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Elizabeth and CMV
  
Elizabeth Ann Saunders, born with congenital CMV (cytomegalovirus) Elizabeth and her pets are featured in the book, Anything But a Dog! For excerpt and purchasing details, see: http://anythingbutadog.blogspot.com/
     
CMV Congenital CMV PowerPoint by Saunders.ppt
“Elizabeth: Forever Sweet Sixteen”
by
Lisa Saunders
The moment Elizabeth was born in 1989, I felt a stab of fear. My immediate thought was "Her head looks so small — so deformed."
The neonatologist declared, "Your daughter has profound microcephaly — her 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) — a virus that may have no symptoms for the mother, known as a "silent virus," or it may present itself with mild to severe flu-like symptoms to a mother during pregnancy.
The Centers for Disease Control and Prevention (CDC) estimates that about one in 150 children is born with CMV infection and approximately one in 750 is born with or develops permanent disabilities because of it. CMV is the #1 viral cause of mental retardation and hearing loss—more common a cause of disabilities than Down syndrome.
How and why did I catch this virus that I had barely heard of? The CMV literature stated that women who care for young children are at a higher risk for catching it as preschoolers are the majority of carriers. The virus is spread through bodily fluids such as saliva and urine. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them. Hands must be washed after diaper changes, wiping runny noses, etc. 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 also ran a licensed daycare center in my home. I felt sick at what my ignorance 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.
It took 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 my husband Jim, family, friends, the Book of Psalms, and a couple of prescription sedatives! We were eventually able to move ahead as a happy, "normal" family. Even strangers played a part in lifting my spirits. One afternoon, struggling with Elizabeth’s wheelchair through the muck of an upstate New York county fair, I was feeling depressed because children were staring at my little girl who could not even hold up her head. “She looks funny,” kids said loudly to their embarrassed parents. In the midst of my dark thoughts, a heavily tattooed carnival man, who looked like he had been drinking for years, ran from behind his game booth and came right up to me. My alarm melted into tears of gratitude when he handed me a large, brown teddy bear from his stash of prizes and said, “I want your daughter to have this.”
Sixteen years after her birth, I awoke feeling so proud of Elizabeth on her birthday. She had fought hard to stay with us in the land of the living, surviving several bouts with pneumonia, seizures and surgeries. Weighing only 50 pounds, she looked odd to strangers as a result of her small head and big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes and soul-capturing smile. Although Elizabeth was still in diapers, and could not speak or hold up her head, she was a very happy little girl with a love of adventure— long car rides being one of her favorite activities. She especially loved going to school and being surrounded by people, paying no mind to the stares of other children who approached her in public. She smiled at anyone who would stroke her hair or cheek. When she wasn't busy, she sat propped on our couch watching cartoons with a big, lazy dog we got from an animal shelter.
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!"
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. We called 911."
Jim and I met her ambulance at the hospital. The medical staff did all they could, but she was gone. After they unhooked her from all the monitors, we took turns holding her. While holding Elizabeth on his lap, Jim looked down into her partially open, lifeless eyes and cried, "No one is ever going to look at me again the way Elizabeth did."
It has been four years since we lost Elizabeth. At times I miss her so much I can barely breathe. Yet at other times, I feel happy for her — never again will I see the terror in her eyes as a seizure begins and she can't catch her breath. Elizabeth is now forever "Sweet Sixteen."
Today, my sorrow is gradually being replaced by a passion to prevent others from going through what Elizabeth did. Although congenital CMV is more common that Down syndrome and can be prevented through careful handling of saliva and other bodily fluids, OB/GYNs still do not warn women of childbearing age about the infection and how to avoid it.
To learn more about CMV prevention and emerging treatments, see pictures of Elizabeth with her devoted old dog, or to read an excerpt of my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV, visit my Web site at www.authorlisasaunders.com
About the Author:
Lisa Saunders is the Campus Communications writer for the State University of New York at Rockland, the author of several articles and books, and is the parent representative of the Congenital CMV Foundation and a STOP CMV area rep.
