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From:
Lisa Saunders <[log in to unmask]>
Reply To:
St. John's University Cerebral Palsy List
Date:
Sun, 28 Nov 2004 15:29:02 EST
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I would like to  let you know that my latest book, Riding the Train with 
Elizabeth:  Enjoying life with my handicapped daughter,  has just been released. 
The back cover of  my book reads:   
 

Riding the Train  with Elizabeth 

“God, kill me  now.” 

These are hardly the words of most  new mothers, but that was Lisa Saunders' 
first reaction upon learning that her  daughter was born microcephalic-- with 
an abnormally small brain. Saunders'  perfect life - loving husband, 
comfortable home, healthy first daughter,  steadfast faith--was suddenly shattered. 

Riding the Train with Elizabeth charts the depression and the  joy, the 
support and the solitude, the doubt and the faith of one woman's  emotional 
roller-coaster ride toward learning to accept, love, and care for a  very special 
child. Saunders' story unfolds like pages from a private diary.  Poignant 
memories, as well as humorous anecdotes, highlight a series of yearly  Christmas 
letters, which simultaneously masked Saunders' pain while conveying  her hope for 
the future. Her desire to share her message of hope, as well as her  love for 
Elizabeth, shine through on every page. 
REVIEWS 
Lisa's book reads like a thriller, but in a  personal sense. It does not 
involve so much what happened on the outside as what  is going on inside. That's 
what makes it so different from other books I've read  about special-needs 
kids. It doesn't blame anyone, doesn't whine. It presents an  epic struggle, for 
Lisa, Elizabeth,  and their family -- and God's part in that struggle. 
Mary Potter, Mother of Amanda (who has Rett  Syndrome) and Noah 
I was entertained by her warm and humorous  portrayal of family life and 
inspired by her passionate yet honest ability  to work through a painfully sad 
experience and rediscover the joy of  living. 
Mary Goodin, M. Ed.,  OTR 
No one can read it without questioning how  he or she would deal with the 
most basic questions of life. No one will come  away from reading this book 
without a thorough-going change of  heart. 
David Sisson, Author,  Editor, Archivist, and avid genealogist 
If you are interested  in learning more about Elizabeth, my  other work, or 
ordering, please visit my website at _www.authorlisasaunders.com_ 
(http://www.authorlisasaunders.com/)   The following is a published Christmas story about 
Elizabeth. You are welcome to  republish it.  


The following  story appeared in “Nathan News,”“Celebrate Life,”and “
Challenge  Magazine.” 

"ELIZABETH...A CHRISTMAS  BLESSING"

by

Lisa  Saunders 

Expecting our  second child, due to arrive Christmas Eve, had been a 
delightful  experience.  What a Christmas present!  But the moment Elizabeth was born, 
I felt  a stab of fear.  I knew there was something very wrong.  My immediate 
 thought was, "Her head looks so small...so deformed."  Before she was  
twelve hours old, I was to find out the reason why.


When the  neonatologist came to my room to give me the diagnosis, his manner 
was blunt,  almost cruel.  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 continued  dispassionately, "Her color is bad, her cry is strange, and she 
startles  violently whenever people touch her.  I don't even know if she can 
see or  hear."  He concluded that Elizabeth's birth defects  were caused by a 
virus known as cytomegalovirus--a virus that can but rarely  does cause this 
kind of devastation. 


"My life is  over," I thought.  Despite being a Christian who believes the 
promises of  the Bible are true (such as that God heals and that "all things 
work together  for the good"), I was devastated.  I asked God to heal her 
instantly, but  since he didn't, I begged him to strike me dead.  I just couldn't 
handle  raising such an afflicted child.  Period.  Although I knew through my  
knowledge of Scripture that Elizabeth's arrival was a  blessing, I felt far from 
blessed--I felt stricken.


