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"There's no such thing as a boring life." Mark Twain
Elizabeth
 
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Elizabeth Saunders at four with her mother
 
The silent virus that silenced Elizabeth
or

Lisa Saunders, of Suffern, NY, is a freelance writer (www.authorlisasaunders.com). She can be reached at saundersbooks@aol.com.

 

 

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Organizations that help families dealing with disabilities:

www.NATHHAN.com They help with homeschooling and adoption of children with special needs

www.childrensdisabilities.info

If you would like to give to a charity that gives money for epilepsy research, please Donate to CURE
312/255-1801 Elizabeth's story is seen on the CURE Web site at http://www.cureepilepsy.org/psas/elizabeths_story.asp

The following short story, which appears in Lisa'a book, appeared in the "Rockland Review"

 

Little Elizabeth, Riley and the Grandpa Train

 

Although Elizabeth could never have “off the couch” adventures with Riley, she and I had plenty. They all revolved around transportation. I’ve pushed her home from the hospital at four in the morning because I couldn’t reach Jim; I’ve carried her down a snowy mountain with the help of some men when our horse and sleigh ride ended due to some sleigh malfunction; and when Hurricane Floyd roared up the Eastern Seaboard, we really found ourselves in trouble.

Although I knew the hurricane was coming, I was assured by the transportation company our train was still planning to run from New York to Maryland, where Elizabeth, at age nine, and I were going to help Jim make the final move up north. My troubles all started on the platform as our trained arrived in Newark.

"Hey! Can somebody please help me get on the train?” I shouted to the crowd. I didn’t know how I was going to get Elizabeth and myself on board before the train left without us. I was carrying her along with her travel stroller, car seat and our luggage.

A black man in a colorful knit cap came to our rescue and helped me drag Elizabeth’s stuff on board and through the crowded aisles to a seat.

Elizabeth felt warm and cozy on my lap along our southward journey as we watched the winds blow and the rains come down. I took Elizabeth in her stroller to the dining car so I could stock up on cookies and other necessary supplies, just in case we got stuck in the rising waters. The food man, seeing Elizabeth, let me cut in front of everyone. Traveling with Elizabeth did come with some fringe benefits. I asked him not to sell the last yogurt. “That was the only thing Elizabeth can eat if we end up getting stuck,” I told him. He promised he would keep one yogurt just for her.

The water on the tracks grew deeper. We plowed slowly through it, then stopped. We stopped and started several times, as they cleared the tracks of falling trees. Eventually it was announced that we’d be stopped for an indefinite period of time. Signals were down and we could not cross over the bridge, which was just ahead. We were told to remain calm and go to the dining car for free food. From the dining car I heard a woman start to scream hysterically, “What! You have no more biscottis?” A true New Yorker!

Elizabeth, of course, was having a ball. All this stalling meant more time cuddling in my lap. She turned her head up to look at me and smiled contentedly, completely unaware that no one else on board shared her joy. Realizing she was getting hungry, I plopped her in her car seat and asked the bored woman sitting across the aisle to watch her while I went to the dining car.

All the yogurts were gone. There was nothing for her to eat. What if we were there over night?

I felt like a distraught mother in one of those disaster movies, contemplating what perils must be endured to keep her child alive. Suddenly I noticed a woman with an uneaten yogurt on her lap. "Excuse me," I said, "I have a handicapped child, and yogurt is the only thing she can eat. Can I trade my sandwich for that?"

"Of course," she said unhesitatingly.

Another woman overheard us. "Here, take mine, too."

My disaster movie got better as more of these previously apathetic people came forward with their yogurts. One old man, who seemed excited by our predicament, went around taking pictures of our plight. He took a picture of me standing in the aisle with my arms piled with yogurts.

After being stalled for several hours, we began to move. But we got stuck again on a low bridge over a wide body of rising water. The wind blew fiercely and I couldn't help pondering the problem of getting Elizabeth off a flooded train. And the worst fear of all: How would I hold her head above water?

