When Elizabeth had a her last seizure on February 9th, she didn’t wake up. Although a hospital team worked on her to bring her back, they eventually pronounced her dead and let her go. As Jim and I took turns holding her body to say goodbye, I felt guilty—was my prayer the reason she was taken from us? I couldn’t confess that to Jim. It became my tormenting secret.
Two weeks later, my father handed me a single sheet of paper. He said, “Read this.” The fairytale he felt inspired to write, “The Woodcutter’s Tale,” spoke to my “little secret” and I cried in relief. It was time to share my guilt with my husband. After Jim read the fairytale, I found the courage to admit to him what I had asked God to do for Elizabeth.
His response? He said, “I had been praying that too.”
I have reread “The Woodcutter’s Tale” many times because I find comfort in it and it gives me hope for tomorrow. Elizabeth’s aunt illustrated it so I could have something lovely to frame and hang on my wall.
“The Woodcutter’s Tale” is included in my memoir about Elizabeth called "Anything But a Dog!" It's about her life with her big tomboy sister and an old dog who became her constant companion on our sofa for the last five years of her life (Elizabeth was unable to walk, talk or feed herself because she was born disabled by congenital CMV—a preventable virus that I will discuss later in this booklet).
I have been given permission by the publisher of my memoir, “Anything But a Dog!”, to publish “The Woodcutter’s Tale.” I've included an afterword written by Julie Russell, LCSW, who seeks to help individuals understand the grieving process and to return to a life with purpose and meaning.
Surviving Loss: The Woodcutter's Tale may be used by readers to begin to speak of their own losses, whether by discussing the fairytale,identifying with my experience finding purpose, or in the portion on understanding and coping with the natural process of grief
by Richard W. Avazian
Once upon a time, long, long ago in a faraway land, lived Hans, a woodcutter, and his wife Hilda. They had a 19-year-old daughter Matilda and a ten-year-old son Stefan.
The woodcutter summoned the old midwife, a gray-haired woman who also served as a doctor.
“Hans, Hilda, I am sorry to tell you that Stefan is beyond my help and must soon die.”
Struck speechless by this pronouncement, they heard the neighing and hoof beats of horses outside their cottage.
Hans went out to discover that the Princess in her royal coach had stopped.
“I was returning to my castle when I heard your son was sick. Bring me to him.”
Hans led the Princess inside and she beheld the dying Stefan.
“Let me take him home with me and I will heal him. However, I will keep him with me as I have no sons after four years of marriage.”
Although it broke their hearts, Hans and Hilda agreed for they knew it was best for Stefan.
After a few years, Matilda married a cooper and moved to a village about ten miles distant.
Though they missed their daughter greatly, the couple now had the dove for company.
Hans said, “Let us go outside, bring our bench and sit on it, hold hands and look at our dove.” Hilda agreed and they brought their bench outside.
They settled themselves on the bench and faced their cottage, but were surprised to see that the dove was no longer on the roof.
Finally growing too feeble to move, they heard the sound of horses’ hooves. With their last breaths, they beheld the royal coach approaching.
“Come home with me,” said Stefan. Overjoyed, and amazed that they suddenly no longer felt feeble, the couple stepped into the coach.
As the coach started to pull away, Hans and Hilda looked back to see if their dove had returned. But the dove, no longer needed, was gone.
This disappointment was replaced by their boundless joy at seeing how happy Stefan had been and by knowing they would be with Stefan forever in their new home.
Note from Lisa Saunders:
The Woodcutter’s Tale was originally published in “Anything But a Dog!” (Unlimited Publishing LLC, 2008), used by permission. Please visit
http://www.unlimitedpublishing.com/saunders for more information.
Following the information about the author and illustrator of “The Woodcutter’s Tale” are comments from a licensed mental health professional about loss and grieving. More about Elizabeth, and how to prevent the kind of disabilities she faced, later in this book.
Julie Russell, Licensed Clinical Social Worker
A traumatic event, often a death of a loved one, causes those who are connected to the loss to experience the multiple stage process known as grief. Understanding grief empowers those who continue to love the individual who has passed.
