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Elizabeth and CMV
 
Elizabeth Ann Saunders, born with congenital CMV (cytomegalovirus)
Elizabeth's life is featured in the book, Anything But a Dog!
See: http://anythingbutadog.blogspot.com/ (scroll down for more photos)
"A Christmas Girl Born With Congenital CMV"
Expecting our second child, due to arrive Christmas Eve of 1989, had been a delightful experience. What a Christmas present! But the moment Elizabeth was born on December 18th, I felt a stab of fear. My immediate thought was, "Her head looks so small--so deformed." Before she was twelve hours old, I found out why.
When the neonatologist entered my room the following morning, he said, "Your daughter has profound microcephaly--her brain is extremely damaged 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.
The Centers for Disease Control and Prevention (CDC) states that approximately 8,000 babies a year are born with or develop permanent disabilities because of congenital CMV. It is the #1 viral cause of birth defects--more common than Down syndrome.
How and why did I catch this virus that I had barely heard of? I read the CMV literature. It stated that women who care for young children are at a higher risk for catching it because it is frequently being shed in their saliva and urine. Pregnant women need to avoid kissing them on the mouth and sharing towels and utensils with them. Hands should be washed thoroughly, especially after wiping runny noses, diaper changes and picking up toys that have been in a toddler's mouth.
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 lack of knowledge had done to my little girl. In milder cases, children with congenital CMV may experience a gradual hearing loss, suffer some visual impairment or struggle with slight learning disabilities. But Elizabeth's case was not a mild one.
"My life is over," I thought. I asked God to heal her instantly, but since He didn't, I begged him to kill me and prayed to be crushed to death in an earthquake or struck by lightening. I just couldn't handle raising such an afflicted child, period. Although children are supposed to be a blessing, I felt far from blessed--I felt stricken.
Thankfully my husband Jim's love for Elizabeth far outweighed his grief. He said, "She needs me. I want to protect her from this cruel world she has been born into." He was just like Charlie Brown with that pathetic Christmas tree.
"Oh God," I prayed, "please help me love Elizabeth too."
We took Elizabeth home Friday morning, December 22. Although Elizabeth was no longer at death's door, my horror over her prognosis had not left. But I had to fight through it; Christmas preparations needed to be made. Christmas had not turned out as hoped.
Initially, whenever I looked upon Elizabeth, my heart broke afresh--all I could see was her prognosis. It was as if the prognosis was more of a person than she was. This "prognosis" was like a living creature relentlessly torturing me. I couldn't seem to get past it and see Elizabeth for the sweet little girl she was.
In those early months of Elizabeth's life, it seemed all I could do was rock Elizabeth and read the book of Psalms. Before Elizabeth was born, I really couldn’t relate to the Psalmists. I thought, “Wow, those people are really depressed!” Now, I found comfort in their bitter questions, such as, “How long must I bear pain in my soul, and have sorrow all the day?” Knowing I wasn't the only one despairing of life made me feel less alone.
Elizabeth loved to be held--something my first-born daughter Jackie never enjoyed. Watching Elizabeth rest contentedly in my arms was beginning to bring me pleasure. One day, she looked directly into my eyes and smiled. Our souls had connected--I was hooked! I stopped asking God to kill me. Like George Bailey standing on the bridge at the end of the movie, "It's a Wonderful Life," I too began to cry, "I want to live again!"
Sixteen years later, I awoke feeling so proud. It was Elizabeth's 16th birthday and just one week before her 17th Christmas. Listening to nostalgic songs like, "I'll be home for Christmas," I thought about how hard Elizabeth fought to be home with us for yet another Christmas--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 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 young lady with a love of adventure — long car rides to look at Christmas lights being one of her favorites. She especially enjoyed going to school and being surrounded by people, paying no mind to the stares of "normal" children who thought that, like Rudolph the Red-Nosed Reindeer, 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. We called 911."
The medical team did all they could, but she was gone. While holding Elizabeth 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 Elizabeth did." I knew he was right. No one adored us as Elizabeth did. Although I was happy that she was free from her body, I knew it might be a very long time before we crossed the Great Divide to join her in her new home.
Now, as I prepare to celebrate my third Christmas without Elizabeth, it is with some heartache that I lift the holiday ornaments from their boxes. Elizabeth used to love to sit on the couch with her big, old dog Riley, and watch us decorate. But I have found a way to include her in our Christmas traditions: I open Elizabeth's drawer and pull out her little red and black checked shirt she wore on her last day and hang it over an empty chair placed beside the fireplace. She is my "Tiny Tim" who would say to me if she could, "God bless us, everyone!"
Thank you for reading about my daughter.
Lisa Saunders, Suffern, NY.
www.authorlisasaunders.com
P.S. If you would like to read a light-hearted account of Elizabeth's life growing up beside her tomboy sister and a series of dysfunctional pets, please see my recently published book, "Anything But a Dog!," on the National Congenital CMV Disease Registry book link at: www.unlimitedpublishing.com/cmv/ The book includes the latest in CMV prevention and treatment, and if purchased through the Registry, a percent is donated to research and parent support.
About me: I am the parent representative for the Congenital CMV Foundation (www.congenitalcmv.org/), a speaker at the 2008 Congenital CMV Conference held at the Centers for Disease Control and Prevention (CDC) in Atlanta, and a full-time writer for the State University of New York at Rockland.
Me (Lisa Saunders), with daughters Elizabeth and Jackie in our Christmas dresses
 
  
    
