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Savannah Lee-Ann
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Welcome to
Savannah's web page.
It has been created for the love of Savannah to keep friends informed of her life with Rett Syndrome.
Rett Syndrome is an X-linked neurological disorder that affects mainly girls. (It is usually fatal in boys) Most girls are born and develop normally for the first 6-18 months of life, then suffer a regression and are left with lifelong disabilities.
Savannah was born on October 8, 1999. She weighed 7 pounds and was so beautiful and perfect in every way. She grew and developed normally (actually she was above average)until she was about 15 months old. She was able to talk and learned to walk and played with her toys just as other "normal" one year olds do.
Then, she slowly began a regression which eventually took away her ability to talk, walk and use her hands. Her favorite doll that she carried everywhere sat alone on the floor; she was unable to pick it up to play anymore. She began having odd hand movements and pacing the house incessantly (before she ultimately lost the ability to walk when she was just 26 months old.)
We learned that she had RS on August 23, 2001----the worst day of my life; she was not even 2 years old.
She now has a G-tube to combat weight loss and failure to thrive associated with RS.
Savannah went into a coma March 8, 2004 and was airlifted to Richmond, unresponsive, with a blood sugar of 1600. Chris and I had to drive there not knowing whether or not she would be alive when we arrived. She was diagnosed with diabetes (not related to Rett syndrome)and had to have a pacemaker placed. She soon started having seizures, which sometimes accompany the myriad other issues associated with Rett syndrome.
(To read more about Savannah and Rett Syndrome, see the story "Savannah Smiles" (This story will be posted after it is published in June)below)....
  - Get Your Own
Mama and Vannie 2002
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"Be who you are and say what you feel, because those who mind don't matter.....and those who matter don't mind."
-----DR. Suess
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Savannah's 7th birthday party; complete with tiara and a mouthful of REAL sugar cake!!
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*HUGS* TOTAL!
give Savannah more *HUGS*
Get hugs of your own
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There is in every true woman's heart a spark of heavenly fire, which
lies dormant in the broad daylight of prosperity; but which kindles
up, and beams and blazes in the dark hour of adversity.
-- Washington Irving (1783-1859) American Writer
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:-)
(The green dress Savannah is wearing to the dance is very special...it was mine when I was her age!!)
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When we long for a life without difficulties, remind us that oaks grow strong in contrary winds and diamonds are made under pressure.
-Peter Marshall
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"The most important thing in communication is to hear what isn't being said."
--Peter F. Drucker
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Cameron, Savannah and Levi
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The Woman in the Mirror......
by Cheryl Veenstra
I saw an unfamiliar face in the mirror today. She caught my eye as I
rushed to start the day. I hardly recognized this woman. What had changed in
her eyes?
She was no longer young, naive and viewing the world through
rose-tinted glasses. What had caused the worry lines and thoughtful brow? How could she look so fragile and weary, yet also determined and strong?
Around some
corner on the road of life.......she had been shaken to the core of her very
being. There was a time when only tears and fears were reflected in those eyes. A doctor's
unexpected words, the future suddenly uncertain......gray, shadowy
images of the vague and scary concept of her child coming into the world as
"disabled".
An incredible journey began that caught her by surprise and would take
her places she never thought she would go. The journey had been long at
times and she
had shed tears of pain and tears of joy. She'd had hopes and dreams
dashed in the blink of an eye. She'd asked the question WHY?
She'd had friends
fail her and not know what to say or how to help. She'd seen her child suffer.
She'd cried silent tears into her pillow at night. Tears of exhaustion and
fear.
Tears of helplessness and longing. Tears of thankfulness and relief.
Tears that are choked back during the day, but are unleashed like floodwaters in the safety of the night to wash away any walls being built up to protect
her heart.
Nights of worry blurring into days of endless responsibility. But then
slowly, but surely, her broken heart begins to heal and mend.
