Saturday, January 22, 2011

Move Mountains

My mom frequently shares nuggets of wisdom such as the one below with me via email.  I love getting these messages from her, particularly when I'm having a rough day. They serve as a reminder of what I'm fighting for and reassurance that I'm not fighting alone.

"I believe life is constantly testing us for our level of commitment, and life's greatest rewards are reserved for those who demonstrate a neverending commitment to act until they achieve. This level of resolve can move mountains, but it must be constant and consistent. As simplistic as this may sound, it is still the common denominator separating those who live their dreams and those who live in regret." -- Anthony Robbins

I won't ever give up.

Thursday, January 20, 2011

Tuesday, January 11, 2011

What's in the Box?

My husband told me something profound tonight as I sat cross-legged on the floor of our home office, shuffling through pictures of a trip during which, three years ago this Saturday, January 15, we walked into a hospital thousands of miles from home and took a leap of faith - a leap that sadly never resulted in the miracle for which we hoped with all our hearts. On a day to day basis, he said I am weathering Taylor's illness much better than in past years - that I am stronger, even though in some ways I am sadder. But Taylor has a degenerative disease, so the day to day is much more painful than ever before. That made me wonder, if my husband is right - if he knows me as well as I think he does - what changed in me to make it so.

Being that we are just a few short weeks removed from Christmas, I came up with a holiday-themed analogy to explain the change.

When Taylor was first diagnosed with Batten disease, I built myself up every single day only to get completely torn down before the day was over. I was so focused on finding the one thing that would truly make it all better - for someone to tell me Taylor would live without lying to me - that I was miserable all of the time. It was as if each day was Christmas morning, and I tore the paper off the biggest gift box under the tree expecting it to be exactly what I asked for, only to realize it wasn't that at all and be totally crushed as a result. It didn't matter if the gift was nice. It didn't make Batten disease disappear from our lives, so to me at least, it wasn't nice at all.

I've been living with the knowledge that my sister has a fatal disease for more than 1,600 days. That's a lot of Christmases and a lot of heartbreak, since not a single one of those gift boxes under the tree has ever had the miracle wrapped up inside. As time went on, I realized that I couldn't always have exactly what I asked for. But while I never stopped wishing for the miracle, I learned to appreciate other things in those boxes - seeing a smile on my sister's face, taking a long walk on a summer evening after the lightning bugs come out to play, hiking to the top of a canyon in Utah painted with a brush that could only have come from Heaven, being in the same room as the people I love. Those gifts enable my very survival. I know I might never receive the one gift I seek above all others, but that tragic, haunting realization can't steal the other gifts away from me. They had my name on them, I opened them, and they're mine.

We dismantled our 'real' fake Christmas tree over a week ago. But first thing tomorrow morning, I'll unwrap another gift. I don't know what I'll find inside, but that's the beauty of life - the unknown and the dreams that guide us. And who knows? Someday, I might just unwrap that miracle.

Thursday, January 6, 2011


"Faith is the strength by which a shattered world shall emerge into the light."

-Helen Keller

Love to the friend who gave me these words and to all those who walk beside me in my search for the light. 

Monday, January 3, 2011


Thanks to Jennifer VanHoutan, the mother of two children with late infantile Batten disease, for letting me share the following:


Imagine your child tripping over his feet and eventually not being able to walk. Imagine 15 months of your child regressing and no answers as to why?

Imagine seeing over 100 seizures in 2-1/2 years.

Imagine your child swimming one summer but the next summer he is expressionless when you take him into the pool.

Imagine your child being able to play tee-ball and now can no longer hold a ball or bat.

Imagine your child not being able to hug you or say "I love you" anymore.

Imagine your child having no known friends he/she talk about.

Imagine your child never being invited to a classmates birthday party.

Imagine your child singing the "ABCs" and can no longer speak a word.

Imagine your children taking 58 medicines a day.

Imagine your 6 year old having the mind of a 4 month old.

Imagine having only 25% chance per child to pass on a defected gene and it happening to 2 out of 3 of your children.

Imagine something so rare the chances of winning the lottery are better.

Imagine all day your 6 year old needing 100% support and supervision.

Imagine a disease that takes away a childhood and then the child.

Imagine no cure....yet.

As you know, we don't have to imagine this - this is our reality. As it is for many other families we've met during the last 2 years. Our goal today, and for the rest of our lives, is to bring awareness and raise funds to support research for a treatment for a cure. Noah hit every milestone on time until he was 3 and he was a bright kid. Laine still talks, but her speech is regressing and her gait is widening. Emily has a sharp reality as to what is happening to her siblings....can you imagine?


It's impossible to put a value on the life of even a single child. So while Batten disease is rare, believe this: no child or family should have to face its unimaginable horrors. We can ignore Batten disease, but at what price? Is Noah's life not worth fighting for? Or Laine's? Or Taylor's?

Batten disease changed my life, and I know what it does to children and families in the worst possible way. It's dragged me to hell and back.

Yes, Batten disease is rare. But look at it this way: there are hundreds of children currently living in the United States alone who will die of some form of Batten disease unless a cure is found first. And that's not to mention all of the children living across the rest of the world today or, for that matter, the children who haven't even been born yet, many of whose parents are walking around without the slightest idea that they carry the gene responsible for Batten disease. Like my parents, they won't find out until they watch their son or daughter experience unexplained deterioration and go on to receive a wrong diagnosis or two or three before finally arriving at the catastrophic conclusion that their child is destined to die young, all because of a mutation on a single gene from out of the thousands upon thousands of genes that make up a human being.

Batten disease is simply too tragic too ignore. In July 2006, my family asked friends for one thing: to believe in miracles. In the beginning, we asked people to believe for Taylor's sake. Today, I'm asking you to believe for Taylor, but also for Noah, and Laine, and all of the others whose lives are on a cursed ticking clock.