Tuesday, January 15, 2013


I have met many people in this journey of discovery.  That's what we have been on, after all.  
Searching for a name to cover all of our daughter's horrid symptoms.  Searching inside of ourselves for that which God wants to teach us and how He wants to grow us.  Searching for anyone who will look and listen in order to help us, even just by knowing our story.

I have gained some of the most extraordinary friends in the last several months.  Ironically, it is because of the life changing diagnosis of Batten Disease that they have entered my life.  They are moms that are from another realm.  Their strength, determination, advocacy, beauty and love radiate through them in such a way that you could almost visibly tell them apart in a crowd.  They have endured much; all of which is similar to what we have gone through or what we will experience in the future.  They have given me guidance, prayed with me, exchanged medicine ideas and laughed with me about this life that is so not funny. 

Their grief is usually visible too.  They wear it well but it is unmistakable.  Their eyes tell the story of strength and sadness; both that go hand in hand.  Some have lost babies and some will lose babies.  But all of them share a connection that will be lasting.  

I have had a really hard time finding children whose symptoms started as early as Mabel's.  Dr. S told me on diagnosis day that I may not find any family with a child this young because most of them don't live long.  I kept looking and am so grateful for this world inside of the web that has allowed me to connect with other families experiencing similar walks in life.  I have met only a handful of families with children who were diagnosed around Mabel's age.  

Today I want to direct you to my friend Jenni's blog.
Today marks one year since her beautiful daughter Celia passed away from Batten Disease.  
I don't have adequate enough words to express my sincere empathy to our friends today but I can say that Celia's beauty is unmatched.  She takes my breath away when I look at her sweet face.  Please take a few minutes and read more about this family and their journey.  Please continue to put a face to this disease so that your heart may be changed; because she changed mine.  

Thanks to Jenni and Andy, Mabel now has a suitable place to rest.  We are able to make her more comfortable because of their giving.  We are grateful.
There are parents in this process that are very set apart for me.  Jenni and Andy are that.  They provided amazing care for their daughter in the form of absolute comfort.  They came to an acceptance and moved forward with great dignity.  Even still, their hearts are giving and they are willing to be a resource to others.  They amaze me and I pray that in the days ahead that I would utilize the strength I have gained to walk in the kind of grace that they do.  

Jenni, I know I have told you but I need to say it again...
My heart aches for you today, almost physically.  I don't know your pain and won't pretend to know but I hope that you feel my love and support.  I hope that in this day you would see Celia all around you; in the eyes of your boys who resemble her so greatly and in the arms of your husband as he hugs you tightly. 
She changed me and I pray she continues to do the same for many others.  She is beautiful and the most perfect gift.  Wrapping you in love today, friend.



I am so thankful that through this journey you & your family are on that you have such a strong foundation of family, friends, & faith to help carry you through. Keeping you all in my thoughts & prayers & sending hugs....

Andy and Jenni said...

Thanks, Ramee. I'm so sorry we met through such horrific circumstances, but so blessed to "know" you and sweet Mabel.