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Wednesday, November 28, 2012


I met Mabel in July. I held her little, tremoring body, and breathed in her scent, and simultaneously felt my heart twist in anguish. It has taken me this long, this many months, to wrap words around those moments.


I met Mabel's Mommy online - in the midst of social media and lives shared in 140 characters or less - we connected  in the way only God can connect people. I think we found each other in an online group that was reading Francis Chan's Crazy Love, and now it was so many years ago that I forget exactly how it happened - who found who, who pursued the friendship etc.. All I know is that her friendship fed my soul during a time when I needed it most, and I feasted. For both of us, our lives looked different back then. Maybe simpler, but I think we both can agree that we were living shallower lives. Now we have both tasted deepness, intimacy with Jesus that is only born of anguish, turmoil, and raw heart ache. Our lives have continued to intermingle as God takes each of our families on unique journeys. They are separate and the paths are different, but each has led to the same place - face down at the feet of our Jesus, stripped naked of everything that used to sparkle and catch our affection. It's all been removed, the blinders have been ripped, painfully off, and we are truly seeing for the first time in our lives. And that has binded our hearts together in a supernatural way.


She is my opposite. Spunky. Fun. Loud. Wild. A flash of red hair and brilliant blue eyes. She is confident and capable. She is brave and beautiful. Through her ginger personality is a calmness and a wisdom that runs deep and draws people to her. And though miles separate us, she is in my thoughts and prayers daily. Ramee is one of the first people that I shared Jamesy with - his photo, his story, his unique way that God created him. She has been one of the first people that I run to with fears over my youngest son. She has dirtied her knees for this boy over and over again, and when she held him for the first time this summer, my heart soared. It was Auntie Ramee that believed Jesus for me when I was too scared for healing in Jamesy's eyes. It was Ramee who prayed Jamesy here and listened as the diagnosis came fast and furious. It was Ramee who believed with me that Habi belonged in our home.

And all the while, while holding up my arms and shouldering my pain, she was across the country fighting for her own daughter's diagnosis.

Ramee and her husband Dan knew right away that something was unique about their Mabel, but it would take almost two years of vicious, heart-wrenching battling to finally have a diagnosis. I watched from afar Ramee endure the hardest two years of her life. I watched her change and grow, and I witnessed a fight ignite in her soul. I saw her abandoned by people who claimed the name of Jesus. I watched as she questioned the very faith she grew up in. Everything was pulled out from under her, as she went to war on behalf of finding answers for her daughter. With every message I opened from her and text message on my phone my heart cried out for hers. No mommy wants this for her child. No mommy wants to feel so helpless, knowing that something was wrong with her child, but not knowing what it is. And then in July, just a week before we would meet face-to-face for the first time, a name was finally put to the unknown.

I remember getting her text, and for a moment my heart soared - an answer, a diagnosis, a name for the disease that Mabel was born with. Help would surely come - answers, relief from the months of searching. Then I sat at the computer and googled that name, and as I read my stomach lurched and my eyes burned.

Batten Disease

I scanned the page looking for a prognosis, and what I read made me almost vomit: If the disease starts in the first year of life, death by age 10 is likely.

Mabel was diagnosed with a terminal, brain disease.


A week later I held Mabel in my arms. I remember on the long drive out to her imagining what it would be like, and if I would be strong enough for Mabel and her family, knowing that I was holding fragility. I wondered if my compassion and empathy would be able to handle the pain. But the moment I snuggled that little girl close, I didn't see a disease or seizures or a feeding tube in her belly.  I saw a beautiful little girl with round bright eyes and amazing auburn hair. I saw purpose for her life and for the pain. I saw Mabel -a little girl whose giggles and smile filled up her home. I was afraid that I would look death in the eyes, but instead I looked at LIFE. Beautiful, God-breathed - wrapped in His grace - life. Sadly, she and many others lovingly created by our God, are considered the least of these by our world, but when I held her, I looked into the face of my Jesus, because He is present in those this world calls least and lowest. It is there that we meet Jesus. He is near to the broken hearted, and He was present all over that home.

Though sadness was etched into the eyes of Mabel's parents and questions that should never have to be asked were on the lips of her big sister and brother, there was also joy, peace, courage, calmness and love wrapped in Mabel's family and surroundings.There were moments that I looked at Mabel and her parents, and the knowing of what was to come sucked the breath from me, but then grace and mercy and joy would step in. I won't pretend to understand the immense heartache and knowing that Ramee and Dan wake up to every morning. I won't pretend to be able to empathize with what they feel and what they will face. But I am continually amazed at the grace and dignity they exhibit as they walk through some of the hardest challenges that any parent could be dealt.

Mabel and her story are changing me. She is teaching me how very fleeting this life is. She is teaching me to embrace courage and throw off the chains of fear - to live all out for Jesus. We are given ONE, beautiful life to live for Jesus - there are no second chances. Thank you baby Mabel. Auntie Tiffy loves you.


Oh my. And so does Uncle Jimmy. I fell in love with him again, as I watched him with you.

 I invite you to enter Mabel's story here.



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