Eventually we reached Baltimore. We were told that it was the end of the line. The train could go no further. We would have to take a bus. Again I was faced with the chore of getting Elizabeth and our stuff through a crowd, this time full of tired and angry people. When the next bus came, I just couldn't plow through the waiting, angry throng in time to catch it. I started to cry. Elizabeth was wet and cold and there was nothing I could do for her.

Seeing my distress, a bus driver, who wasn't headed where I was going, got out of his seat and carried Elizabeth aboard. Fearing he'd just plop her down, assuming she could sit up by herself, I frantically shoved my way through the packed aisle yelling, "Please be careful! She can't sit up by herself!"

I heard a woman yell forward, "Don't worry, I'm holding her up."

Jim was pacing with anxiety when we finally pulled in to the New Carrolton, M.D., station. What should have been a three-hour train trip, took ten hours as a result of Hurricane Floyd.

Elizabeth loved the train ride, but I vowed never to take her on one unless Jim was there to help. I longed for her to have fun adventures, but sometimes, embarking on one just wasn’t practical. So, I wrote her stories so we could imagine together what her life could be like if I didn’t have so many worries. Inspired by the single-engine train that chugged slowly up and down the little used track behind our house, which was visible from Riley and Elizabeth’s couch view, I wrote this tale for Elizabeth:

One day, not so long ago, something very special occurred in a sleepy little village called Suffern; a beautiful spot nestled in the Hudson Valley. Although nothing much ever happened in Suffern, everyone knew about it because it is on the way to New York City. Suffern's trains felt very important rushing people to work in the City in the morning. They sped along the tracks, blew their whistles and screeched, "Get out of my way! Get out of my way! I can't be late! Get out of my way." They wouldn’t stop for anyone who couldn’t get across the railroad tracks in time.

There was also another set of tracks in the village. It didn’t seem to go anywhere in particular, but the Half Moon Railroad Company kept it because it was perfect for the little old Grandpa Train who still lived in the Valley. He was a single-car train and with age, had grown too slow to get workers to the City on time. Wearing his spectacles, he chugged slowly up and down his track getting his exercise.

Grandpa Train felt lonely because most of the townfolk and all of the other trains laughed at him. They didn’t even try to get out of his way because they knew he was too slow to hit them. The City trains taunted him and said, "Just wait. The Half Moon Railroad Company is going to get tired of keeping you, and they'll send you to the Old Train's Home. You'll be melted down and sold for scrap metal!" Naughty boys chased after him and threw rocks at his windows. Even the dogs in town ran up to him and nipped at his hind wheels. At least that's the way it used to be.

There was one dog that came to live in Suffern who was different from the others. His name was Riley. He was a companion dog that wanted nothing more than to lie on the living room couch next to Little Elizabeth and keep her company. Elizabeth was Miss Lisa's daughter. She was slower than other girls and could not walk or talk, but she liked to sit next to people and animals, especially her dog Riley. Even though her arms didn’t work so she couldn’t even pet Riley, he loved her anyway and liked to make her smile by licking her face or thumping his tail up and down against her arm. She laughed out loud when he swished his feathery tail back and forth against her cheek. When Miss Lisa read to them from big picture books, Elizabeth let Riley nuzzle his head in her lap. Riley didn’t care to look at the pictures, so he usually just fell asleep.

Riley's daily exercise was to walk beside Grandpa Train's railroad track with Miss Lisa pushing Elizabeth in her wheelchair. The path was so bumpy Elizabeth's pig tails bobbed up and down, which made her giggle. Miss Lisa knew they were safe on this path because Grandpa Train always passed by slower than usual when he saw Elizabeth. He wanted to make sure Miss Lisa could get her across his tracks in time in case they wanted to get to the other side.

Whenever Grandpa Train chugged up beside them, Riley would ask him, "Do you want to come home with us and rest on Miss Lisa's couch?" (Miss Lisa has a very big couch.)

"Thank you," he rumbled as he chugged along, "but I can’t. I must keep exercising my wheels and keep them moving or I’ll be sent away to the Old Train’s home.”

With each passing day the Grandpa Train looked more tired and worn. Little Elizabeth wanted him to rest on her couch as well. She liked trains. In fact she wished she could ride one into the City, but none of them ever stopped long enough for Miss Lisa to get Elizabeth and her wheelchair on board in time. At least if the Grandpa Train came home with them, Elizabeth could sit beside him on their big couch and Miss Lisa could pull on his whistle.