Five stages of grief, introduced by Dr. Elizabeth Kubler-Ross in 1969, are frequently cited. Grief is unique to each individual and is characterized by the relationship between the survivor and the loss.
DENIAL. Not believing the death is real is recognized as the first stage. Often a person is emotionally shocked and may question whether the person has died. This first stage allows emotions to be placed on hold and critical decisions regarding burial, organ donation and other arrangements to be made.
ANGER. The overwhelming feeling of anger is often the second emotion experienced by the bereaved. At this time feelings are often directed toward the person who died, healthcare professionals, and oneself. During this stage one may wonder why God would allow death and suffering to occur. When the care-giving process involves difficult decisions survivors often feel increased burden. One may express the pain of anger as irritation or frustration. Anger is never a bad emotion, but a necessary one for many to reach a sense of peace.
BARGAINING. As individuals work through the anger and pain, an intellectual aspect enters the grieving process. It is during this time that a person wonders “What if I had…” or “If only the medical treatment had …” Intellectual answers are inserted in the areas where survivors have emotional questions. Often denial, anger and bargaining occur to some degree at once. A Survivor will momentarily forget the death has occurred, usually in the process of performing a formerly routine task such as picking up the phone to call the individual or entering the room a loved one was cared for when ill. Upon remembering one may face anger or begin the process of questioning what may have been a series of difficult decisions.
SADNESS. The loss of a loved one leaves a hole in the survivor’s life. The emptiness can often be described as sadness and loneliness. This, like anger, is a normal response to the death of a loved one. This hole may threaten to consume someone after a loss, but it is common to all who have grief.
ACCEPTANCE. The final stage of grief is acceptance. Life will never be the same, and accepting the death of a loved one does not equate to agreeing with it, or not wishing it had occurred. It only means that the survivors understand that the death has occurred and it is permanent. Acceptance most often comes in bits and pieces as one cycles through the stages of grief. A person has less intense periods of denial, pain, bargaining and sadness as the moments of acceptance become longer.
Several steps can assist a bereaved individual to heal. A start is by understanding that healing is a journey towards wholeness. This journey will have difficult times, unexpected obstacles, and periods when it seems to be easier. One step is to incorporate a support network to help. This is an important step in ensuring self-care.
The process of identifying a support system can be formal for some and may be more natural for others. Have one or two individuals with whom one can rely on to assist with funeral arrangements and who can be truthful in regard to the emotional process. These two types of support may come from more than one person. It is not necessary that the individual not be impacted by the death, but it is necessary that the support group understand the bereaved person is in need of their assistance.
When a loss occurs, many people reach out and offer help, but it can be difficult for one to accept the help. A person can call another who extended an offer, and say, “I would appreciate it if you could help me go through the remaining belongings and ensure they are donated to someone who can use them,” or, “I am not sure if I am good company since I am very sad this week, but it would be nice if you could keep me company for an hour or two.”
Bereaved individuals often feel isolated and reaching toward a social support system is a step in the healing process. If a scheduled event arises and a person experiencing grief is emotionally not ready to attend, be honest: “I am missing the family member who died too much to make a public appearance today.” Persons, who are part of the support network, can provide a less intimidating option by substituting a less demanding encounter such as coffee instead. This reduces the sense of failure associated with not being able to return to formerly enjoyed activities. The goal is returning to a place where life can be fully experienced, but it will not be experienced in the same manner.
As a bereaved individual adheres to a structured routine, some areas of self-care will be ensured. Incorporating exercise or other activities is essential in staying healthy. Often eating patterns and sleep is disrupted following the death of a loved one. Planning meals, activities and even appointments at the hair dresser and/or barber shop allows one to maintain physical needs while producing a sense of normalcy. As part of self-care, a person may want to learn specific relaxation techniques or incorporate new ways to reduce stress.
