Just Keep Walking

Just keep walking. 

“Thank you Mommy” …if I could bottle that voice and those words of gratitude when they come  from the unlikeliest of people…my Will. Will who has so much to complain about or be discouraged with life… could be the most grateful person I know.  Will has a sheer appreciation for the little thing in life and continues to show gratitude despite his losses.

Will’s brain will continue to die at 4.6% a year without treatment, but amazingly, the loving, caring, compassionate, grateful cells of his brain thrive.

Is is nature or nurture?

Is it odd that this disease has spared these cells; or did God make these parts of his brain extra durable?  Knowing the importance of these characteristics to me… more than academics, athletics or basically any other subject matter I can think of; being kind, caring and empathetic rank highest on my list… Do we as a family nurture that more?  Making him strongest in those areas?  Would he naturally have just been a good, nice kid had he not been stricken with Batten? I don’t know, but I can certainly say its makes him unique.  The child cannot add 1 +1 to save his life but wow, the way he can make you feel makes him a hero in my eyes.

Last Fall, we took a quick weekend trip to Universal and Disney; I took Steele and Magnus to Universal’s Halloween Horror Nights as a surprise to celebrate them just being really awesome boys and truly amazing sons and little brothers.  Helpful, good in school, and kind, they often stand in the shadows of their oldest brother. It was a special night focused on their interests and they loved it.

The next day, was Will’s day and we decided to dive into Animal Kingdom.  Will wanted to meet Baloo (the sloth bear from Jungle Book) and ride the Yeti ride.  By the time we got off the shuttle bus and into the park, Will was already exhausted and overheated.  This has become one of our biggest challenges.  Will is still very mobile but tires easily. We sit and rest a lot; we contemplated a wheel chair… but it seems none of us are quite ready to (even temporarily) to take that step and so we take “breaks” as Will needs them.

All because of Batten disease. My arch enemy.  I’ve spent everyday since June 24, 2009 fighting you; you awful, awful disease that seems to relish in wreaking havoc on my Will, especially on his “special” days. These rest breaks, a moment of pause, remind me of the severity of his condition.

I stare at him during these times; and think how much longer will we be able to deny the chair.  How will I explain to his brothers; how much quality of time do we have left?  Will he give up? Next time we are here, how will he be?

Then we start walking again; His sweet unsymmetrical shoulders that lean to the left; his shuffling feet while he pushes his cane ahead of him; his long bent legs that drag with each step; his green eyes bright because his constricted pupils are so small; profusely sweating, red faced and visibly uncomfortable. The stares all around of us; the looks of pity and some disgust; Thousands of people that don’t know him or our story, judging. There is so much judgement.   So much, I often joke with Will that I might beat someone with his cane one day (he thinks that is funny).

And just when he looks to stumble and reach for a rest; he composes himself and just KEEPS Walking.   He keeps moving forward to get to his next destination.

Amazingly, Will walked the entire time through Animal Kingdom; As we exited the park, he was wiped and I was holding him up (we had sent Wayne and the boys ahead to hold the bus in case we missed it) as we approached the shuttle bus stop and encouraging his every step.    He literally stumbled his way to the bench and collapsed, but he made it to the bench.

I took a moment and looked at him, really looked at him. He was panting and visibly exhausted.  I stared deep into those green sightless eyes that mirror my own.. and told him “I am proud of you. You walked the entire way.  You did it and you should be proud of yourself.” And with his sweet voice and his beautifully, imperfectly perfect Will-crooked smile, he replied “Thank you Mommy,” and put his head on my shoulder.  The lessons this kid teaches me… despite what life hands you, be grateful and gracious.

Just keep walking. Even when you can’t see the one step ahead of you, “walk by faith and not sight.”

Just keep walking. You may collapse when you reach your destination but if you stop too short, think of all you will miss.

Just keep walking. I often repeat these words to myself: “Just. Keep. Walking.”

How blessed we are to have the opportunity to keep looking and moving forward.  So many do not. So many stop short and don’t reach their destiny or don’t have the courage to take the first step.  Who would have thought a child stricken with a terminal illness, blindness and a degenerating brain could be the most powerful and bravest person I know.  In Joel Osteen’s word “victory is a head of you”… so just keep looking forward… and just keeping walking.

Believe in HOPE,  believe in yourself and always believe something amazing is about to happen! And of course, as always FIGHT BATTEN DISEASE!

Love and HUGS!

Missy

For more information on how to share Will’s story or join our fight:  www.willherndon.org.  #savewill