With all the recent attention on ALS through the Ice Bucket Challenge, I have a bit of renewed hope.
I watch as friends and families douse themselves in freezing cold water and post challenges on Facebook, Instagram an other social media avenues.
I'm encouraged as companies and world leaders take part in this challenge and nominate others to do the same.
I hope these people are making monetary donations and not just participating for the sake of personal publicity, but this sort of attention is phenomenal either way.
Her name is Heidi.
Hers is the beautiful face of an ALS Warrior.
For quite awhile, Heidi, Paula and I would carpool to a morning workout class together.
On the drive home, we would lament about the crazy thigh burn or how our abs were aching.
Then, Heidi began noticing something different.
Lifting the bar of weights off her shoulders after our step class was becoming nearly impossible.
She explained that despite regular rigorous workouts, she felt she was becoming weaker, not stronger.
A few weeks later, I looked into the wide, tear-filled eyes of my sweet friend at the bus stop.
We had just sent our children off to school, and my normally over-the-top cheerful friend answered my concern with a simple statement:
"I can't tie Jillian's shoes."
Jillian was her precious kindergartener. She had two older sisters, Shelby and Rachel.
All three girls were absolutely Heidi's heartbeat, along with her doting husband, Bill, and her dog, Lulu.
Heidi's diagnosis of ALS absolutely stunned our neighborhood community.
Most of us had no idea that this horrific disease would steal our Heidi.
Their family courageously exhausted every single avenue of hope for improving her health.
Bill kept a heart-wrenching blog of his front-lines journey to eventually walk Heidi home.
They suffered tremendously.
ALS is devastating.
With no cure and no real solution for helping those afflicted live a decent-quality, prolonged life, families affected by this disease are required to work to the point of exhaustion daily to care for their loved one.
They witness a beautiful, strong body atrophy before their eyes as the messages sent from the brain no longer reach the intended muscles.
They live with fear and anger and questions and frustration and exhaustion and mourning...
mourning what could and should have been.
Heidi did not want to leave her daughters and husband.
I remember her saying to me simply,
"If my family isn't with me in heaven, then that's no heaven at all to me."
Heidi was a fierce Warrior.
She made every single moment of her remaining life count.
She loved BIG and continued to laugh and joke until she could just barely whisper.
She thought constantly about her daughters and their futures.
She wondered about their one-day spouses and wedding gowns and life celebrations.
She also took a special trip with some of us to her hometown of Destin, FL.
It was important to her that we knew her story.
She's depending on us to tell the stories to her daughters.
We ate at the restaurant where she went with her prom date in high school.
She told us she wore a hot pink taffeta dress... so awesomely 80s!
We walked along the dunes that lined the beaches and she shared how her sweet mama, Eileen, would always sit a few dunes away from her and her high school friends, so the boys wouldn't have to know the girls were supervised.
We spent time with Heidi's mom and DooDah (stepfather), as well as her fabulous stepmother, Lisa.
We laughed and shopped and made memories.
I think we all knew how precious these memories would soon be.
ALS stole our darling Heidi on September 22, 2009.
There have been many moments since then when I feel her touch...
in the bloom of a sunflower
or the song of a bird outside my window.
I know her spirit lingers, even when it's impossible to once more share an afternoon freckled lemonade ("Mommy-style", as Heidi would say with a wink).
I am making another donation to ALS in honor of my friend.
I felt that giving you one small glimpse into the face of an ALS Warrior and her Warrior Caretakers might be more profound than another Ice Bucket Challenge video.
How you choose to help is irrelevant, but please get behind this cause.
Today is too soon to lose another precious warrior!
I love you and miss you, sweet Heidi!
xoxoxo
Love, Live and Create with intention,
Kristi