Friday, May 31, 2013

June: National Congenital Cytomegalovirus Awareness Month--Stop #1 Viral Cause of Birth Defects!

According to the Centers for Disease Control and Prevention, June is National Congenital Cytomegalovirus Awareness Month.

Doctors do not routinely warn women of childbearing years how to prevent contracting this virus that causes more disabilities than Down syndrome. This message should be, but is not, as well-known as  "don't change kitty litter when you are pregnant." Probably because no one really wants to hear that they shouldn't kiss a toddler around the mouth or share cookies with them.

Much of my writing work since the death of my daughter Elizabeth (see her headstone) has centered around trying to raise a prevention message about congenital CMV (cytomegalovirus). It is the disease that disabled and ultimately killed her (she died during a seizure).

If interested in helping raise awareness of congenital CMV and/or encouraging women to participate in an ongoing, national treatment trial,* see below, or I would be happy to speak to you.

I try to broadcast a congenital CMV prevention message through my speaking and writing. I hope to reach my goals as the parent representative of the Congenital CMV Foundation, a local TV co-host, speaking at international congenital CMV conferences (2008, 2012) co-sponsored by the CDC, and most recently, I spoke at a conference sponsored by the Infection Control Nurses of Connecticut (April '13). My books, including my humorous and historical travel memoir, Mystic Seafarer's Trail, reveal my desire to become thin and famous like Amelia Earhart so people will listen to my CMV prevention message; and Anything But a Dog! The perfect pet for a girl with congenital CMV, about my disabled daughter growing up beside her tomboy sister and a lazy, old devoted canine (it includes interviews with the country's leading congenital CMV experts and raises funds for CMV research if purchased through the National Congenital CMV Disease Registry and Research Program). In an effort to share the comfort I received from my father's fairytale after my daughter died, I published Surviving Loss: The Woodcutter's Tale, which includes comments on grieving from a Mystic based licensed clinical social worker(it's available as a free e-book at Smashwords). 

Thank you for reading this and spreading the news about CMV prevention. If you would like to speak to me personally about this disease, I will be autographing my book,
Mystic Seafarer's Trail, at Bartleby's Café in downtown Mystic on Saturday, June 1, 9 am - Noon.

Sincerely,
Lisa Saunders
Mystic, CT 06355
saundersbooks@aol.com
Lisa's congenital CMV blog:
http://congenitalcmv.blogspot.com/"

*If interested in the national treatment trial, please contact: Brenna Anderson, M.D., M.Sc., Women & Infants Hospital of RI, banderson@wihri.org, 401-274-1122 ext. 7456. See the following recent news clip that highlights another child disabled by congenital CMV, the ongoing national clinical trial seeking the benefits of a particular treatment, and another mother's work to raise awareness: Clinical trial puts congenital CMV in spotlight for pregnant women ...

 
 
 


Tuesday, April 30, 2013

Media: Please help stop #1 Birth Defects Virus--Congenital CMV (cytomegalovirus)


Dear Reporters/Newcasters,
 
Much of my writing work since the death of my daughter (pictured on left) has centered around trying to raise a prevention message about congenital CMV (cytomegalovirus). It is the disease that disabled and ultimately killed my daughter (she died during a seizure). It causes more disabilities than Down syndrome, yet very few women of child-bearing age have heard about it or know how to prevent it.
If interested in helping raise awareness of congenital CMV (and/or encouraging women to participate in an ongoing, national treatment trial,* I would be happy to speak to you. The following is my short bio, which  includes my work to broadcast a congenital CMV message through speaking and writing:
Lisa Saunders lives in Mystic, Connecticut, with her husband and beagle/basset hound. A local TV co-host, she is the parent representative of the Congenital CMV Foundation and speaks at the international congenital CMV conferences (2008, 2012) co-sponsored by the Centers for Disease Control and Prevention (CDC). Most recently, she spoke at a conference sponsored by the Infection Control Nurses of Connecticut (April '13). Lisa is a part-time history interpreter at Mystic Seaport, a Cornell University graduate, and the author of several books, including her humorous and historical travel memoir, Mystic Seafarer's Trail, where she reveals her desire to become thin and famous like Amelia Earhart so people will listen to her CMV prevention message; and Anything But a Dog! The perfect pet for a girl with congenital CMV, about her disabled daughter growing up beside her tomboy sister and a lazy, old devoted canine (it includes interviews with the country's leading congenital CMV experts and raises funds for CMV research if purchased through the National Congenital CMV Disease Registry and Research Program). In an effort to share the comfort she received from her father's fairytale after her daughter died, she published Surviving Loss: The Woodcutter's Tale, which includes comments on grieving from a Mystic based licensed clinical social worker (it's available as a free e-book at Smashwords). Her other books include the Civil War book and play, Ever True: A Union Private and His Wife, and her children's novel, Ride a Horse Not an Elevator.
Lisa maintains the congenital CMV blog at: http://congenitalcmv.blogspot.com/
A recent newsclip highlights another child disabled by congenital CMV, the ongoing national clinical trial seeking the benefits of a particular treatment, and another mother's work to raise awareness:
Clinical trial puts congenital CMV in spotlight for pregnant women ...