Remembering the positive is an important element in healing. Each time one thinks, “I will never see the smile of the person I lost,” a positive statement can be included. List the positive statements. “I love the way she laughed.” “I remember all the smiles he gave to others with his kind manner and good humor.” Listing the statements in writing is often necessary as one begins to move from what is gone toward positive memories that warm one’s heart. First one works through the pain of the loss, but part of the journey is to incorporate positive thinking. This is one method to honor and respect the memory of the loved one.
A bereaved individual is often comforted when able to assist in forming a positive legacy— donating clothes, medical supplies and other items may be a start. Follow-up visits from religious communities can assist the bereaved in incorporating sympathy cards and other memories into a treasured memory book—this will give the individual a place to turn to when in need of the positive statements. By incorporating positive thinking, a support system, and ensuring self-care, one is taking the steps needed to return to a desired quality of life.
Grief is both a healthy and a normal response to loss – it is the process that leads to peace. In this tale, a couple adjusted to their loss of a child by finding a direction for their continued love--the dove.
While grief is a normal response to loss, individuals often find navigating its complexities with a licensed therapist beneficial. Many health insurance companies cover services related to grief and loss and there are support groups in most communities. Lisa Saunders shares how she experiences her grief and continues to live a complete life following the death of her daughter in the following account. Grief is a path that many navigate to allow them to continue to find meaning and purpose in life.
Julie Russell, MSW, LCSW, is a clinical social worker specializing in the treatment of trauma and the scope of emotional and mental disorders that prevent one from achieving a sense of wholeness. She can be contacted at 860-415-9573 or firstname.lastname@example.org. Her website: www.julierusselllcsw.com
Lisa Saunders, Elizabeth’s mother, here again. Every year, I update my blog with the following message:
The Empty Christmas Chair—
holidays without my daughter
My daughter Elizabeth would have turned 23 today, December 18, 2012.
Expecting Elizabeth, due to be born on Christmas Eve of 1989, had been an exciting experience. But the moment she arrived on the 18th, I felt a stab of fear. My immediate thought was, “Her head looks so small—so deformed.”
The neonatologist said, "Your daughter's brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself." He concluded that Elizabeth's birth defects were caused by congenital cytomegalovirus (CMV). Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them.
Why hadn’t my OB/GYN warned me about this?
While I was pregnant with Elizabeth, I not only had a toddler of my own, but I also ran a licensed daycare center in my home. I felt sick at what my lack of knowledge had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities later in life. But Elizabeth's case was not a mild one.
When my husband Jim heard Elizabeth's grim prognosis, he stared at her and said, “She needs me”—just like Charlie Brown with that pathetic Christmas tree.
It took me about a year, but I eventually stopped praying that a nuclear bomb would drop on my house so I could escape my overwhelming anguish over Elizabeth's condition. Life did become good again—but it took a lot of help from family, friends, and the Book of Psalms. We were eventually able to move forward as a happy, "normal" family.
Sixteen years later, I awoke feeling so proud of Elizabeth. It was her 16th birthday and just one week before her 17th Christmas. When the song “I’ll be home for Christmas” played on the radio, I cried thinking how hard Elizabeth fought to be home with us, overcoming several battles with pneumonia, major surgeries, and most recently, seizures. Weighing only 50 pounds, she looked funny to strangers as a result of her small head and adult teeth, but she was lovely to us with her long, brown hair, large blue eyes and soul-capturing smile. Although still in diapers and unable to speak or hold up her head, Elizabeth was very happy and loved going for long car rides. She especially enjoyed going to school and being surrounded by people, paying no mind to the stares of “normal” children who thought she belonged on the "Island of Misfit Toys."
Less than two months after she turned 16, I dropped Elizabeth off at school. Strapping her into her wheelchair, I held her face in my hands, kissed her cheek, and said, “Now be a good girl today.” She smiled as she heard her teacher say what she said every time, “Elizabeth is always a good girl!” With that, I left.
At the end of the day, I got the call I had always feared. “Mrs. Saunders, Elizabeth had a seizure and she’s not breathing." The medical team did all they could, but she was gone.