Thankfully Jim's  love for Elizabeth far outweighed  his grief.  When I 
watched him look at her, the tenderness in his face  showed his compassion.  He 
said, "I want to protect her from this cruel  world she has been born into." 
"Oh God," I  prayed, "please help me love Elizabeth too."

The  time we spent in the hospital was a nightmare.  I dreaded seeing 
Elizabeth's neonatologist.  To him, Elizabeth was a tragedy.  But the nurses who 
cared for her were  positive and kind. "Elizabeth loves to have her head rubbed," 
they'd say, or "She's a  good eater."  Elizabeth was not a bad prognosis to 
them, but a little girl worthy  of affection.  Those women were the first to 
plant seeds of love in my  heart towards my daughter.   

Before we left the  hospital with Elizabeth, her pediatrician said, "God has 
chosen you to raise Elizabeth."  He was the first doctor to suggest this 
wasn't  some hopeless, meaningless tragedy.  Since God knew her before she was  
formed in my womb, I knew he was right.  Come what may, God loved Elizabeth 
before she was  conceived and knew she belonged in our family.

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  Bible.  God's Word was the only thing that brought 
hope and peace.   The book of Psalms especially comforted me.  Many of the 
psalmists wrote  things I wouldn't dare say to God.  They questioned His love and 
power,  thus helping me to honestly express my grief to God.  I could relate to 
the  writers' pain and feelings of abandonment as they waited on God's 
deliverance.  Knowing I wasn't the only one despairing of life made me feel less 
alone in my  anguish.  I soon stopped asking God to kill me. 

As I rocked Elizabeth, I would also listen to sad music about others who have 
 endured indescribable suffering.  Releasing my tears alone with Elizabeth  
and the Lord began to bring healing to my heart.  Elizabeth loved to be 
held--something my first born daughter  Jacqueline never enjoyed.  Seeing Elizabeth 
rest contentedly  in my arms brought me pleasure.  And, she began looking me 
directly in the  eyes.  We had connected! (It was confirmed later that she could 
hear as  well.) 


Despite my  growing love for Elizabeth, I was  continually grieved by all the 
things she couldn't do.  She couldn't lift  her head, sit up, play with toys, 
babble, or anything.  All she could do  was smile--and thank God, she did 
that a lot!

A turning point  in my lengthy depression came when Elizabeth, at eight 
months  old, suffered excruciating and relentless muscle spasms.  I called  
Children's Hospital.  I was told she was probably having seizures and to  get her to 
the emergency room.  "Oh God, I can't take another  problem...where are You?"

As I watched Elizabeth jerk in agony on the hospital examining table, I 
seriously  doubted God's love for us.  How could He let her endure this?  How was  
this supposed to work for our family's good?  The emergency room doctor did  
not think Elizabeth was having  seizures and sent her home with an antibiotic, 
believing that would be the  cure.  But her condition did not improve.  

That afternoon I  read a book on the power of praising God and being 
thankful.  So I began  thanking God for every thing I could think of, like Elizabeth's 
ability to see and hear.  I even thanked God for  this trial, trying 
desperately to believe He would use it for good.   Although my anguish over Elizabeth 
was not eased, praising God kept me close to His comfort  and far from 
despair.  The following day, I brought Elizabeth to her regular  pediatrician.  He 
quickly diagnosed her as having a simple case of  gastroenteritis!  The medicine 
he prescribed began to ease her pain  immediately.    

When Elizabeth recovered from her bout of gastroenteritis and became her  
cheerful self again, my soul rejoiced with happiness.  For the first time,  I 
enjoyed several days in a row when Elizabeth's delayed  development didn't 
overwhelm me with sadness.  I was just grateful that she  felt good and was able to 
smile again.  From then on, I tried to keep my  mind focused on the good.  

When Jesus raised  Jairus' daughter from the dead, Jesus told her family that 
she wasn't dead--just  resting.  When I was tempted to become depressed by 
how delayed Elizabeth looked, I would remind myself that her present condition  
didn't mean she would never be normal...she was just resting!  All kids  
develop at different rates, and Elizabeth's rate was just  a little more different 
than most!  Even if God never healed her earthly  body, her afflictions were 
still only temporary. 