*If interested in highlighting the national treatment trial, please contact: Brenna Anderson, M.D., M.Sc., Women & Infants Hospital of RI, banderson@wihri.org, 401-274-1122 ext. 7456
 
Thank you for your time.

Sincerely,
Lisa Saunders
Mystic, CT 06355

Tuesday, April 23, 2013

When Will Pregnant Women Hear the Truth?










Pregnant women love to hear they shouldn't be changing the kitty litter, but will they love to hear the inconvenient truth about something else they shouldn't be doing? That there is another infection that needs to be avoided when pregnant--one that causes more disabilities than Down syndrome?

Congenital CMV (cytomegalovirus) is the number one viral cause of birth defects, yet few women have heard of this common virus. Why? Because few peope want to tell them they can catch it from their beloved toddlers--that the very act of kissing them on the mouth may just be the kiss of death and/or disability for their unborn child.

I’m a mother who didn’t know about CMV prevention until it was too late for my daughter Elizabeth (I ran a daycare center for young children and had a toddler of my own). Elizabeth was born severely disabled by congenital CMV in 1989. The moment I saw her, I felt a stab of fear— her head was so small, so deformed. The neonatologist said, “If she lives, she will never roll over, sit up or feed herself.” He was right. By her 16th birthday, Elizabeth had survived several bouts of pneumonia, seizures and major surgeries. Weighing only 50 pounds, she looked odd to strangers, but her cheerful, soul-capturing smile made her lovely to my husband and me. Two months later, she died during a seizure.

I am the parent representative of the Congenital CMV Foundation and have spoken at two international Congenital CMV Conventions organized by the Centers for Disease Control and Prevention (CDC). After my first talk in 2008 in Atlanta, GA, mothers approached me afterwards holding their young children wearing hearing aids, or pushing them in wheelchairs. They all wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"

Fewer than half (44%) of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) in 2007 reported having counseled their patients how to prevent CMV infection despite these figures from 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 (See: http://www.cdc.gov/cmv/index.html).

According a 2006 survey reported in the article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," of the 643 women surveyed about their CMV awareness, only 22% had heard of it and most of those could not correctly identify modes of CMV transmission or prevention.

Why don't OB/GYNs routinely warn their patients? An OB/GYN quoted in FitPregnancy magazine (June/July '08) said, "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.”

In addition, many OB/GYNs don't realize the prevalence of congenital CMV. In the article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” Drs. Cannon and Davis state: “The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed.”


"Primary infection during pregnancy accounts for over 90% of severely affected babies and approximately 75% of women with a primary infection during pregnancy acquire CMV from their own child under two years of age,” said Stuart Adler, M.D., Professor of Pediatrics, Microbiology and Medicine and Director of Infectious Diseases at the Children’s Medical Center, Virginia Commonwealth University Medical Center. Dr. Adler has specialized in CMV infections among women and children for over 28 years and has published extensively on this topic.

Despite these statistics, according to the CDC, "CMV does not spread easily. Less than 1 in 5 parents of children who are shedding CMV become infected over the course of a year...In the United States, approximately 30-50% of women have never been infected with CMV. About 1-4 of every 100 women who have never been infected with CMV have a primary (first) CMV infection during pregnancy. About one third of women (33 of every 100) who become infected with CMV for the first time during a pregnancy will pass the infection to their infant."

The direct costs of caring for CMV-disabled children are estimated at $1-$2 billion annually.