The path alongside the Grandpa's tracks did have one section that made Miss Lisa a little nervous on their stroll. Miss Lisa, Elizabeth, and Riley had to leave the safety of the path alongside the railroad track to cross the railroad bridge over the Mahwah River. Miss Lisa was scared during their crossing because there would be nowhere for them to go if a train suddenly appeared on the track. Riley didn’t like the bridge either because he had to step carefully to avoid getting his feet stuck in the cracks between the planks. But Elizabeth loved the bridge and giggled and giggled because the planks made her ride extra bumpy.

One day, the unthinkable happened. Poor Grandpa Train just plain wore out - and at the worst time! Feeling like he was going a little too fast for the safety of the town, he applied some pressure on his brakes to slow down. Nothing happened! He panicked. "What's wrong with me?" His brakes just did not work!

He chugged faster and faster towards the village. He was going so fast that the dogs couldn't keep up with him to nip at his wheels. "What am I going to do?" Just as he turned the bend that led to the bridge over the Mahwah River, he was horrified. There on the bridge were his only friends, Miss Lisa, Little Elizabeth, and Riley! They didn't know he couldn't stop. And even if he did blow his whistle to warn them, Miss Lisa would never be able to get Elizabeth off the bridge in time.

He knew in an instant what he must do - even though it meant he would never chug again. Even though it meant he'd be sent to the Old Train's Home and sold as scrap metal. Without thinking twice, the Grandpa Train threw himself off the track. Down the riverbank he went, rolling over and over, landing in a heap at the bottom of the shallow Mahwah River.

Grandpa Train was all twisted and broken. He looked up at his friends who were screaming, crying, and barking--frantic over what they just saw. Grandpa Train blew his whistle in hopes of soothing them. It was so loud it echoed throughout the Hudson Valley, but there was a mournful wail to it. Miss Lisa knew Grandpa Train was in trouble so she tied a note to Riley’s collar and told him to run into the Village and show the note to a grownup.

When Riley reached the main street, Lafayette Theater was just letting out after the matinee. In the crowd Riley spotted Dr. Steel, Half Moon's railroad physician. Dr. Steel pulled the note out of Riley’s collar and read the note that ended with, “Come right away to the railroad bridge over the Mahwah River. Grandpa Train is badly hurt!" Dr. Steel told everyone around what happened and took off toward the River. The crowed felt ashamed for their treatment of Grandpa Train and yelled after him, "We're coming too!"

With the help of the whole town and some chains, Grandpa Train was pulled from the Mahwah River and dragged and pushed to Miss Lisa's house. Fearing Grandpa Train would rust from the river water, Dr. Steel asked Miss Lisa to build a fire in her fireplace. Grandpa train was settled on the couch with a cup of hot chocolate. He began to dry off-- and to feel loved.

Dr. Steel fixed Grandpa Train's brakes and straightened out his metal, wrapping him up in a cast. Dr. Steel assured Grandpa Train that the Half Moon Railroad Company would keep his track operating until he recovered and would never send him to the Old Train's Home. And right then and there in Miss Lisa's living room, Dr. Steel awarded Grandpa Train the Half Moon Medal of Honor. Never before had the Railroad Company heard of a train that loved others more than himself.

While Grandpa Train recuperated on Miss Lisa's couch, Miss Lisa helped Elizabeth pull his whistle. Riley thought the whistle was too loud in the house so he covered his ears with his big black paws.

When Miss Lisa wasn't reading them stories, she took them for walks into the village. They strolled extra slowly so that Grandpa Train, who was still wearing his cast, could shuffle alongside them with the help of his cane, which was carved from a railroad tie. Whenever the villagers noticed that Grandpa Train looked tired, they would tell him to go rest in the gazebo, which was a place of honor, for it marked the spot of John Suffern’s Tavern, where George Washington made his headquarters during the American Revolution.

Never again did the townspeople or their dogs made fun of Grandpa Train. To them he was a hero, much more admired than those fast City trains that wouldn't have jumped off the tracks for any of them.