During the months  between Elizabeth's bout with gastroenteritis and her 
first birthday, I  spent more time appreciating the lovely things about Elizabeth. 
 She was quick to smile and slow to complain.   So many things delighted her: 
 the wind in her face, a bath with her  sister, kisses from her family, and 
ice cream.  She laughed hysterically  when tickled or swung through the air.  
Unlike other siblings, Jacqueline  and Elizabeth couldn't sit around and pass 
toys back and forth, or mill around  the back yard together, but they enjoyed 
snuggling while watching a movie or  listening to a story.  Elizabeth loved to 
watch Jacqueline's endless ballet performances in  the living room.  The more 
leaping the better.  And of course  Jacqueline thought Elizabeth was a great  
audience, as she was the only one who would stay put until the bitter end of 
her  performances! 


We had much to  celebrate by Elizabeth's first birthday, her second 
Christmas.  For one, Elizabeth had  survived!  Despite her limitations, she was the 
happiest person Jim and I  had ever met.  When we looked upon her, we no longer 
"saw" all her  abnormalities; all we saw was her pure, cheerful heart.  We 
couldn't  imagine being a happy family without her.   

Elizabeth's therapist told  me not to get depressed about her developmental 
level (which, sadly, she put at  two months) but to look at all the 
improvements she had made.  Her arms  were less stiff and she was better able to follow 
brightly colored toys with her  eyes.  These sound like minor skills, but given 
the condition of her brain,  they were not.

And we had another reason to celebrate that  Christmas:  God gave me the 
unconditional love for Elizabeth that I had prayed for!  And I had learned the  
exciting lesson that "I can do all things through Christ who strengthens  me."  
What a Christmas present!     
Although I  battled sadness over the fact that Elizabeth was unable to play 
with her birthday presents, I was  beginning to feel normal a larger percentage 
of the time.  Yet still, I  prayed for a miracle. 
Elizabeth's fourth  birthday rolled around.  She was developmentally between 
a two and four  month old.  As I wrote a Christmas form letter to my family, I 
reflected on  the four years of growth for her.  And for all of us.

Dear Family and Friends,   
We've had fun this month preparing for Elizabeth's birthday party  and for 
Christmas.  Yesterday, the 18th, was Elizabeth's fourth  birthday.   
In the morning I sat Elizabeth in her stroller  so she could keep me company 
while I wrapped Christmas presents.  As I  glanced often at her smiling, 
contented face, I was filled with thankfulness as  I happily recalled her arrival 
four years ago.  All of a sudden I sat  stunned--I was reliving her birth as if 
it were a happy memory!  I had only  been thinking of the moments I held her 
and noticed how sweet she was--not how  horrified I was at the prospect of her 
dismal future.  I was thrilled to  realize that God had erased the sting of 
my overwhelming anguish and in its  place had magnified the happy moments!    
This year, I decided that Elizabeth's birthday party  would have a ballet 
theme.  We dressed her in a new dancing outfit, rolled  up the rug and put on our 
video tape of the Nutcracker for inspiration.   When Elizabeth grew too tired 
 to stand in her therapeutic walker, Jim lifted her out and swung her high in 
the  air, around and around.  She giggled in delight at the spinning room, at 
 the air on her face, at the pretty Christmas lights, and especially at her  
father's smiling face below her.  Despite the odd combination of Elizabeth's 
outfit--a  yellow tutu with pink and white foot orthotics and Barney 
sneakers--I smiled as  I thought, "Tonight, Elizabeth is the loveliest  ballerina in all 
the world.   
Although I will always pray for a miracle, Elizabeth is indeed a 
blessing--just the way she is."

Merry Christmas everyone!

Love, 
Lisa, Jim, Jacqueline and  Elizabeth

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