Between 50% and 80% of adults in the U.S. are infected with CMV by 40 years of age. During pregnancy, there are steps one can take to reduce changes of contracting CMV, such as talking to your doctor if you expect to receive a blood transfusion. Most blood banks don’t screen blood for CMV.

Daycare workers and mothers of young children should take these special precautions:

  1. wash your hands thoroughly after contact with urine or saliva
  2. avoid oral contact with saliva or objects covered with saliva (such as cups, pacifiers, toys, etc.)
  3. talk with your doctor about whether you should continue to work in a day care center.
  4. 4. Clean toys, countertops, and other surfaces that come into contact with children’s urine or saliva

I am asking the public for advice on how I can reach people who work in daycare centers or have a child enrolled in one. Some centers post flyers mentioning the need for careful hygiene when working with young children--but not many. Until OB/GYNs (and pediatricians) make it a standard practice of care to educate women of childbearing age on CMV prevention, I feel the public needs to do something.

Mothers of children affected by congenital CMV are so upset the medical community didn't find a way to warn them of the precautions to take so they could make up their own minds if they still wanted to share a mouth kiss with their toddlers or work in daycare centers with children under the age of two and a half. I believe knowing the precautions to take after wiping a runny nose or picking up toys covered in saliva can help prevent the kind of suffering my daughter Elizabeth endured.
The medical community is working on a vaccine and there is also a study currently underway to see if receiving CMV hyperimmune globulin (HIG) will prevent congenital CMV infection. They are looking for women who would like to be tested for the disease.

I received the following e-mail from the Study Chair for a 14-center NICHD Maternal Fetal Medicine Units Network (MFMU) randomized clinical trial testing the efficacy and effectiveness of hyperimmune globulin for prevention of congenital CMV in women with primary infection:

Cytomegalovirus (CMV) is the most common congenital infection, with a prevalence of approximately 1% in the United States, translating into 44,000 congenitally infected infants per year. A substantial proportion of these 44,000 infants will die or suffer permanent injury as a result of their infection. The severity of congenital infection is greatest with primary maternal CMV infection.

Currently, there is no proven method of preventing congenital CMV infection, and the approach to primary maternal CMV infection in the United States is haphazard and ineffective. One small, non-randomized study suggests that maternal administration of CMV hyperimmune globulin may reduce the rate of congenital CMV infection following maternal primary infection.
or contact:
Brenna Anderson, M.D., M.Sc.
Women & Infants Hospital of RI
101 Dudley Street
Providence, RI 02905
401-274-1122 ext. 7456

For more information about congenital CMV:

CDC site on congenital CMV: http://www.cdc.gov/cmv/index.html

CDC brochure discusses blood transfusions and working with young children: http://congenitalcmv.org/CDCbrochure.pdf

An article written by doctors I found very enlightening:

I am listed on the Congenital Cytomegalovirus Foundation site along with the doctors who specialize in Congenital Cthey are all willing to speak to you. Their e-mail address is linked to their name: http://www.congenitalcmv.org/foundation.htm

About me, Lisa Saunders:

Lisa Saunders lives in Mystic, Connecticut, with her husband and beagle/basset hound. A Cornell University graduate, Saunders is the parent representative of the Congenital CMV Foundation and speaks at international congenital CMV conferences ('08,'12) sponsored by the Centers for Disease Control and Prevention (CDC), Congenital CMV Foundation, and the National Congenital CMV Disease Registry. Most recently, she spoke at a conference sponsored by the Infection Control Nurses of Connecticut (April '13). Lisa is a consulting writer for Rockland Community College of New York, part-time history interpreter at Mystic Seaport, and the author of several books, including her humorous and touching memoir about her CMV-disabled daughter growing up beside her tomboy sister and a lazy, old devoted canine, Anything But a Dog! The perfect pet for a girl with congenital CMV. the book includes interviews with the country's leading congenital CMV experts and raises funds for CMV research and parent support if purchased through the The National Congenital CMV Disease Registry and Research Program. Saunders also raises congenital CMV awareness in her humorous and historical book, Mystic Seafarer's Trail, where she reveals her desire to become thin and famous like Amelia Earhart so people will listen to her CMV prevention message. In an effort to share the comfort she received from her father's fairytale after her daughter died from complications of congenital CMV, she also published Surviving Loss: The Woodcutter's Tale, which, in addition to raising congenital CMV awareness, includes comments on grieving from a licensed clinical social worker (it's available as a free e-book at: https://www.smashwords.com/books/view/283862
Lisa maintains the congenital CMV blog at: http://congenitalcmv.blogspot.com/
See Lisa on her two-minute USA 9 news interview about CMV at: http://www.wusa9.com/video/34235723001/1/Coping-With-CMV
 
