more help than she could provide. Often Dalia's pain could not be controlled and Debbie could see her little girl was losing the fight. After discussing it with John, she bravely called hospice.

We were invited into the house and explained to John and Debbie that hospice is a support team, a group of trained individuals who are committed to enhancing the excellent care that Debbie was already providing. John and Debbie eventually understood that hospice was not just a medical team, but people who would celebrate Dalia's successes, be her advocate, be the doctor's eyes and ears and support the family during the difficult days ahead.

Coincidentally and unexpectedly, on the same day hospice was introduced to Dalia, Debbie discovered she was pregnant.

One month later Dalia was told the news first. She was so happy; she was finally going to have a sister! She was even given the honor of naming the baby.

After much deliberation, Dalia decided to name her Purple Sage. Dalia proudly announced that she had named her new baby sister, still in her mommy's tummy, and that the baby would be called Sage, for short.

Each time she announced the news, she always giggled her tiny belllike giggle. Why she decided on this name no one really knew. Purple was her favorite color, but Sage was not a word Dalia normally used. She loved it, though, and she knew Purple Sage would love it too.

Dalia was very social. It became obvious in our first meeting that she knew what she liked, and wasn't afraid to tell me. She said she loved kitties, especially the white ones. She liked her brothers, but they were pretty silly most of the time, and she liked vanilla ice cream with blackberries on top.

Dalia would tell me that her favorite thing "in the whole wide world" was to ride with her family on their four-wheeler. When she was riding, she said she felt free and loved because everyone was together, arms around each other, everybody happy.

Her favorite place to ride on these family adventures was up the canyon not far from her home, where a natural spring bubbled out from a huge boulder, and wild purple butterfly plants grew with abandon. She told me in a whisper, "Did you know fairies live in those butterfly bushes? The way you can tell that fairies are there is from the sweet honey smell."

She giggled when her brothers disputed the fairy stories. Her look plainly said, they're just boys, how would they know?

The summer was sweet for the family, cool breezes and lazy days of playing in the yard. Dalia's tumors grew, but most of the time Debbie controlled her child's discomfort with medication and buckets of love.

In the fall, Dalia's decline was rapid. Debbie found that she needed the hospice team to visit more often for support. The nurses were there daily to deal with Dalia's symptoms and the constantly increasing pain.

I visited regularly for emotional support and encouraged John and Debbie to talk about Dalia's journey. Even though she was first diagnosed before she was a year old, they still struggled with the devastating news.

Debbie and John lived a very healthy lifestyle. There was no reason why cancer had touched their little girl. But most of all we talked about Dalia's amazing bravery and her great personality, even with the monumental challenges she faced daily. We talked about the wonderful lessons her parents received from their child about living life to the fullest.

I spoke about the end, preparing them for the time they would have to say goodbye to their sweet Dalia.

Debbie tearfully said, "Dalia's always been a free spirit. I just want my little girl to go without pain."

We talked more about what they both saw physically happening to Dalia. John said, with his hands clenched into fists, "If I could trade places, I would in a second, but since I can't, I just want her to go gently. But," he said crying, "when I say those words I feel like I am letting my little girl go without a fight!"

Debbie wrapped her arms around her husband and held him as he sobbed with frustration.

Dalia's condition continued to deteriorate and required daily visits from the hospice nurse. The family tried to stay balanced, even with the awful circumstances playing out in their home.

Debbie and John made a point to play with all the kids in the living room at the end of the day. This day, despite very strong medication, Dalia was still in significant pain. But Dalia loved the family evening time and asked Debbie in a whisper if she could join everyone.

Debbie watched as John tenderly picked up his tiny little girl and gingerly carried her into the living room. Her brothers didn't seem to notice how heroic this simple act was, not only for their father but also for Dalia. She wanted to be with her family!

Even in her discomfort Dalia was able to boss her oldest brother, Josh, and get him to sit quietly so she could be in his lap.

