LIVING ALS OUT LOUD

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.  Untitled-1ALS 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

10 thoughts on “LIVING ALS OUT LOUD

    1. Thank you for sharing. Each day is indeed a gift. Watching the video brings tears of both sadness and gladness. What a testimony of your faith and commitment to love unconditionally. Praying.

      Liked by 1 person

  1. Tara and Jeff, your courage and forthright living are inspiring. Your faith in God’s goodness is so strong. And I just love to see your beautiful smiles! You are in my prayers daily.

    Liked by 1 person

  2. Tara and Jeff,
    You are right, this is so difficult to watch and I can only imagine what it’s like to live. I have a big lump in my throat for what you are going through. I also want to thank you for allowing us to see a glimpse of your life with ALS—the awareness it will bring to this dreadful disease is so needed. Your courage, your faith, and positivity are unmatched in my eyes. Please know that my family is constantly praying for yours. Much love.
    The Oliver family.

    Liked by 1 person

  3. That day in May certainly changed so many of our lives. I witness daily the gut-wrenching bravery that you both choose to encompass while navigating this ALS devastation. As painful as it is, your willingness to share this horrific journey out loud has opened the eyes and hearts of so many, who just like us, were minimally aware until it hit our family like a ton of bricks! We are now committed for a lifetime of working to shred ALS and help others who have been and/or will be affected by this disease. Through it all, we are so grateful to have an amazing community of family and friends standing firmly in the gap, knowing they will never waiver and will always be there. These people show up when least expected and always at just the right time. I know it’s you, God, who sends them. Daily we witness immeasurable compassion, generosity beyond comprehension and just plain loving human kindness. This video shows a very, very small glimpse into what your days are truly like; I can vouch for that; yet your love for God and for each other is shining through your broken hearts and the broken hearts of all who know and love you. You all are teaching me moment by moment how to live more beautifully no matter the circumstances. Thank you! I’ll never stop hoping and praying.
    XOXO Mom

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  4. Wow, Tara and Jeff. You two are such incredible people. I so admire your faith and dedication to finding the good times in every day. I am teary after watching your video, but very grateful that you are sharing, in order to raise awareness about this horrible disease. You all will be in my prayers!! Much love to you all.

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  5. Thank you for sharing your video on what it is like to live daily with ALS. I am my husband’s Dean caregiver and we have been living with the disease for almost 6 years. He stopped working two years ago and can only use is right thumb to control his wheelchair now. We try to find the good in each day that God gives us. May God bless you and your family!

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  6. Tara and Jeff: The gift you are to me is tenacious heart. The gift you are to me is openhearted love. The gift you are to me is vulnerability. The gift you are to me is the reminder that love abhors a vacuum. The gift you are to me is eye-opening courage. I stand with you, thankful for the reminder that today is my best day. With a grateful heart, I send you love and strength and power. Thank you for choosing life!

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  7. Tara and Jeff my heart goes out to you. I know all to well what you’re going through and whats ahead of you. My husband was diagnosed with ALS and through Gods mercy blessed us with 3 years of love and strength beyond all understanding. I was blessed to meet Jeffs sister and father in Florida, when they came to pick up the equipment given in love through my husband Ken. Prayers for you and your family.

    Liked by 1 person

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