Lisa’s second daughter, Elizabeth, was born severely disabled as a result of congenital CMV (cytomegalovirus). As a result, spreading a CMV prevention message is Lisa’s passion. She writes to politicians asking for a CMV education campaign, interviews doctors for CMV articles, and connects with mothers around the world through Youtube. Twitter, Facebook, and LinkedIn. In an effort to warn the general public about CMV, she wrote the humorous book, Anything But a Dog! The perfect pet for a girl with congenital CMV, which raises funds for CMV prevention and parent support if purchased through the National Congenital CMV Disease Registry.
Lisa’s CMV articles have been widely published in newspapers, magazines and in online publications, and she offers Elizabeth’s life with CMV as a story idea to magazine and newspaper editors. To reach women of childbearing age directly, she posts CMV warnings on social networking sites like momslikeme.com, regularly posts CVM information and resources on her blog, http://congenitalcmv.blogspot.com/, and makes her CMV PowerPoint presentation available for public viewing through her Web site.
A public speaker, she has presented her CMV story on television, radio, at the Centers for Disease Control and Prevention (CDC), to nursing organizations, colleges such as Johns Hopkins, and at libraries, where she runs “Open Mic Nights” to attract a general audience to hear her prevention articles.
A graduate of Cornell University, her other published works include the children’s novel, Ride a Horse, Not an Elevator; book and play, EVER TRUE: A Union Private and His Wife and the free e-book, How to Get Published, which includes an excerpt of her book proposal that landed her a publisher for Anything But a Dog!
Lisa lives with her husband, Jim, and their pesky Beagle/Bassett hound, Bailey. You can reach her at saundersbooks@aol.com or visit: www.authorlisasaunders.com
Elizabeth's Obit: http://www.nyjnews.com/obits/Obit1.php?pid=1925690&fulldate=2006-02-11
To see a PowerPoint of her life, which includes a congential CMV graph and her grave marker, see: Elizabeth_Power_Point.ppt
To meet other children born with congenital CMV, see cmv-poster 1.61mb.jpg format
Elizabeth Ann Saunders
Dec 18, 1989 – Feb 9, 2006, Forever "Sweet Sixteen"
A few days after Elizabeth died, I was given a mass card/booklet. Flipping through its pages in the middle of the night, hoping to find some comfort, I opened it to a page containing this poem by an unknown author:
I’m Free
Don’t grieve for me, for now I’m free.
I’m following the path God laid for me.
I took God’s hand when I heard the call;
I turned my back and left it all.
I could not stay another day
To laugh, to love, to work or play.
Tasks left undone must stay that way,
I found that place at the close of the day.
If my parting has left a void,
Then fill it with remembered joy.
A friendship shared, a laugh, a kiss.
Ah yes, these things, I too, will miss.
Be not burdened with times of sorrow,
I wish you the sunshine of tomorrow.
My life’s been full, I savored much,
Good friends, good times, a loved one’s touch.
Perhaps my time seemed all too brief;
don’t lengthen it with undue grief.
Lift your heart and share with me—
God wanted me now, God set me free.
I held the paper and cried. I truly believed Elizabeth was letting me know how grateful she was to be free.
Elizabeth’s gravestone red and in the shape of a heart. It will bear sketches of a rose, dove and butterfly. The following verses will be placed on the back of her stone: “I will dwell in the house of the Lord forever” (Psalm 23:6) “Then the lame man will leap like a deer, and the tongue of the mute will sing” (Isaiah 35:6)
My father, knowing how much reading relieves some of my grief, wanted to write something too. He sat down with pen and paper and starting laboring over a fairy tale (something he has never done before). He wasn’t satisfied with the way it was coming out so he decided to start over. Suddenly he felt as though a spirit came over him and out of his pen came a story that arrested my soul.
THE WOODCUTTER’S TALE
by Richard W. Avazian
Illustrated by Marianne Greiner
Once upon a time long, long ago in a far-away land lived Patrius, a woodcutter, and his wife Matilda. They had a 19-year-old daughter, Filia 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. “Patrius, Matilda, 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. Patrius 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.” Patrius 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, Patrius and Matilda 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. Patrius always looked for it when he returned from his wood-cutting forays into the forest. Matilda and Filia 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, Filia 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. Patrius said, “Let us go outside, bring our bench and sit on it, hold hands and look at our dove.” Matilda 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, Patrius and Matilda looked back to see if their dove had returned. But the dove, no longer being 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.
P.S.S. Many mornings from our picture window I see a dove resting upon our front yard.