Elizabeth on the couch watching us put up Christmas decorations
Elizabeth's mother,
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.
To see the story with illustrations, open Woodcutter with sketches edits less photos.doc
P.S.S. Many mornings from our picture window I see a dove resting upon our front yard.
Links with Elizabeth's story:
 
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, “Yes!” At the end of each movie we’ve taken him to, he flings his arms around each of us and exclaims, “That was the BEST movie ever! Thank you for taking me!” Like Elizabeth, he can get a little noisy with enthusiasm during the show, but unfortunately, unlike her, he dips his hands in my popcorn!
Jackie said that she too finds comfort in companionship with folks who are outside the mainstream. She befriended a mentally-challenged gentleman who washes dishes in her cafeteria. Over Easter weekend, she had lunch with him, sharing her candy from the Easter Bunny. A few weeks later, she ran into him again in the cafeteria. He proudly yelled to his co-workers, “Hey everybody, this is my friend--she’s nice!” Then he came up close to her and whispered, “What’s your name again?”
Despite working and keeping busy with others, Elizabeth is foremost on my mind. Although my deep longing for her companionship her hasn’t diminished, it helps to picture her alive and well in Heaven. I try to remember that she is not truly dead, just separated from us for a time (though sadly, for a very long time). I cling to an impression a man from my church had the day Elizabeth died. He wrote the following:
Dear Jim & Lisa,
I promised myself I would write this letter once and not go back and make a million changes, so here goes.
I would like you to keep in mind this thought, I believe it is part of the reason God let me see what I did. My next oldest brother Tommy is mentally handicapped, and I’ve always wondered what he would have been like if whatever happened during pregnancy didn’t happen. I would stare at him or a picture of him and just imagine … but I could never see that far past who he was. After becoming a Christian, I learned that someday he would be completely “normal” (how I dislike the word, but I promised no changes). I know God said it, it’s in the Bible. God said it, I read it, it’s true. However, there was one thing Rick Shaffstall said to me once. He said, “I know what you know, now tell me what you believe.” I realized I knew Tommy would be all right, but I don’t think I really believed it.
Many times I would look over at Elizabeth and wonder the same things for her as I did for my brother. My prayers for them seemed to be unanswered, and I started to think about what they would be like in Heaven. Then came the news that ripped open my heart: Elizabeth had died … which, for me, was almost as if my brother had, because now in the midst of tears, pain, trembling and fear, I had to face what I said I believed.
Being a male, my first instinct is fight or flight. There was no way to fight all the emotions hitting me. I couldn’t even pray, so I chose flight. I busied myself doing the pots and pans in the sink. This occupied my mind and calmed me down. While I was doing the pots and not thinking of Elizabeth or my brother, I saw a scene in what I call the “mind’s eye.”
I saw Elizabeth standing almost facing me. She was looking up at this Man who had His right arm around her shoulder. I could not hear anything, but somehow I knew what she was saying. She asked, “Will they be all right?” She was concerned for her family, but not because she wasn’t with you guys on Earth, but because you guys weren’t with her where she is. I did not hear nor did I even sense the response she got, but apparently she heard one, because she smiled and said, “When?” Again, I heard and sensed no response, but Elizabeth heard, because she smiled and twirled and danced in His arm.
My first thought was, “God, if this was from You, I want a sign. I need confirmation if I’m going to repeat this to anyone.” Just then, Janet walked into the room and said, “Elizabeth is probably dancing with Jesus right now.” Wow! God is good! I saw what I saw and God confirmed it. I stood there a moment and realize I knew what I knew, and now, even more importantly, I believed it.
As I write this, I know where Elizabeth is and what she’s like, and I know what the future holds for my brother. I know this and believe it, and I cannot describe the peace and assurance that I have. I pray that God allows you to have not just the assurance of where Elizabeth is, but also the peace that accompanies it.
With God’s love and my prayers,
Anthony MarsalisiAfter Elizabeth died, my freind Patt Chester took Elizabeth's funeral flowers to give to others. She wrote a story from the point of view of the hospital patient who received them:
God’s Newest Angel
P.C Chester
As I lay in my hospital bed awaiting a series of results on tests that were taken, a woman walked into my room. She was wearing a smile bright and wide and had a comforting way when she asked,"would you like to receive communion?" "Yes, I replied." I watched her open the pick and take out my communion. She held it reverently in her hands and recited the Lord's Prayer,and I followed in unison.
After she placed the host on my tongue, our hands met. She seemed to know that I needed someone to hold onto. As she warmly held my hand, I felt that God sent her to me. I was scared and in pain, but I didn't want to talk about my physical health. It was my spiritual health that needed mending and this was the time to begin. The woman left my room and I waited for my tests once again, but a soothing feeling of relief seemed to come over my thoughts.
Later that afternoon, the same smiling woman came back, followed by a young girl that she introduced as her daughter. I watched as the sweet teenager walked over and placed the most beautiful floral arrangement on my night stand. I wanted to cry tears of joy, but held back my tears. "Thank you so much", I said, focusing on their matching smiles. "The flowers are beautiful, how thoughtful of you two", I said gratefully. The woman said, "the flowers are from our friend Elizabeth, she is God's newest Angel. She's in Heaven now, and the joy you feel is from her."
After they left my hospital room I looked at the flowers and softly touched the petals. "Elizabeth", I said, "the flowers are bringing me not only joy, but hope for what lies ahead." I lay in bed gazing over at the arrangement, praying and talking to Elizabeth when my doctor walked through the door. He stood and recited my diagnosis. I was no longer afraid I felt the strength needed to face anything that he said.
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