While holding Elizabeth’s body on his lap, my husband looked down into her partially open, lifeless eyes and cried, “No one is ever going to look at me again the way she did.”
Now, as I prepare to celebrate my seventh Christmas without her, it is with some heartache that I bring down the holiday decorations from the attic. Elizabeth used to love to sit on the couch with her big, formerly homeless old dog Riley, and watch us decorate.
Now, I perform a new Christmas tradition. I carefully unfold the black and red checked shirt Elizabeth wore on her last day and hang it over an empty chair beside our fireplace. Although she can't be home for Christmas, I feel that she is my “Tiny Tim” who would say if she could, “God bless us, everyone!”
Although I miss Elizabeth, I’m glad she is free from suffering, glad she is safe in her new, Heavenly home. When my time comes, I will see her again.
The Only Thing I Can Do for Elizabeth Now
Since Elizabeth no longer needs my care, the only thing I can do for her now is to care for those not yet born—to prevent them from suffering as Elizabeth did. I do that by speaking and writing about congenital CMV prevention.
After presenting her life at the international Congenital CMV conference held at the Centers for Disease Control (CDC) in Atlanta, GA, in 2008, scientists from all over the world approached to thank me for inspiring them to continue their work.
Mothers, on the other hand, pushed their children towards me in wheelchairs and asked, “Why didn’t my OB/GYN tell me how to prevent this?” One mother even asked, "Learning what you did, why didn't you do all you could to shout it from the rooftops?"
Until OB/GYNs make CMV prevention a standard practice of care, I try to "shout it from the rooftops" through my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV. I hope to reach a general audience by sharing the unusual account of how a big, old homeless dog found his way to Elizabeth's side. At the end of the book, I include CMV prevention and treatment tips from the country’s leading CMV experts.
As Jim and I wait to be reunited with Elizabeth, we too, were given a “dove” to keep us company—a beagle/basset hound we named Bailey. Although he was given away by his former owners—at least twice—his pesky antics and abundant affection were just what we needed to laugh again. He is my side-kick in my latest light-hearted adventure book, Mystic Seafarer’s Trail, where I tried to follow in the footsteps of Amelia Earhart. I figured if I became thin and famous like her, the media would listen to my CMV prevention message.
Bailey resting after a long trek along the Mystic Seafarer’s Trail
PREVENTING CONGENITAL CMV
Few women have heard of congenital CMV (cytomegalovirus) and more than half of OB/GYNs surveyed admitted they don't warn their patients about it.
According to the CDC:
· Every hour, congenital CMV causes one child to become disabled
· Each year, about 30,000 children are born with congenital CMV infection
· About 1 in 750 children is born with or develops permanent disabilities due to CMV
· About 8,000 children each year suffer permanent disabilities caused by CMV
The CDC makes the following recommendations on simple steps you can take to avoid exposure to saliva and urine that might contain CMV:
Wash your hands often with soap and water for 15-20 seconds, especially after
· Changing diapers
· Feeding a young child
· Wiping a young child’s nose or drool
· Handling children’s toys
· Do not share food, drinks, or eating utensils used by young children
· Do not put a child’s pacifier in your mouth
· Do not share a toothbrush with a young child
· Avoid contact with saliva when kissing a child
· Clean toys, countertops, and other surfaces that come into contact with children’s urine or saliva
Congenital CMV prevention brochure:
Prevent several disease related birth defects by reviewing: http://www.cdc.gov/ncbddd/pregnancy_gateway/infections.html
Note: If you are interested in seeing pictures of Elizabeth beside her big, old canine and reading an excerpt of Anything But a Dog! The perfect pet for a girl with congenital CMV, visit my website at: www.authorlisasaunders.com or blog at: congenitalcmv.blogspot.com. If the soft cover version of Anything But a Dog! is purchased through the publisher’s link at www.unlimitedpublishing.com/cmv, a portion of the proceeds will go toward congenital CMV research and parent support at The National Congenital CMV Disease Registry and Research Program. Located in Houston, Texas, the Program conducts clinical and laboratory research studies on congenital CMV disease. Visit them at: bcm.edu/pedi/infect/cmv
Other Congenital CMV Resources:
Congenital Cytomegalovirus Foundation--Their mission is to prevent birth defects resulting from congenital CMV infection. To contact the country’s leading congenital CMV experts, visit:
Stop CMV - The CMV Action Network--Their mission is to prevent and eliminate congenital CMV and to improve the lives of all people affected by congenital CMV. The non-profit organization is comprised of families, friends and medical professionals personally affected by CMV and committed to public education efforts to prevent future cases of the virus. Visit: StopCMV.org.