To see the story with illustrations, open Woodcutter with sketches final version.doc
Links with Elizabeth's story: Mommage: Elizabeth's Story... Awareness and Prevention of CMV http://www.cureepilepsy.org/psas/elizabeths_story.asp
http://www.recordonline.com/apps/pbcs.dll/article?AID=/20061018/LIFE/610180313/-1/LIFE01 (The Silent Virus that Silenced Elizabeth) http://www.childrensdisabilities.info/parenting/elizabeth.html
The following was writen by her family for her funeral:
The following is dedicated to Elizabeth: With all my love, Daddy ELIZABETH -- FOREVER SWEET 16 Our daughter Elizabeth was the sweetest person I have ever known. She had a way of capturing my heart. When she smiled, her countenance became radiant. Whenever I came home from a hard day?s work, she would always greet me with a smile that never failed to lift my spirits. When I held her, she emitted a beautiful, peaceful aura that blessed me immensely. She enjoyed being around people, the more the merrier. Elizabeth loved everybody! Other things she enjoyed were simple pleasures that most people take for granted, such as being carted around in her stroller or wheelchair, going for car rides (she loved to gaze out the window), being held, or just having her hair or cheek touched. Elizabeth enjoyed all kinds of music and would sing in her own unique way. She loved going to the mall and taking in the latest action movies. Lizzie was a tough critic, though. If she didn?t like a movie, instead of giving a ?thumbs down?, she would simply yawn loudly. Lizzie helped me to root for our favorite team, Notre Dame. She got a kick out of watching my reactions to all the action during the football game. In short, she was a wonderful companion. To us, Elizabeth was so beautiful. She had gorgeous blue eyes and beautiful thick hair that became curly in hot and humid weather. More than that, she had a beautiful and peaceful spirit about her. Everyone who had the opportunity to get to know Elizabeth fell in love with her. I always kind of felt she was the teacher's pet at every school she attended. Elizabeth especially loved her Mom and her big sister Jackie, of whom she was so proud. When Jackie and her friends fussed over her, she was so happy. They would take turns brushing her hair or painting her fingernails, and Elizabeth was truly ecstatic. Elizabeth was a real trooper, enduring two major operations, one involving hip surgery and the other spinal fusion surgery to help correct her scoliosis. Much to the astonishment of many doctors, she pulled through each time with flying colors. Of course, when Elizabeth was born, none of the medical specialists gave her much of a chance to live more than a few days. By the grace of God, a series of miracles gave her the ability not only to survive, but to grow and to enjoy life. Her epilepsy resulted in many alarming and scary moments for Lisa and me. But Elizabeth always bounced back, and when she started smiling again, we knew she was her old cheerful self. We believe Elizabeth is now at peace and in paradise with her Lord Jesus Christ. Although we will surely miss her terribly, we are relieved she will no longer have to suffer any pain. Our faith teaches us that she will be given a new and perfect body. We like to think that even now, Elizabeth is singing, dancing and praising God. We look forward to the day we will be reunited with her for eternity. Lisa, Jackie and I wish to express our deep gratitude to everyone that touched Elizabeth?s life. We are blessed to have many wonderful and supportive relatives and friends. Thank you all for coming to help celebrate Elizabeth?s life. May God bless everyone. With love and appreciation, Jim, Lisa and Jackie A letter to Elizabeth from big sister Jackie To my darling baby sister, I can't possibly express how much our time together meant to me. I couldn't have asked for a sweeter girl for a sister. I loved holding you and sleeping next to you. I am going to miss sitting on the couch and watching videos with you and going to the movies. It gives me comfort to know you don't suffer in heaven and that you can probably out sing and outrun me any day. I love you and your precious soul and I wish I could have seen you on your last day. I hope you enjoyed your Christmas books and I am sorry we never got to watch The Polar Express, but, every time I watch it I will think of you. Thank you for passing on your valentine's gift to me. I am going to use it to buy a little Barbie with big blue eyes, perfect eyelashes, and thick brown hair who looks just like you and I will name her Lizzy. Love, Jackie A tribute read at Elizabeth's funeral by my friend Terry Thiry:
Elizabeth had the soul of an angel and the spirit of a true adventurer. To sit with her in your lap and look into her beautiful blue eyes was to experience the tranquility of total innocence and acceptance.
