One year ago tomorrow, March 3, 2017, the phone call came. Jeff was at work and I had just finished teaching a fitness class. The Neurologist was about to issue her verdict, and our future hung in the balance. Momentary silence. A deep breath. “Your EMG results are in and I’m referring you the ALS Clinic.”
One minute you’re driving down the road singing and dancing to a beautiful life, and the next moment the car spins dangerously out of control. URGENT.
I think about my boys and the great responsibility I’ve been given as their mother. They have souls that will last forever and I only have a limited time to impact their lives for good. URGENT.
Jeff spends 40+ hours a week at work. Evan and Cole spend 35 hours a week at school and 12+ hours a week at the climbing gym. I spend countless hours teaching, working, and managing the activities of my home, children and husband. Our weekends are packed. Too often we get caught up in the busyness of life that we can miss the glory and splendor of Jesus Christ right in front of us. “Wake up Tara, don’t miss it!” URGENT.
Your life is meaningful. Your life has purpose. Your life has precious value. What is the true significance of life? I believe it is to know God, to love God and to reflect God. He is more valuable than anything this world can offer. Don’t miss it, don’t waste it. URGENT.
We want to live with urgency. We want to stop wasting energy with inconsequential and meaningless activities. Life and death hangs in the balance. The kingdom of God is just around the corner. It’s coming. It’s expected. It’s anticipated. AND…it’s meaningless when our lives fail to reflect that urgency.
It’s been exactly 2 months since I’ve written. Life is a bit challenging, but we face it each day with strength, bravery and courage. Jeff’s attitude is encouraging and soothing to my grieving heart. He makes me a better person! We face difficult decisions on a daily basis. There is always something to do, paperwork to sign, research to be done, new things to learn, meds to administer, or daily care-taking. But, I’ll never forget these words that Jeff recently spoke to me…and it’s now engraved on my heart…”I want Evan and Cole to see that no matter what life threw at us, we did it well. We are happy, we are strong, we fight, we LIVE and we love hard.” So that’s what we’ll do. We will entertain the sadness and grief and anger as it comes…and then we’ll tell it to move aside because we’ve got a life to live well.
We want you to know that every card, email, text, and phone call is so meaningful to us as we face the fear of the unknown. I’ve mentioned before that I knock on heaven’s door all day long. My simple prayer lately has been “God, please show up in a BIG way.” He sure has done that through all of you.
The Shred ALS shirts were a huge success and hundreds of shirts are now scattered across the nation. From the beach to the mountains. From the east coast to the west coast. From the pilates studio, shred415 studio, boxing gym and track team. It absolutely brings a smile to our face every time we see you post an image on social media wearing your shirt! We have a front row seat to the goodness in this world and it’s awe-inspiring to see. We feel you behind us!
*Shred415 (fitness studio in Indianapolis, IN) poured their hearts into us and hosted a fundraising event this past weekend. I’m still speechless at the way clients, co-workers, and friends showed up and loved on us. It was so powerful. God showed up. God showed up in a BIG way and he’s moving mountains.
*”SHRED” has completely different meanings for SHRED ALS and Shred415. Shred415 graciously allowed us to use a portion of their name because of the special bond and impact the community has had on our family. “Defeat ALS” and “End ALS” already exists and “Shred ALS” has a similar, yet powerful message. We need a world without ALS. Let’s SHRED ALS!
Check out this short clip: SHRED ALS YOU TUBE VIDEO (I’m missing a ton of photos!)
The Shred ALS t-shirt fundraiser raised $9,000 and the Shred415 fundraiser raised another $9,000 for a total of $18,000! Jeff’s power wheelchair ($22,000) cost us $4,500 out-of-pocket after insurance coverage. We will purchase a used van in the next few weeks and the wheelchair conversion is approximately $20,000. We will continue to keep you posted on the specific ways you are helping our family in a BIG way. With all that we have, thank you for your generosity. We will never forget your kindness. We certainly couldn’t do this without you!
Jeff’s power wheelchair arrived in late January. The progression continues at a steady rate and he uses it daily in our home but he’s not quite ready for full time use. His niece and nephew (Britton – age 3 and Kensington – age 5) climb aboard and throw their arms up high for wheelchair races in the house! He’s a great uncle!
Jeff is still walking, but can no longer do stairs and needs help getting into and out of bed, along with standing from a seated position. His core, arms and legs are weakening significantly, but his lungs and speech remain strong! PRAISE. Jeff is still working full time, however, once he goes on disability, the kids and I come off his insurance (there’s always something to navigate!). Therefore, I will return to work full-time so that there is no lapse in insurance coverage. Jeff is still driving, but we all take turns buckling him in and starting the ignition. We are a team. We are so thankful for the weekly help from friends and family that assist with Evan and Cole’s active schedule. This allows Jeff and I to have more time together (or simply a relief from all the other daily tasks) and that is a priceless gift.
Jeff brings so much joy to my life (along with everyone else privileged to know and love him) and we are learning to love the life we never wanted. We laugh, we smile, we cry and we embrace what is in front of us. We have seen firsthand that God can use our greatest heartache. He can work through our greatest trial. He can reveal himself through our greatest pain. You see, God is always at work. He shows up in unexpected places, at unexpected times, and in unexpected ways. He shows up in a BIG way.
All our love,
Tara & Jeff