Epilogue II

ELIZABETH...Forever Sweet Sixteen

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)

Elizabeth Ann Saunders

 Dec 18, 1989 – Feb 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.