To read about Lisa's CMV awareness work along with advice from internationally known CMV experts, visit the Times Herald Record article: www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313
For more information about Lisa's work, visit www.authorlisasaunders.com or contact her directly at saundersbooks@aol.com
 




Thursday, February 7, 2013

Surviving Loss: The Woodcutter's Tale

My new booklet, which is free in its e-book version, includes the short story of my daughter's death from congenital CMV related causes. It is meant as a story for all who have lost someone dear--no matter what the cause.

This full color booklet is ideal for individuals who have experienced a loss and provides professionals a useful method to assist the bereaved. It includes a grandfather’s touching fairytale that has the ability to soothe the aching hearts of children and adults as it reveals the process of healing after the death of a loved one. The afterword, written by Julie Russell, LCSW, seeks to help individuals understand the grieving process and to return to a life with purpose and meaning.

Lisa Saunders, the author of Surviving Loss: The Woodcutter’s tale, discusses the ways in which she is trying to move forward to honor the memory of her deceased daughter--by raising awarness of congenital CMV (cytomegalovirus) and how to prevent it.

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 the author’s experience finding purpose, or in the portion on understanding and coping with the natural process of grief.

This poignant combination provides a message of hope and is a tool for healing.

FREE e-book available at: https://www.smashwords.com/books/view/283862

Softcover booklet available: http://www.amazon.com/Surviving-Loss-Woodcutters-Lisa-Saunders/dp/1482315505/ref=sr_1_1?s=books&ie=UTF8&qid=1360589786&sr=1-1&keywords=surviving+loss%3A+the+woodcutter%27s+tale


INTRODUCTION

My daughter, Elizabeth Ann Saunders, died unexpectedly during a seizure at the age of 16 on February 9, 2006. Although her epilepsy had gotten out of control as she aged, my husband Jim and I never thought it would be the end of her—though she was beginning to suffer terribly from the effects of the constant seizures. In the last two months of her life, I had begun privately praying that if God wasn’t going to heal her, that He would take her home. I couldn’t confess that to Jim because I thought he would be horrified I would pray for such a thing.

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
 
 
The Woodcutter’s Tale
 
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.
 
It came to pass that the countryside was ravaged by sickness accompanied by high fever that caused many to perish. Stefan was stricken and shortly became very ill.

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.
 
The Princess herself picked Stefan up to carry him to the carriage. As soon as the Princess lifted him, Stefan started to look better.
 
The Princess placed him in the coach seat opposite her and the coach drove off, leaving the couple waving goodbye with tear-stained faces.
 
Life was not the same in the little cottage, although the family seemed closer together then ever before. Their shared grief was an invisible weight pressing upon their shoulders, made bearable only by the sharing.
 
Three days after Stefan’s departure, a white dove appeared and made a nest in their thatched roof.
 
Strangely, the family felt comforted by the presence of the dove that never left their roof.
 
Hans always looked for it when he returned from his wood-cutting forays into the forest.
 
Hilda and Matilda often looked up when they were doing their outdoor chores to see if the dove was still there, and to experience the sense of consolation and protection, which seemed to emanate from the dove.
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.  
 
Finally, stricken with years, the old couple became weaker and weaker and sensed that they both were going to die.
 
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.
 
As the coach drew near, they saw a smiling Stefan inside, dressed in shining white garments and looking every inch a Prince.  
 
“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. 
 

THE END

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


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.


AFTERWORD

by

Julie Russell, Licensed Clinical Social Worker

 
The Woodcutter’s Tale demonstrates the stages of grief while highlighting the continued love the couple has for their child.  It is important to understand the stages of grief to gain insight into the steps one can take to assist in healing, or to know when one may need additional help by a professional. 

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 julie.lcsw@yahoo.com. 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

 

In addition:

·        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:

 http://congenitalcmv.org/CDCbrochure.pdf

 

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:

congenitalcmv.org/foundation

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




 

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, saundersbooks@aol.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 julie.lcsw@yahoo.com. Her website: www.julierusselllcsw.com