And the best news of all was that The Half Moon Railroad Company decided that when the Grandpa train was well, they would allow him to take people into New York City again--people like Elizabeth who weren't in such a hurry. People who needed time to get on and off the train. People who were just happy to be going somewhere -- no matter how long it took to get there.

 

  

Elizabeth and the Dog That Understood

 

One morning, shortly after Riley found his final resting place with Elizabeth at the cemetery, I awoke with the sense that the longest chapter in my life was truly over. I reflected on my life with Elizabeth and remembered all the fun we’d had together. I felt so grateful that Riley had come into her life—that she had someone other than her teachers and immediate family who understood her. I needed to somehow put into words Elizabeth and Riley’s “lump on the couch” relationship.

We were visiting Jim’s mother in upstate New York at the time, so while they slept, I sat on her screened-in porch with a cup of coffee and wrote this quiet tribute to their unusual life together:

Elizabeth and the Dog that Understood”

by

Lisa Saunders

There once was a girl who couldn’t walk, couldn’t talk and couldn’t even feed herself. She couldn’t move at all--except to smile. And she smiled about everything! She smiled when her sister brushed her long, brown hair, she smiled when her father pushed her along a bumpy, gravel path, and she smiled when her mother drove her around in the red convertible with the top down. She even smiled when she had her hair cut short so it could be donated to a sick girl who had lost her own. In fact, she smiled so much her teacher gave her a “Best Smiling” award at school.

The girl’s name was Elizabeth and she had cerebral palsy—her muscles just didn’t work.  Everyone liked her because she never said anything unkind, yet no one knew what she was really thinking. She was mysterious! But sometimes Elizabeth wished that she wasn’t so mysterious, that she had a true companion--one who could understand her, or at least sit beside her on the couch to keep her company.

Then one day, Elizabeth’s mother called an animal shelter and told the keeper, “I have a daughter who can’t play with a frisky dog. I would like an older, lazy one who wants to lie on the couch all day. Do you have one like that?”

“Ma'am, I not only have a couch potato here, but he’s the whole sack of potatoes!” The dog’s name was Riley. His owner had left him there because he couldn’t take care of him anymore. Elizabeth’s mother brought him home and patted the couch, letting him know he could jump up on it next to Elizabeth. So he did just that.

Riley was big and hairy. Even though he was only five years old, he weighed 100 pounds. Even though Elizabeth was 11, she weighed only 40! Riley looked like a clumsy old black bear next to Elizabeth, but he was gentle. He knew how to jump on the couch and find a spot without stepping on her.

Although Elizabeth and Riley were very different on the outside, they seemed to be alike on the inside--they both loved to sit on the couch and watch cartoons. The only problem was that neither one could talk, or operate the remote control, so they had to wait for Elizabeth’s family to change the channels.

Riley would curl up next to Elizabeth for hours, and never leave her to do silly things like wash the dishes as her mother did. He didn’t leave her to mow the lawn or do homework. And Riley was happy that Elizabeth didn’t run away from his bad breath. When Riley panted “Hello” in people’s faces, everyone turned away and said, “Yuk,” but not Elizabeth. She wasn’t afraid of his doggy smells. She smiled when his hot breath hit her nose.

But Elizabeth was afraid of the cold--she couldn't keep herself warm like other children who could jump up and down or ask for a blanket. Since Riley had two coats of fur, one short and thick, one longer and shaggy, he wasn’t afraid of the cold at all. One day, the temperature dropped slightly and Elizabeth's little feet began to turn purple. Riley understood what was happening. Without being told what to do, he carefully laid across them. His weight and warmth made Elizabeth feel so good she smiled. Riley was glad--he not only had a couch, but he had someone who needed him. And Elizabeth's family was happy too—she finally had a companion who understood her.

Elizabeth and Riley grew older together on the couch for several years. Then one day, Elizabeth passed away. Riley was never truly happy after that and he passed away a year later. His ashes were spread over Elizabeth’s grave—now they are forever keeping each other company.



