The Real Challenge

The ice bucket challenge.

Its been everywhere and yet I still don’t know enough about ALS. I haven’t lived through it personally with a loved one, but like many of you, I have become much more aware of the disease, which I think is a very good thing.

I do believe that fundraising campaigns that also build awareness are important. I keep hearing things like “slactivism” or other controversies over this one. But honestly without awareness of a cause, there are no funds. No one will donate. No one will volunteer. Nothing will get done.

Awareness needs to come first.

So now that we’re all becoming much more aware, I wanted to invite my friend Colleen who lost her brother Kevin to ALS in 2013 to share her story, and her own Ice Bucket Challenge.

Kevin, Colleen (left) and their other brother and sister at the Walk to Defeat ALS in Lafayette, LA in 2011

Colleen and I went to college together in New Orleans many moons ago. She is someone I truly admire. Colleen is a wife, mom, homeschooler, missionary and writer. She currently serves alongside her husband and five sons as a founder of the non-profit St. Bryce Missions and is part of the ground team in Tayutic, Costa Rica. Colleen lost her sixth son Bryce to SIDS in 2009 (at just over 3 months of age) and in January of this year she shared her story here on the blog about mental health after infant loss and miscarriage. She blogs at Blessed are the Feet: My Missionary Journey.

I am so honored to have Colleen back on the blog today. She has a new challenge for you, and this one is the real challenge.

The Real Challenge

By Colleen:

Today I’m taking the ALS Ice Bucket challenge but instead of challenging anyone new, because, quite frankly, I think anyone who wants to do it has probably already done it, I am going to challenge everyone who has ALREADY done it, to do three things:

1. Actually write the check as promised. We are asking people to consider making their donation to Team Gleason: www.teamgleason.org/

2. Find the local ALS chapter near you, and get involved in some way. Go to the Walk  to Defeat ALS, or connect with the local support group and get connected to a local family battling the disease and pitch in in some way. ALS Guardian Angels is one example, they were a huge help and support to our family: www.alsguardianangels.com/

3. Set aside $10/month to donate to some charity. Find out about a need you didn’t know much about. Share it with 3 friends and ask them to donate too. Make changing the world a habit and not just a fad.

Colleen’s Family History with ALS

My brother Kevin lost his battle with ALS in March 2013, one day after turning 53. He left behind a beautiful wife, five amazing kids, three daughters-in-law and three beautiful grandchildren. And a mom, four siblings, and slew of nephews and nieces who loved him like mad and missed him like crazy.

Kevin with his siblings, mom and aunt just before his diagnosis, when we first began to notice his symptoms

During Kevin’s three year battle with the disease, it robbed him of his ability to walk, to stand, to dress himself, to scratch his own itches, to move his hands, and eventually to breathe on his own. In the end, it robbed him of his life.

But it did not take away some things: his faith, his trademark sense of humor, and his ability to inspire and lead others. Kevin refused to let ALS define the life he had left to live after his diagnosis, and he refused to let us mourn while we could still make merry.

ALS is the most awful disease I have ever witnessed. Watching someone deteriorate before your eyes, knowing they are fully aware of what they are losing, what the inevitable end is, and having to find the will to fight, can be inspiring but also heart-breaking. We lived a lot of days that were both.

Kevin toward to the end of his battle when we was using a ventilator

Colleen shared her thoughts on Kevin’s life and his final days in this blog post: www.blessedarethefeet.com/if-i-got-to-pick/ “I do not have a family that has followed a cookie cutter path. We touch every point on the spectrum when it comes to personalities and temperaments, life choices, and religious, spiritual and moral orientations. But I am blessed beyond belief with a family who knows without a doubt how to love fiercely and stand in unity despite those differences. And I believe a large part of our ability to do that was won as we watched my brother live and fight his battle with ALS with that as his only priority — to love well, to point people to the love of Christ, and to live with unbounded joy.”

Colleen’s family making a memorial presentation and donation to Team Gleason in honor of Kevin in September 2014

Every 90 minutes someone dies from this awful disease.

I feel so certain that a cure is not far away and that the attention and funds this challenge has garnered for the organizations researching the cure will push us so much closer to that goal than we ever could have dreamed before.

I am truly grateful for everyone who took the ice bucket challenge and donated to help fund research for a cure for this disease. But I also urge you to consider doing more. Not only for ALS, but for other causes that you care about.

What is it like to live with ALS? 

Colleen’s brother Kevin kept a blog while fighting ALS. To gain more insight into what it was like for him, please  feel free to read through his posts. To the very end, Kevin kept up his sense of humor and positive attitude, which is so evident in his writing. alsucksobservationsfrommylifewithals.blogspot.com/