The same pity she
had once felt as she watched a
mother hold her 'special child' close, was now
looking back at her in the eyes of strangers.
But a smile tugs at her lips as
she suddenly realizes that now she knew the secret! The hard-fought,
carefully guarded secret that was slowly revealed in the depths of her heart.....but only after the tears and anguish of the first days and weeks of this new life. The illusive truth that mothers of special children discover as they take their first faltering steps down this new path........It was okay. She and her child could survive, even thrive!
It was not as grueling and unforgiving a road as she had imagined. The
fog, confusion, despair and fear were being slowly replaced by peace,
acceptance, contentment, joy and gratitude. A mother's unique, unconditional love changes the equation that may look hopeless and tough from those outside, looking in.
She will fight for, live for and die for her child. These special children
transform those around them into different people. Stronger people.
Dare I say it......deeper people. Long gone are the days when all they had to
worry about was where to vacation or what color mini-van to buy. They now struggle with life and death medical issues. They must answer their child's questions about life's unfairness and pain. What remaining strength and energy they have is spent
trying to make their
'family life' as normal and happy as possible.
A twinkle returns to the eyes of the woman in the mirror as she takes a
deep
breath and remembers what she's been fighting for. How very worthwhile
this
journey has been! This child is an incredible gift and it is a
privilege to be
given the task of raising her. Her child is beautiful and perfect in
her
eyes. She longs for her child to be seen by the world through this
filter of love,
acceptance and potential.
Could others take the time to see past this little
girl's slower steps to see the life and love reflected in her eyes?
Would her child be able to see herself through the filter of contentment that the
woman has journeyed so long to discover?
Hope was rekindled as the woman's
eyes grew brighter. The future remained uncertain, but the incredible, protective love she felt for her child threw a warm blanket over the cold, dark storm clouds that used to threaten her very soul.
As she threw open the doors of her heart, she felt the warm sun on her face and she beheld a beautiful rainbow of intense beauty and unmistakable peace. Hope still comforts this woman who cries in the middle of the night. Love gets her through each day. Faith takes her hand
and leads her around each corner and through each deep, dark valley.
Peace soothes her heart as she relinquishes control of their destiny to One wiser and all knowing. Joy brings laughter and smiles to those tired eyes once again. Each day is recognized for the gift it is.
I gave that woman a smile as I
left her at the mirror today. I'll see her again soon and I'm curious to see how
she will continue to change and grow.
She's not the same young, carefree
woman she used to be, but thats okay. I like who she is becoming and I feel
comfortable in her life. The sun is shining, the day is brand new, my
child is humming
and God is so good!
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"Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference." -- Virginia Satir
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We ae not human beings having spiritual experiences, but rather spiritual beings having human experiences.
----Unknown
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Savannah's Homecoming game cheerleading pictures have been moved to the "VIEW PHOTOS" link, beside the guestbook below!!
Journal
Tuesday, October 9, 2007 7:41 PM CDT Please watch and share the followng video. It is a very moving and informative video about Rett Syndrome...
As before, to stay in touch and get updates on Savannah or the rest of us with us, please find u on Mypace or email me privately. I am now very careful about discussing any personal information in this forum.
Our Myspace is private and can only be viewed by those people I choose or approve as friends. I urge those of you who do have myspace to add us to your friends list (except for those of you who already are :-)
I am keeping Savannah's caringbridge page running for awareness only.....I can not/will not be discussing any of our personal life here on caringbridge, until further notice, for various reasons.
If you wish to join us on our myspace page, you can find us by using my email address: Dragonbluedreams@AOL.com
OR my direct myspace address is: myspace.com/daddys_girl74
Read Journal History
Hospital Information: HOME!!
Links: http://www.rettsyndrome.org The International Rett Syndrome Association
http://www3.caringbridge.org/va/princesssammy/ Savannah's cousin battling Leukemia
http://rettsyndrome.magnify.net/ Rett Syndrome TV website
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