Epilogue II

 

ELIZABETH...Forever Sweet Sixteen

 

 

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Elizabeth enjoys her big sister Jackie on an evening stroll along the boardwalk –

it would be Elizabeth’s last family vacation

 

 

Elizabeth’s struggle is over. She was declared dead at Nyack Hospital on Thursday evening, February 9th, 2006 at 6:35pm. She was 16.

And a few months earlier I awoke feeling so proud—it was Elizabeth's birthday. She had survived an amazing ordeal to make it to Sweet Sixteen. I recalled her birth and how the doctors had given her only a few days at best, her countless bouts with pneumonia, seizures, two major operations and several smaller ones. How hard she fought to stay with us in the land of the living!

But unfortunately, Elizabeth did occasionally suffer—especially as she aged. Tight muscles and difficult-to-control epilepsy were taking their toll. An orthopedic surgeon warned me that her curving lower spine would interfere with her intestines. And I often received calls, "Elizabeth is having seizures,” or “Meet her at the hospital--we had to call 911."

During one of those trips to the emergency room, a kind lady lying next to Elizabeth told me, "She's too pretty to be having them seizures!" I agreed with her and often told Elizabeth I thought so too. Yet the epilepsy medication’s effectiveness was wearing off.

I had heard that it is rare to die from a seizure, but how could she survive this continued torment? She had turned blue many times during these episodes. And yet, here she was, our lovely little girl--Sweet Sixteen at last! We didn't plan a party because life was so uncertain--we were always canceling events due to the unpredictability of her seizures. But we had fun anyway. We took her for a long winding ride through the mountains to the merry-go-round at Bear Mountain State Park. She delighted in looking out the window during the car ride with Jackie, Jim and me. Of course she paid no mind to all the children who stopped to stare at her at the carousel house. She reveled in being the center of attention (thankfully she was unaware of the kind of attention). She was just happy to be alive and surrounded by people.

Less than two months later, I dropped Elizabeth off at school, as usual. I held her little 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, preoccupied with Elizabeth’s terrible seizure from the night before.

Later that day, while walking in downtown Suffern, my cell phone rang. “Mrs. Saunders?” asked her therapist.

I cried, “What! Is Elizabeth O.K.?”

“Oh yes, she’s fine! She had a great day strolling through the Nanuet Mall. She laughed out loud. I never heard that before! And she ate ALL her strawberry Ensure during lunch. You’ll need to send in some more. I just called because I wanted to discuss the hand splints you wanted to order…”

Relief! Elizabeth had a good day! Later, just before picking her up, I received another call: "Mrs. Saunders, Elizabeth had a seizure and she's not breathing. We called 911. They are taking her to Nyack Hospital."

I froze, not sure if I believed them. Elizabeth stopped breathing all the time—and she always came back. Just then, my mother called. “I’m taking you to the hospital now.” Enroute, I called Jim.

Police lined the way to the hospital and an ambulance whizzed past us. Could that be Elizabeth?

It was. A nurse came to speak to me before I went into Elizabeth’s room. She said, “Mrs. Saunders, Elizabeth’s not responding.”

“What does that mean! Is she dead?” I demanded to know over and over as I stood outside of her room, too afraid to go in and look at the team working on her.

Again, all the nurse would say was, “She’s not responding.”

I worked up the courage to see for myself. A doctor greeted me. “She’s not responding.” How long were they going to work on her? Were they trying to bring her back from the dead only to endure life in a coma? Before I had time to contemplate more suffering for Elizabeth, I overheard the doctor say to another, “Dead.”

Someone held me as I screamed; I have no idea what, over and over. She couldn’t be “Dead!”

I was given a chair while I watched them unhook her from the monitors. I begged them to put her in my lap. I would hold her and she would come back--like she had so many times before. Her eyes were partially open, like they often were when deeply asleep. Perhaps if I held her long enough, close enough, she would once again look into my eyes and smile that smile that seemed to say, “I feel better now. I love being alive—and I love being with you.”

Elizabeth felt cool to my touch, but she was often cold. Many a night I lay close beside her in an effort to warm her.  So I rubbed her limbs and held her tightly. It wasn’t working. She grew colder—and her face turned white.

