Monday, August 24, 2009

A Life Touched by Treacher Collins

"Mama, when will I be like Alex?" My niece lets her little feet dangle into the cool lake and she looks out across the choppy water at her big sister splashing into the deeper waves.

"Hope, you know God makes us all different. You won't ever be like Alex." My sister wraps Hope in a warm embrace, holding her carefully by the water's edge. They sit together dangling their feet from the dock's edge.
"You know what I mean, Mama." Hope's voice takes on urgency, frustration.
"Yes, you want to know when you can swim like Alex." Here, my sister sighs and places a gentle kiss against Hope's red curls.
A quick nod is the only response from the little person held by the embrace.
"I don't know if you'll ever swim like Alex. Right now, let's just do what we know you can do. Let's put our feet in the water and watch Alex and Daddy play."
Again, just as so many times before, my sister does what I could never do ... she explains to her youngest daughter that life may never be what we call fair. For the time being, this explanation is satisfactory. Hope turns her attention to the water tickling her toes. And, she smiles. That smile that lights up her world and ours. It's the smile of a child touched by Treacher Collins.
Hope has never jumped carefree into a pool of water. She has never fallen playfully into a drift of snow and she has never danced in the rain. And ... she never complains or feels sorry for herself.
In order for you to understand this moment in Hope's life, I should take you back to the day of her birth ....
On a beautiful, crisp winter morning, we welcomed the second of my sister's girls into this world. Anyone who knows me would tell you I was gushing with excitement. I have loved each of my nieces from the very moment I set eyes upon them. They are each beautiful in their very own special way. I will change their names in this blog to protect their innocence. However, anyone familiar with me will know the identity of these children. Anyone who does not know me ... I pray you will be touched and perhaps somehow changed by this story regardless of their names.
Alex is the eldest of my sister's girls. She is a tall slender girl. She loves dance, the Jonas Brothers and everything bright and cheerful. Alex has her father's bright blue eyes and her mother's grin. She was born with a quiet spirit and a love that would someday later prove to be a safe place for her baby sister to run when the world was cruel.
Hope is the younger of the girls. She too is a redhead but this is where the similarities end and Hope becomes her very own little person. On the day of Hope's birth, I drove my sister to the hospital and dialed my brother-in-law's work number countless times to let him know that the moment he left home, his wife had gone into labor. Hours later, we would learn Hope was born with Treacher Collins Syndrome. TCS is a craniofacial syndrome that affects the ears, nose and throat. Hope was born with lobes and no ear canals. Her lower jaw was too small and the doctors were forced to put in a trach. Because of this, she has a feeding tube. Hope hears with the help of a bone conducting hearing aid. These limitations are the reason she has never and for the time being can't enjoy some of the things we take for granted ... swimmining, playing in the snow ... dancing in the rain...
Alex and Hope are sisters. They love each other fiercely. I know this love because it's exactly how I feel about my sister, Mary. Everyone needs a safe place to run when the world gets crazy. Hope and I have something in common. We have a big sister that we admire, adore and look up to ... our safe place to run.
I have so much more I want to say about my sister, my nieces ... I'll save those things for another day. Today, I want this blog to be an encouragement to those touched by special needs ... an encouragement to those parents of children with special needs. There will be tough days, painful days ... days filled with blessings.
This I say to my sister, my nieces and my brother-in-law ... you are loved. You will always have a safe place to run when the world is unfair, scary ....
Psalms 139:15-16 "My frame was not hidden from You. When I was made in secret, and skillfully wrought in the lowest parts of the earth. Your eyes saw my substance being yet unformed. and in Your book they all were written. The days fashioned for me. When as yet there were none of them."


  1. This is a beautiful story. You should be (and are) a great writer. I'm wondering if I know "Hope" and/or if they are on our TCS discussion internet site. If they aren't, maybe you can tell "Mary" about the site and she can contact me.

    I have TCS, as well as a brother, and also my daughter, Olivia (now 15 yrs old) has it. Ask "Mary" to write me anytime.


  2. Oops .. I misspelled one of my email addresses; should have been I left out one of the 'n's.

    Our website is under renovation but once back up, it's (TCC). The TCC holds yearly retreats for those from all over the world who have TCS and their families.