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Make Sure Kyli Margaret Is Not Alone This Holiday Season

Your contributions to Kyli Margaret's journal this year made sure that they never felt alone. Your tax-deductible donation in Kyli Margaret's honor will make sure that Caringbridge continues to bring hope and healing to those who need it most.

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Kyli Margaret’s Story

If you have faith the size of a mustard seed, you can say to this mountain, 'move from here to there,' and it will move. Nothing will be impossible for you.  ~Mathew 17:20

Videos (click to view):

Kyli 2002-2013 / Kyli 'Faith' 2008 

 

 


Kyli was born May 28,2002. She is a joyful girl with an infectious spirit and extraordinary will. She has beaten odds and made tremendous progress with the help of prayers, therapists, volunteers, family and friends.

At 11 weeks old, Kyli was hospitalized for Failure to Thrive (FTT). She has been tested for just about everything Doctors can think of.   Nearly seven years later she still does not have an official diagnosis other than "metabolic encephelopathy of unknown origin."

Ongoing Prayer Concerns:

  • Remaining seizure free and illness free.
  • Achieving a healthy weight. At  7 years old she is 39.5 inches and only weighs 31 lbs.  
  • Developing a regular sleep pattern. Kyli is truly a night owl often not falling asleep until 4AM.
  • Progress in all areas of physical development. Kyli is not independently mobile at this time. 
  • Progress in intellectual development through improved vision and use of her hands which enable her to communicate. 
  • Obtaining an answer regarding a medical diagnosis. 
  • Ongoing strength and endurance for Kyli's parents and caregivers so that we may continue to help Kyli be the best she can be.

 Joys and Miracles:

  • Kyli is considered legally blind, but can read large words.  
  • Kyli has been fed primarily via a g-tube since nine months of age, but by the age of four began eating 60% on her own.  (Note: After her March 2008 illness Kyli has not taken anything orally.  She has been 100% G-tube fed. We believe she will get her skill back.)
  • Kyli started giving hugs at age four and kisses at age five (Oh what happy days!). 
  • Though Kyli does not speak, she communicates YES/NO with a facilitation board and has even begun spelling short phrases.
  • Kyli started going on the potty March 2009 w/ a 70% success rate.

 

Kyli's Favorite Things:

  • God and Angels
  • Music (Phantom of the Opera, Vivaldi, Miles Davis, Josh Groban, Mercy Me...)
  • Birds (She gets her very own concert daily!)
  • Kleo- her gaurd cat
  • Being read to (Pippi Longstocking, Cricket in Times Square, and Secret Garden to name and few.)
  • Helen Keller is Kyli's hero
  • Taking walks
  • Pool from Make-A-Wish Foundation
  • The NY Yankees (especially Alex Rodriguez)
  • The Jets
  • Patterning with her faithful, beloved volunteers
  • Family and friends

Kyli's Nicknames:

Smiley Kyli, Goosey, Kyli-Lou-Who, Lady Jane, Mammy or Mam-a-lam, Boss Lady

Special Events:

30 Days for Kyli was launched September 2006. In 2009 we added Kyli's friends to this event.  To learn more about 30 Days for Kyli & Friends please visit: http://www.30daysforkyli.com/

 

VICTORY WILL BE OURS!

We believe Kyli will continue to overcome. We recognize there will be obstacles along the way, and there have been many, but we BELIEVE.

Latest Journal Update

Video/Poem

Hi All. Several people mentioned they did not see the video we posted at the end of the tribute Andy gave at Kyli’s service, so I am reposting it for you. I am also including the touching poem that Pastor Randy shared that day. 

We continue to take one minute at a time. We just miss our girl. Part of me is still waiting to wake up from this dream. It’s just surreal. I would like time to stop for a while, but the world spins on.  

We have taken much comfort in the memories you have posted and shared via email. Some of you have shared thoughts, dreams and images and we are thankful for those treasures. It is most helpful when they are written so we can sit and read, and re-read at times our minds and hearts can digest and remember all you share. I look forward to starting a project at some point of making a collection of memories for us to pull out when we need to. We are just starting to surface ever so slowly and carefully.  We will be responding to messages when we can. Every message and prayer is treasured. We thank you from the bottom of our hearts.

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Video:  Celebrating Kyli

http://www.youtube.com/watch?v=lJQcVnCyrEA&feature=youtu.be

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Gone from My Sight ~by Henry Van Dyke 

I am standing upon the seashore.
A ship at my side spreads her white sails to the morning breeze
and starts for the blue ocean.

She is an object of beauty and strength,
and I stand and watch until at last she hangs
like a speck of white cloud
just where the sea and sky come down to mingle with each other.
Then someone at my side says,

"There she goes!"

Gone where?

Gone from my sight . . . that is all.

She is just as large in mast and hull and spar
as she was when she left my side
and just as able to bear her load of living freight
to the place of destination.

Her diminished size is in me, not in her.

And just at the moment
when someone at my side says,
“There she goes!"
there are other eyes watching her coming . . .
and other voices ready to take up the glad shout . . .

"Here she comes!"

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