Just then, Jim walked through the door, looking very grave. “She’s dead,” I cried. I had to say it bluntly so we could both believe it. Yet somehow, I still didn’t. He sat beside me. We took turns holding our 16-year-old baby, even rocking her, for about three hours. She looked so sweet and relaxed. Merely asleep. Jackie happened to call from college, unaware we were holding her dead sister. Unaware that our family would now have an empty seat on the couch. I was forced to tell her right then and there that her little sister had died. Her boyfriend Paul, who was standing next to her, said, “I’m driving you home now.”

While holding Elizabeth, my husband looked down into her 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 like Elizabeth did. My parents, pastors and friends gathered around us to grieve as well.

Gradually Elizabeth's eyes began to sink--a sign that her soul had left her little body. A sign that she had gone to God and was truly dead to us. We couldn't bear to look at her anymore, so with great reluctance we placed her on the gurney and we left her alone in the room. It was with the sick realization that when we were safely out of sight, a crew would zip her into a body bag.

How odd it was to walk out into the dark, cold parking lot of the hospital without our girl. How does one leave behind a part of their soul? Elizabeth was part of my body as well--I had carried, fed, nurtured, smiled and cried with her for over 16 years. And I still worried about her—what if she had another seizure and rolled off the narrow gurney? I just couldn’t comprehend that she was really dead. That it was truly over.

My parents drove us home and from my cell phone I called several friends--funeral arrangements began.

Jim and I entered our silent home. All over lay Elizabeth’s diapers, medication and cast off bed clothes from that morning.  “I can’t look at all her things!” Jim cried.

While Jim brought firewood up and down the basement stairs (I have no idea why), I hurriedly gathered Elizabeth’s belongings from the common rooms and boxed them in the garage. Some things, like her toothbrush, went in the trash. Later I saw Jim digging through the garbage. He sobbed, “I can’t bear to see her little things thrown away!”

A friend came over late that night and helped me clean the house. Something I had done for my friend Roanna when her daughter Rachel died. As fragile as Elizabeth’s life had always been, I never dreamed I would need the same help someday. At around 1:30 in the morning, we received a call from an organ donor organization. They wanted to take some of her body parts! They requested bone, heart valves, and retinas. We couldn’t bear to part with her eyes, her one truly beautiful feature, but we said yes to the bone and heart valves. I wanted to say “no,” but how could I? She herself had received bone particles from a donor for her spinal fusion surgery. Another heart-broken family has said “yes” so someone like Elizabeth would have a chance at a better life.

How odd and unforeseen this all was—only a few days earlier Elizabeth happily endured my cutting 10 inches off her beautiful, thick brown hair so she could donate it to Locks with Love, a charity that makes wigs for ill children. I never dreamed that within a week I’d be letting another organization have her heart! 

Jackie arrived home from college shortly thereafter. Unbeknownst to me, Paul had driven through a terrible snow storm to get her there.

Of course I never slept that night. Then at 6 am I received a call that gutted me. “Mrs. Saunders, Elizabeth is in the organ retrieval room and we need to know about the scar on her chest.” (They probably wondered if she had some sort of heart defect). I explained her mole removal procedure and hung up. I sat in horror picturing my baby was alone with strangers, being cut open at that very moment. In my head I knew she was no longer attached to her flesh, yet as her mother who had protected her body for so many years, it was too much to picture.

At the funeral home that morning, we brought a little dress for Elizabeth that she never could have worn with her scoliosis jacket. She would even get to wear underpants—something that would have been impossible during her life. She would look every bit a princess—even though we opted for a closed casket. I said “no” to embalming. No more procedures on our girl.

Her wake was to be held on Sunday—forecasted to be the blizzard of the year. Everyone worried about getting Elizabeth’s body into our church for calling hours—everyone, that is, except me. For so many years snow storms heightened my anxiety. What if we had to get Elizabeth to the hospital? More than once, we had found ourselves in perilous situations.

But now snow could no longer hurt Elizabeth—she was finally safe. It didn’t really matter whether or not her body arrived where it was supposed to. Inwardly I smiled—it was beginning to sink in that Elizabeth’s suffering was over.