Brendan B. McGinnis Congenital CMV Foundation—The non-profit organization is dedicated to raising awareness of CMV, to supporting CMV vaccine research, and to supporting families affected by CMV around the world. Visit: cmvfoundation.org
BOOKS BY LISA SAUNDERS
The true story of a big, homeless canine and a little girl who needed him.
"Sheds light on a disorder that is preventable and not talked about enough. If you're an animal lover, you'll love the critter tales as much as the special-needs storyline...really lifted my spirits." Terri Mauro, About.com
Excerpt from Chapter One:
“Mom, can I have a dog?” my six-year-old daughter Jackie asked, standing next to me while I washed the breakfast dishes.
I cringed. The dreaded day was here—all kids inevitably ask for one. And why wouldn’t they? Movie dogs like Lassie drag you from burning buildings and keep you warm when you’re lost in a blizzard. But by the time we're adults, we've learned the truth about them: they urinate on your new wall-to-wall carpets, dig holes in your leather recliners to hide their rawhide bones, and bite your neighbor's kid.
“No, you can't have a dog,” I said, bracing myself for the age-old argument.
“Why not?” she demanded.
My mind raced for good excuses. Might as well start with the standard one: “A dog is too much work. And I know I'll end up being the one who walks it in the pouring rain.”
“I promise I'll take care of it. I will, I really will!" Jackie exclaimed.
“Sure,” I thought, “that’s what they all say.” Avoiding her pleading eyes, I picked up a plate sticky with leftover syrup. “The truth is,” I said, “we just can't risk a dog around your sister.” I hated admitting that. I didn't want her to blame her little sister, three years younger, for being so fragile. But taking care of Elizabeth, who was quadriplegic from cerebral palsy, was already enough work without adding a dog that might playfully nip at her.
I know! I’ll give Jackie the “lip-severing story.” That’ll convince her we can’t have a dog around her sister.
“When I was 13,” I began, “I talked Grandma and Grandpa into letting me have a Weimaraner. His name was Bogie—short for Humphrey Bogart—and he was a nipper. One day, my two-year-old cousin Suzannah was playing on the floor underneath the table with a Popsicle stick in her mouth. Bogie snapped at the stick and bit her lip off! My grandmother got the lip off the carpet and wrapped it in a paper napkin to take to the hospital. But it couldn’t be sewn back on. A surgeon fixed Suzannah’s face, but when we got home, my mother loaded Bogie into the back seat of the car and took him to the vet’s. I never saw him again. He took the ‘long walk’ as they say in the Lady and the Tramp movie.”
I paused so Jackie could let the horror of the incident sink in.
But all she wanted to know was, “Where’s Suzannah’s lip now?”
“Gosh, I don't know! The last time I saw her lip it was stuck to the napkin, all shriveled and mummy-like on my grandmother’s bookshelf. But that’s beside the point; can't you see how dangerous a dog could be for your sister? She can’t speak—how would she call out to us if she was in another room and the dog was bothering her?”...
This excerpt was originally published in “Anything But a Dog!” (Unlimited Publishing LLC, 2008), used by permission. Please visit
http://www.unlimitedpublishing.com/saunders for more information.
