September 11

As I reflected on 9/11 I found a short video recounting an event I had not heard before.. The story of “the man with the red bandana”. It begins with the words, “What would you do in the last hour of your life?” As our world has become smaller and smaller solidly entrenched in Batten disease, I immediately thought of Luke and Rachel. What will we do in the last hour of their life? My brain seems to want me to do a dress rehearsal for what is to come. Through my thoughts the video continued to play, telling the story of Welles Crowther. A man whose entire life seemed to lead him to exactly where he was needed for ONE HOUR. He did not choose for a plane to crash into his workplace. Yet it did. Luke and Rachel did not choose to have Batten disease, yet it happened. And they seem to be exactly where they are supposed to be for their ONE HOUR (15 years and counting).

Welles saved 12 lives in his hour each one remembering what he said when he “appeared out of no where” with his red bandana.

“Everyone who can stand, stand Now; if you can help others do so. It was those words that lead me back to our life. Thinking back on the lives that Luke and Rachel have touched, inspired, challenged, changed.
And to the ones they haven’t reached yet.

And like Mrs. Crowther… I am proud.

They have stood for as long as they could and their courage as they face each obstacle the disease throws at them helps others.

In Welles’ one hour he climbed back up 17 flights of stairs, his obstacles fire, death, smoke, and debris in what must have seemed like a lifetime. His hour ended as the South tower came down. The effect of the man will resonate for generations.

The terrorist we face is in our cells and for now the towers will continue to fall. Each time our world will look a little different. Rebuilding to be exactly as we were before isn’t an option; readjusting our view is. Each time the effect will touch, challenge, inspire, change…..someone.

A Six year old Welles was given a red bandana that he carried always. Perhaps the Twenty Four year old Welles used it to keep the smoke out of his lungs, or maybe it was meant to be in his hands so his parents would “know”.

I look forward to the “knowing”.

What we will do in the last hour of our children’s lives? We will be Proud.
And I for one hope I will be able to remember and live by the words of The Man With the Red Bandana’.

“Everyone Who Can Stand, Stand Now; If You Can Help Others Do So!”


“A dream is a wish your heart makes when you’re fast asleep.” Disney may have gotten that one wrong unless as last night’s dream suggest I wish I was on a sinking ship chatting with my third grade teacher while living at my house that is not really my house.

Joking aside, don’t we all wish for things? Things for our future? I’m not talking about being president or curing cancer but “normal” things at the appropriate times in our lives…I wish I could get my ears pierced (that goes for the guys I went to high school with in the 80’s), I wish I could go to a certain college, meet the right person, have kids, have our kids be happy, get a bigger house, have our kids leave, get a smaller house….you get the idea. Sometimes, we get our wishes and sometimes we don’t. When we don’t, we just shift them to something else. Now when our children don’t get their wishes, our hearts break a little, but we talk to them, pray with them, and show them how it will be okay.

I remember like yesterday Luke realizing he couldn’t play baseball or go to A&M while Rachel wished for friends and a boyfriend. Over and over, I’ve given the speech about how they are different and special.

Parents of handicapped children often are seen as aloof and criticized quite a bit for not being more “involved” in their child’s school especially in the upper grades. Well, to be honest, it hurts to see the “normal” girls with their chatter and giggling. It is torture to take Luke to his high school’s baseball games because we wish we were watching him out on the field. I’m not without fault—as a teacher, I criticized parents for putting their multi-handicapped child in summer school, thinking they just wanted free babysitting. Now in their position, I know how very wrong I was. I can’t stimulate Rachel on my own everyday all day—there are no days at the pool, vacations, friends who come over, or trips to the movies. She needs more than her wheelchair, recliner and bed. This is when my older parent self would like to smack my younger know-it-all teacher self.

So, what would you do if you had to quit wishing? I mean for the “normal” things. I can’t wish my husband Sam and I could go on vacation because that means the kids will be gone. I can’t wish to go back to work because that means the kids will be gone. I can’t wish for that retirement home by the water because that means the kids will be gone. I can’t wish to leave Houston because that means the kids will be gone. A doctor asked me this week, “What is your plan for the future?” My plan is wishing the future wasn’t going to happen.