Living the Dream

Living the Dream

Wednesday, December 19, 2012

Christmas and Tear Drops

The beautiful thing about having an oldest child that works with Children's Hospital Foundation, is that I get to meet and be acquainted with some of the neatest kids and their parents. 

They all have special stories, they all are miracles, and they all touch your heart.

One in particular, that I haven't met, has kept me intrigued and amazed for awhile now.



 
Ellie Kate has a rare disorder called NKH (even if I spell it out you won't know what it is, it is so rare).  EK wasn't given much hope at birth.  Her mom and dad are FAITHFUL Christ followers and knew that every day with this little girl was a gift  (Sound familiar?)  They knew she was terminal, but were determined to give her the very best life I child could have. 
 
I've heard Lacey's stories, we have many mutual friends, but I've never met her mom, Ryan.  She is just beautiful, (Inside as well as out) and has tirelessly fought the good fight to be in a "Normal" life.  Come to find out she is a "Tully" and I love me some Tullys.  My brother went to school with her uncle Kevin (they actually played a guitar duet in the 7th grade talent show), and her aunt Jamie was one of my besties for many years.   So I feel a connection with this lady I've never met, but love through association. 
 
And as I read her carefully crafted words about going home on hospice, and the gut-wrenching decisions they are having to make as a family, my heart breaks and mourns for her. 
 
I remember the Christmas of the insane blizzard and how Lacey and I were "Trapped" in the hospital with a very ill Laynie. 
 
It was the first time we acknowledged that we were facing the finish line with her.  God granted us 7 more precious months after that visit, but we had to come to grips with the fact that after being blessed 22 months with her, that her life on earth was drawing to a close. 
 
I want to tell Ryan that God will hold them in a special close way, and that every single second left with their angel will be joyful.  I want to tell her that the laughter she has will be through tears and in hindsight, it's a miraculous gift.  Embrace the laughter, it is God's present to you.
 
I want to let her know how her precious daughter touched us, and what an impact and difference she made.  She was a rare angel on earth, and everyone that knew her, loved her.  Even people that never got the priviledge of meeting her, loved her.... me being one of them. 
 
What an honor it was, to read your brave words about your angel, and your willingness to share her with us, and let us love such a gift with you.
 
I stand with you, in your words that God could heal her tomorrow for more months/years with you, or she could have the total healing and run and run and run with Laynie. 
 
Either way, know that you are loved and prayed for and cherished by so many.
 
Friends, pray for this beautiful family.  Pray for the brothers, the mom and dad, the baby sister, the grandparents, aunts and uncles, and thousands that stand in the gap for them, while they march tirelessly on.
 
 

 
 

http://www.carepages.com/carepages/EllieKate       Here is the link to follow Ellie Kate's carepage

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