Josh was 12 and big for his age. Dalia looked like a tiny doll in his lap. He was gentle with her, holding her as if she was a little glass figurine. He was very aware of what was happening, his brown eyes full of love and deep sadness. He had watched his baby sister fight this disease since he was eight. He teased her a little for bossing him around and then held still while she whispered a sassy reply that only he could hear. He smiled and looked up at his Dad, as if to say, can this really be happening?

The evening ended like all the others; each hugging and saying good night. But John and Debbie knew this would most likely be one of their last nights, all of them together.

Just after midnight, Debbie heard Dalia softly calling and quietly stepped into her room.

Dalia was wide awake, her hospital bed full of stuffed toys. Her baby brother, Robert, had even added some of his own toys before he went to bed.

Surprised to find her awake, Debbie listened carefully as Dalia asked to be taken for a ride. She wanted to ride on their four-wheeler. Debbie couldn't believe Dalia would be asking to be moved at all-her pain was always just under the surface, and to be moved would be excruciatingly painful. But that was exactly what she was requesting.

Dalia whispered again, "Mommy, take me for a ride, I want to see the fairies."

Debbie told me later that she stood there for a long time, trying to remember her little girl's face, but all she saw was an angel who had been through too much.

She got dressed, and then went back into her daughter's room and gathered her in warm blankets.

Dalia cried out a little and when Debbie tried to put her back into bed, Dalia begged, "No, Mommy, I want to see the fairies!"

Debbie walked out into the autumn night, holding Dalia, keeping her warm with a blanket around her little body.

Debbie carefully swung her leg over the seat of the four-wheeler and slowly started down the gravel road, the road that led to the bubbling spring and the purple butterfly bushes. Dalia didn't complain, she just leaned back into her mother's warmth and sighed deeply.

Debbie slowly, cautiously, drove into the night, remembering the terrifying and heartbreaking journey she and Dalia had been through.

They arrived at the spring and could hear the water cheerfully bubbling out of the crack in the earth. A cool breeze rustled the butterfly bushes, their leaves reflecting silver in the moonlight.

Dalia cried out when Debbie tried to lift her off the four-wheeler and said she wanted to stay right there. So Debbie wrapped her arms around her daughter and held her close, gently, not moving.

After some time, Dalia said in her sweet little bell voice, so quiet that Debbie almost missed it, "Look, Mommy, the fairies are waiting for me! I love you, Mommy!" And then she relaxed completely into Debbie's arms.

Debbie stayed still, looking for the fairies. She was surrounded by the scent of honey from the butterfly bushes, but she didn't see any fairies. She knew her little girl had gone to be with them. She softly said, "I love you, too, sweet Dalia."

Debbie sat there for a long time, hoping to freeze the moment. She held her little girl close and wished hard for things to be different.

The sun started to faintly appear in the east. She turned the four-wheeler around and headed home.

Debbie drove back slowly. She wanted to be alone with her daughter as long as she could. She didn't want to stop. She felt that if she could just ride and ride and ride, she wouldn't have to acknowledge what had just happened.

When she got home she tenderly laid Dalia back in between her stuffed toys and sat there until she heard John getting up. Even then she didn't want to shatter the moment, but knew he would want to know. She got up slowly and walked into their bedroom to tell him.

John walked into his daughter's room and lifted his little girl from the bed and cradled her in his arms. His sobs could be heard throughout the house.

The reality of Dalia's death rang in Debbie's ears.

Just at that moment the sun peeked through the window. A bright prism of purple and pink reflected off a tiny glass fairy hanging from the curtain rod and lit up the bed and Dalia's daddy. Debbie knew it was Dalia, she could feel her presence. So did John, who stopped crying and looked around as if he had just felt her touch him on his shoulder. They looked into each other's eyes and without a word, knew that Dalia was finally free.