But then to see her complete enjoyment when she was pushed quickly over bumpy sidewalks in her stroller, or was watching an action movie from her favorite vantage point in the very first row of the movie theater? now there was a girl who seemed up for anything.
It's that trait that allowed me to imagine the "secret life of Elizabeth." I mean, I think that she could have been hired as an action/adventure movie critic. If there was plenty of motion, loud sound, and special effects, you would know it was a great movie because Elizabeth certainly squealed with delight. And if a director slowed the movie down with a contrived romance she would let you know about it by yowling in discontent. But what's with her enjoyment of the final credits? That has me stumped. Lisa says that sometimes Lizzie showed more interest and got more pleasure from watching all the names scroll by quickly on the screen than she did from the movie itself. I wonder if she knew what a "best boy," or "key grip" is, 'cause I'd love to know...
And my husband George, he discovered something many people had overlooked. He realized one day that Elizabeth was probably quite the expert on ceiling fans. She could often be found lying comfortably on a blanket on the floor, enjoying the breeze. On occasion, George and Elizabeth would sit together, for quite a while I might add, with both their heads going? and they would be talking, and talking, and talking, about the fan of the moment, (actually George did most of the talking but that was OK by Elizabeth. She was a great listener.) He and I both think that Miss Lizzie wanted to take after her Mom and write a book about their studies one day.
Well anyway, all kidding aside, I?m really glad that I got to know Elizabeth. She was a brave young woman, who accepted who she was and fought to experience every moment she had here with us. Even though I know she will be sorely missed, I can?t mourn her passing because I know she is just beginning a new journey in the hands of God. And I hope that we can all take a cue from Miss Lizzie and find the strength to celebrate her life and enjoy how her presence enriched our own.
Elizabeth's Death by her mother The ambulance rides are now over for Elizabeth. I am lonely without my little buddy, yet I am happy to know she is finally safe from harm. I have felt on edge with worry over her for so long and now I must face the loneliness I'll feel when all you kind folks go home and Jackie goes back to college. Elizabeth's desire to keep us company in our endeavors (she was the only one who would watch Notre Dame football with Jim and endless movies with me) and the way she expressed such appreciation for our companionship, made all the hardships seem barely worth mentioning. We have been somewhat isolated these past several years as we often needed to keep Elizabeth home, for her seizures were getting worse and more frequent in the evenings and early mornings, and it was taking her longer to recover. So having you all here with us brings us great joy. We find much-needed comfort in your friendship. Elizabeth also appreciated all of you. There are so many of you who helped us care for her. She basked in your prayers, your kind words, strokes to her cheek or simply the attention given to her when she was fed or clothed. Though she was considered legally blind, when held closely, she studied the faces of those she loved and expressed such utter joy in the human connection. When Jim held her lifeless body in his lap at the hospital Thursday night, he said,"No one is ever going to look at me again the way Elizabeth looked at me." That is what grieves us the most--the loss of her unconditional love. One of Jackie's painful outbursts the other evening occurred when trying to take a nap in Elizabeth's bed. She cried, "I miss Elizabeth so much. I loved laying down with my arm around her. She helped me go to sleep." Many of you have asked how you can help us. One of my major concerns is for the staff at St. Agatha's group home who helped us care for Elizabeth. They had the traumatic experience of watching her final seizure and her last breath. Please pray that the memory of that terrible moment will be overshadowed by the pleasure that I know God feels over their care for one of his wounded little ones. Also please pray for Jim, Jackie and I that we will be able to fall sleep at night without her company. And finally, please rejoice with us that Elizabeth's suffering is now over and that she has entered into her well-deserved final rest. She will never return to us, but our faith fill us with hope that we shall one day go to her.
One sympathy card I like to ponder is from a woman in my church who finished my first book about Elizabeth the day she died. Laying in anguish upon her bed that night, she suddenly pictured the rose that was mentioned in my story. It stood straight up and was blooming beautifully. She felt like God was showing her that that is Elizabeth now—no longer hunched over and crooked, but lovely, tall and straight.
Reaching out to others also brings me some relief. I miss going to the movies with Elizabeth, so I called a friend and asked if Jim and I could bring her high functioning, mentally-challenged son to see a movie. She, said, “
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