On Saturday, the day her coffin would be closed for good, we were invited in to view her body once more. Suzanne from the funeral home called to ask how she should do Elizabeth’s hair. Upon hearing my complicated description of where to put her pony tail and barrette, she asked, “Would you like to do her hair?”

“Wouldn’t we find that a little bit…creepy?” I asked.

“No, I don’t think so. I felt honored to do my mother’s hair.”

After discussing it with Jackie, she decided she would do the honors for her sister.

Grief hit afresh upon entering the viewing room. There, in the place that should only be reserved for the old, lay our little girl and Jackie’s only sibling.

Calming down, we approached her casket. She looked natural--asleep and at rest. We took hold of her cold hand—still clenched into a fist from the cerebral palsy.  There would be none of that typical death pose of one hand lying atop another. Yet seeing her look the same was comforting. She looked so good in fact, that once Jackie did Elizabeth’s hair, we called in friends and family to rejoice with us at her peaceful appearance.

When we were left alone once more, we drew close to Elizabeth’ body to say our final goodbye. Suddenly Jim collapsed, sobbing at our feet. Oh how were we going to survive such a loss?

That afternoon the pastors came over to help us plan her calling hours and funeral—all to be held at our church. Unable to function anymore, I was grateful for my friends who came to answer phones, accept flowers at the door, and set out the growing pile of food. Overwhelmed with grief, I refused to make any funeral decisions--Jim and Jackie took over. Lying on the couch I sobbed and said things like, “Maybe she really wasn’t dead when we approved the removal of her heart valves.”  I have no idea what other crazy things I uttered.  In the evening more friends came to our home to pay their respects and some to stay with us. Jackie’s best friend Amy arrived from college. I called to her from my darkened bedroom—too weary to get out of bed. Expressing her sympathy, she handed me a long, beautiful scarf she had just completed—her first one. “You taught me how to knit so I want you to have this.” How sweet of her! Jackie turned to her, hugged her, and cried, “You’re my sister now.” I rose out of bed to hug the girls and cry with them. How wonderful my life was—although I had lost one of my beautiful daughters, there was now another willing to be Jackie’s sister.

When I opened the blinds Sunday morning, the day of Elizabeth’s calling hours, I saw the weather man had been right--a true blizzard raged on before me. A couple of feet of snow lay on our driveway and street (always the last in the neighborhood to be plowed). As we pondered the amount of snow that needed to be moved, neighbors arrived and began to shovel. No ringing our doorbell to ask if we would like that done—they just started right in. Again I smiled to myself. As usual, God was using others to help us out of a bind—something we had seen over and over again during Elizabeth’s eventful life.

Unable to remember how to dress, Jim threw me together in time to leave for the church. When we pulled up ahead of Elizabeth’s body, we saw there were no parking spaces shoveled and church members, some in their 60s, were frantically shoveling a path for Elizabeth’s body. Even in death Elizabeth provided excitement! Eventually friends with snow plows came to the rescue.

Despite the worst blizzard of the year, the turn-out for Elizabeth’s wake made me realize that her life did indeed affect those around her. Many friends drove for hours to honor her life and join us in our sorrow. I had once imagined that people would secretly be relieved she was dead—that they would no longer have to ponder the life of a crippled, severely retarded little girl with a funny shaped head and buck teeth. Instead I saw genuine grief and heard many stories of how her smile, despite her suffering, had given them something wonderful to ponder. We were handed the first of many sympathy cards.

Late that evening, still too sick with shock to find sleep, I wandered around the house. I decided to read the sympathy cards for something to do. At around 3:30 in the morning, hours before her funeral, I opened the first one—a mass card. Breathless at the title of a poem included within the pages, I wondered if Elizabeth had crossed the great divide to speak her first words ever to me:

 

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.  

The sun shone bright that morning--the day of Elizabeth’s funeral. Her adult-sized coffin rested at the front of the church as the pastors started the service with a statement made by Jesus: “whoever humbles himself like this child is the greatest in the kingdom of heaven.’” Matthew 18:4

                “How appropriate and comforting,” I thought. “Elizabeth must be very great in the kingdom of heaven since few are humbler than she was!”

