"What is my only comfort in life and death?
That I, with body and soul, both in life and death, am not my own but belong to my faithful Savior, Jesus Christ, who with His precious blood, has fully satisfied for all my sins and delivered me from all the power of the devil and so preserves me, that without the will of my Heavenly Father, not a hair can fall from my head..." (Heidelberg Catechism, question #1)
My friend Scarlett is a mom much like me. She loves her baby. She loves his baby smell. She videos his silly interactions with his older siblings. She takes lots of pictures of him in her arms or wearing his glasses or being adored by one of his relatives. She laughs when he laughs and hurts when he hurts.
Baby K is a baby much like mine. He's got fuzzy Woodstock hair, soft skin, and dark eyes. He loves his mom, his dad, and his big brother and sisters. He cries when he's uncomfortable and coos when he's happy.
But in one important way, Scarlett is walking a mom journey unlike any I have walked. And Baby K is in a fight for his precious life.
Baby K has Cockayne's Syndrome type II.
That means Baby K is aging prematurely.
That means people stare at him because they know intuitively something is different.
That means Scarlett finds herself educating people around her about this disease that only currently infects 200 to 300 people on the planet.
And, currently, it is both incurable and terminal.
Scarlett is one of those people who sees beauty in the world around her. God has gifted her with creativity and the eye of an artist. And while words are my vehicle for expression, Scarlett is incredible at being able to express a wide range of experience with beautiful materials. I never cease to be amazed at what she creates.
And now, Scarlett has turned her art into a way to bring awareness to Cockayne's Syndrome. She is turning the times when people gaze in curiosity at Baby K into an opportunity to educate them about this disease by handing them beautiful hand-drawn cards that explain his syndrome. She has also begun a way to raise money for the disease.
The symbol for Cockayne's Syndrome is the butterfly. Right now, she is selling butterfly cards and other related items on her site to promote awareness of Cockayne's Syndrome and raise money for a cure. If you are artsy and would like to give of yourself to this worthy project, please see Scarlett's site here.
It is hard to sit on the sidelines and watch as your friend must carry a burden you cannot help carry. I cannot make her heart stop hurting. But I can--and do--bathe Scarlett, Baby K, and the rest of her family in prayer. And I can get the word out about Scarlett's work on behalf of Cockayne's Syndrome.
So, give if you are able.
Pray for Scarlett.
Pray for Baby K.
And know that they are in the care of my good and sovereign God, who is our only comfort in life and death.