May is ALS Awareness Month. It’s also exactly 1 year after we received a 2nd opinion confirmation from the Mayo Clinic regarding Jeff’s diagnosis. Life has changed quite drastically over the past year and we have literally gone 100 mph making plans and preparing for what lies ahead of us.
Jeff recently said to me “TODAY” is the best day we’re going to have.” Let that sink in. Powerful. Today. Today is the best day. So as we rise each morning, exhausted from the restless night before, and before our feet even hit the floor, we will engrave this on our hearts and minds: “Today is our best day.” And that’s how we will choose to live. It’s a blessing to do life with this man. ALS AWARENESS:
Many people have sent me private messages such as “Jeff looks great in the photo!” He absolutely does, but what people often don’t realize is that he was lifted out of the wheelchair for that image. Or “I read your blog and I see the words written, but it wasn’t until I saw it with my own eyes that I started to understand what ALS does and what you are going through.” “What is ALS?” “Tell me about your day?” “Does it hurt?”
Jeff and I agreed from the beginning to LIVE ALS OUT LOUD. To “live out loud” means to live with purpose. Our desire is to be genuine, authentic and to live with passion no matter our circumstances. As you know, ALS is an incurable disease that slowly robs the body of its ability to walk, speak, swallow and eventually breathe. It is always fatal. Jeff has painful muscles cramps in his hands and feet, but other than that, there is no pain…he just can’t move. His mind is sharp, but the messages from his brain to his spinal cord to his muscles are slowly short circuiting (or dying). When messages are not sent, the muscles gradually weaken, twitch and waste away (atrophy). Eventually the brain loses its ability to initiate and control voluntary movements. Most people die of respiratory failure within 2-5 years from when the first symptoms appear (we are almost 18 months from the first symptoms, which was shoulder weakness). Our purpose is to create awareness. Without awareness, there is very little funding. Every 90 minutes someone is diagnosed with ALS and every 90 minutes someone loses their life to ALS. We must help create a world without ALS!
This video will give you a small glimpse into our daily life. As I have mentioned before, it’s difficult to watch (or read updates of declining health) and even more difficult to live it. Our days are very challenging…we run the gamut of emotions but our family draws strength from our solid faith and trust in our Lord and Savior, Jesus Christ. We hope to encourage you to be a light to others. Life is full of hills and valleys. We will all cycle through them all. Link arms with someone, strap on your hiking boots, and go for the journey with them. Change someones life, simply because they know YOU.
All our love,
Tara and Jeff