                Then friends and family greated the audience with songs, letters, ours and their own –some making us cry, others making us laugh.

One friend Margaret played a slide show of Elizabeth that she had shown at her calling hours the day before. She made several versions for us, and the one shown the day before was to the song “Puff the Magic Dragon,” (a song I would rock Elizabeth to). Viewing it the first time, I cried afresh at one of the lines that made me tear when I sang it to her in my rocking chair: “One grey night it happened, [Lizzy Saunders] came no more. And Puff that mighty dragon, he ceased his fearless roar.. His head was bent in sorrow, green scales fell like rain …Without his life-long friend, Puff could not be brave, So Puff that mighty dragon sadly slipped into his cave.” I felt like slipping into a cave myself.

                Now in the church, Margaret ran the slide show with the song, “I Can Only Imagine” (A song about life in Heaven by Bart Millard). I gasped as Elizabeth’s happy smiles and her day-to-day life growing up were splashed large upon the screen. Now those smiles would never again be tainted by suffering. The orthotics and wheelchairs in the photos were no longer necessary. She didn’t have to imagine Heaven—she was enjoying it at that very moment.

Following the slide show, the pastor gave his thoughts on Elizabeth’s life. His words rang true to my soul as he spoke of how he recalled the way Jim and I looked at her—at the unconditional love we felt for Elizabeth and how that is the way that God looks at us. “Elizabeth taught us what it means to be human. She was totally depended upon others. God wants us to be humble and depend on him and others…and to help each other when we are weak.”

When service ended, it was time to take our last trip with Elizabeth. On most prior outings, people stared at Elizabeth—and often with a repulsed look of curiosity that seemed to say, “What’s wrong with that kid?” But this time, things were different. The stares that came were out of respect and wonder. A family friend was the chief of police and asked his officers (some off-duty) if they would provide a police escort for a little girl—an honor given only to police and fire officials. It filled me with pride to imagine how onlookers were probably wondering, “What important person is being so respectfully laid to rest?”

                At the cemetery, Elizabeth’s brass-trimmed oak casket looked rather majestic against the piles of snow and lavish flower arrangements. Gusts of wind whirled the snow around us like fairy dust. Birds chirped happily from the trees above.  It was as though we were putting Snow White to her eternal rest. After a few words of farewell, one by one each of us lay a single rose upon her coffin and left. It was truly over. 

                Now the real anguish of missing Elizabeth began. Remaining involved with friends and family and reviewing the sympathy cards are some sources of comfort. Reading how Elizabeth’s joyful soul and courage made a difference in people’s lives made me realize that although strangers had thought her poor and wretched, others felt grateful for the chance to know her. Although some of her days were punctuated by suffering, she had a good life—and so did those of us who cared for her.  Elizabeth not only brought a cheerful presence into the world, but I had a front row seat from which to watch the compassionate side of humanity.

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 Marsalisi

 

Elizabeth’s gravestone will be reddish in color and in the shape of a heart. It will bear sketches of a rose, dove and butterfly (Jackie chose the butterfly because it is the symbol used by the organ transplant organization—she is proud that Elizabeth’s heart valves were donated to help others). 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)

 It has been three months since we lost Elizabeth. At times I miss her so much I can barely breathe.  Evenings can be especially painful as that was our time to cuddle together on the couch and watch movies. Yet at other times, I feel just plain happy for Elizabeth--never again will I see that look of terror in her eyes as a seizure begins and she can't catch her breath. Never again will she suffer the agitation before and after those events. You see, she really was “too pretty to be having them seizures.” And there will be no more surgeries to face with all their possible complications. Elizabeth is truly free. She has received what was promised to her ancestors who have gone before her: “I will gather you to your fathers and you shall be gathered to your grave in peace.” (2 Chron 34:28)

 

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Elizabeth Ann Saunders

 Dec 18, 1989Feb 9, 2006

 

 

 

For the remainder of our days, we will think of our beautiful little girl as forever Sweet Sixteen.

 

Thank you for reading Elizabeth’s story.

Love,

Lisa Saunders

 

P.S.  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.