The hospice nurse, Cindy, arrived to help where she could. She prepared a wash basin full of warm rose-scented water, and Dalia's mommy and daddy washed and dressed Dalia for the very last time. They stayed there in the room, softly talking, sharing memories, laughing, crying, and loving their little girl who had fought so courageously.

When the boys woke up, they each were given time to say goodbye and let the death of their sister settle in before anyone else was called. Their parents had prepared them and they all knew that Dalia had stayed as long as she could in this world. Robert got his favorite bunny and Josh helped him tuck it under Dalia's arm.

Cindy called the funeral home when the family was ready, and everyone said one more goodbye. They all stood in the driveway, quiet, watching the hearse disappear.

John was the first to climb onto the four-wheeler. Debbie followed, pulling Robert up to sit between them, then the older boys claimed their seats. They drove up the gravel road together, up to Dalia's favorite spot.

At the spring John turned off the motor. In silence, no one moving, they just held on to each other, all watching for a sweet little fairy with a laugh that sounded just like a fairy's bell.

One Year Later

Six weeks after Dalia died, Purple Sage was born. She holds everyone's attention with her happy, easy-going nature and sweet belly laugh. Yes, the family call her Sage, just like Dalia said they would.

Now just beginning to walk, Sage keeps her family on their toes. She has the most beautiful lavender eyes (just like her big sister), a peach complexion, and blonde, shiny hair. She is beautiful and is treasured by her family.

The boys received age-appropriate grief support through hospice, and they are doing well. I helped their school sponsor a Life Celebration for Dalia and it proved to be healing for all involved.

Josh has recently reached out to other children in his school who have also experienced loss. Because the boys may need more grief support as they develop and grow older, hospice will refer them to excellent grief counselors, if they express the need.

John went back to work and is dealing with the loss of Dalia in his own way. He feels strongly that simply by supporting his family he is doing something constructive. After reading and learning about recovering from his own grief, he does his best to support Debbie in her grieving process. They decided to schedule regular dates which are only for having fun and alone time, which John says is wonderful.

Debbie struggles with the grief of losing Dalia. She lived every day of her daughter's illness, staying with her in the hospital, holding her when she was receiving treatments, and being responsible for reducing her suffering. She wouldn't have wanted to be anywhere else. She believes mothers are supposed to make things better for their children.

But, in the end, no matter how hard she tried, she could not. When Dalia died, she was prepared, and possibly a little relieved; at least her child was no longer suffering. Dalia's death left a very big hole in her heart.

Debbie is scrapbooking their journey together and the family is still actively recounting funny and touching stories about Dalia. Debbie says, "I just want to know she won't be forgotten."

She also wants to know that her other children will be OK, so they get regular checkups. Everyone is currently very healthy.

Debbie is enjoying her growing sons, her husband, and healthy baby girl.

Hospice bereavement support is available to a family for 13 months and Debbie has accessed some of the services. I have worked with Debbie using an energy treatment called meridian tapping (page135) to help her release any lingering guilt and regret. She says after the treatment she can think of Dalia and remember the good times, more than the bad. She spends time at the bubbling spring with the wild butterfly bushes whenever she gets a chance. Debbie says every once in a while she can hear a tiny little fairy bell, and she knows Dalia is there with her. "Life is not about waiting for the storms to pass ... it's about learning how to dance in the rain."

Chapter Two

Leaving on Friday

Pearl was tall, lean, and tanned to the point of old leather. She lived alone in a house her husband had built in 1939. She was 97 years old and still drove her old Buick if the weather was bad, but preferred to walk.

Her home was paid for and there was little she wanted any more. She was proud of her 50 year-old, well-kept garden in the backyard that brimmed with vegetables and flowers. She fed the birds and shared her vegetables with the neighbors. She was happy and content.

When she needed help with anything she called her niece, Rebecca. So the day Pearl called Rebecca it wasn't unusual, but her request was.

(Continues...)

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