Includes secrets behind Amelia Earhart's Wedding
While searching for the Seven Wonders of Mystic with her beagle/basset hound, author Lisa Saunders uncovers the secrets behind Titanic's shoes and Amelia Earhart's wedding. But will she ever find an adventure of her own—one that will make her thin and famous (she plans to use her fame, if she ever gets any, to raise awareness of congenital CMV)? When walking the Mystic Seafarer's Trail (which Lisa designed for those who don't like to go uphill), she meets a blind sailor who invites her on a long, winter voyage. Can this plump writer defy squalls, scurvy, and her fear of scraping barnacles to survive this epic journey?
Excerpt of Mystic Seafarer’s Trail from Chapter One:
Moments after I stepped out of my new home with my hound for our first stroll through the historic seacoast village of Mystic, Connecticut, a woman pulled over in her van and yelled, "Excuse me."
Assuming she was a tourist wanting directions to Mystic Pizza or some other attraction, I wasn't prepared for what she really wanted to know.
"Do you realize the back of your skirt is tucked into your underwear?"
More info: www.authorlisasaunders.com
About Lisa Saunders
Lisa Saunders is a speaker and award-winning writer living in Mystic, Connecticut, with her husband and beagle/basset hound. A graduate of Cornell University, she is the Congenital CMV Foundation parent representative and the author of several books. She works part-time at Mystic Seaport as a history interpreter and is a winner of the National Council for Marketing & Public Relations Gold Medallion.
More info: www.authorlisasaunders.com, email@example.com
Need a speaker for your group? Lisa is available to speak on:
1. A Time to Weep, A Time to Laugh—Moving forward after a loss
2. Stop CMV (Lisa is the Congenital CMV Foundation parent representative)
3. Civil War: Union Private & His Wife (available as a talk or one-act play)
4. Finding Humor on Life’s Adventures—and Misadventures!
5. Seven Wonders of Mystic
6. How to Get Published
7. How to Get a Job (Lisa is a former employment recruiter)
8. How to Get Free Publicity
9. Children’s Writing Workshop (Cornell University included Ride a Horse, Not an Elevator in its “Horse Book in a Bucket” program)
10. The Hanging of Henry Gale—from patriot to traitor in Shays’ Rebellion
11. Graveyard Adventures—you never know who you will meet!
Lisa has appeared: USA 9 News… Cornell University… West Point Museum… Washington Independent Writers Association… Centers for Disease Control and Prevention (CDC)… Seward House… Lincoln Depot Museum… Johns Hopkins University… Siemens Healthcare Diagnostics… Civil War Round Tables...
ABOUT JULIE RUSSELL, MSW, LCSW
Julie Russell, MSW, LCSW, is a clinical social worker specializing in the treatment of trauma and the scope of emotional and mental disorders that prevent one from achieving a sense of wholeness. Her skill in treating clients who have been victimized by others, as well as those who have experienced other traumatic events, is evident in her passion for her work.
She has provided psycho-educational lectures for the public as well as other professionals and infuses humor with facts and insights in her speaking engagements.
Julie Russell has worked with diverse populations in outpatient and residential settings to assist youth, adults and families achieve change in behaviors and mental health. In addition, she has worked extensively with the justice system, educational system, and the military to ensure her clients’ goals are supported by involved third parties.
After completing graduate school at Tulane University in 1998, she worked at the National Center for Children and Families in Bethesda, MD, providing therapy to youth with complex emotional and behavior disorders. During this time, she responded to the tragedies of September 11.
After returning to New Orleans, she treated individuals who experienced trauma resulting from Hurricane Katrina.
Julie Russell has been a supervisor and mentor for other professionals and she is a resource for individuals who are blind. While in her final year of undergraduate studies at Tulane University: Newcomb College, she became blind unexpectedly. She returned to her studies, earning her bachelor’s degree in 1996. She remains a strong advocate for women and individuals with disabilities. In addition to her work as a therapist and a professional speaker, she enjoys outdoor activities including hiking, camping, sailing and attending music and theater productions.
Julie Russell now resides in Mystic, CT, where she continues to work with individuals experiencing emotional difficulties. She can be contacted at 860-415-9573 or firstname.lastname@example.org. Her website: www.julierusselllcsw.com
Author's website: www.authorlisasaunders.com