It’s been a month and a lot has happened. ALS continues to progress and slowly take away the freedom of independence. We hope this new drug will slow the progression. In the meantime, we are living! We are loving! We are doing the best we can! Our best sometimes involves grilled salmon, quinoa and fresh mixed veggies coupled with a perfect fall dessert of caramel apples…and sometimes it’s Jimmy John’s take out. Our best sometimes involves laughing so hard it hurts…and other days a full cereal bowl is hurled at the wall, leaving behind shattered glass, milk, and cereal plastered on my walls and canvases. True story. I have a great left underhand throw! This is real life and it’s messy and beautiful.
- Jeff completed his first round of Radicava in September (14 daily IV infusions, followed by 14 days off).
- Jeff was fitted with a leg brace on his right leg to help his failing muscles and give him more stability. After hiking in Red River Gorge this past weekend on fall break, he noticed a tremendous difference in the aid that provided. We will order a leg brace for his left leg soon.
- Tara ran a 1/2 marathon.
- Jeff had surgery on 10/9 and now has a port in his chest where he will receive his IV infusions
- My twin brother, Brian, and Sarah had a baby girl!!!! She is named after Jeff (Remington Thomas Duncan). What an honor.
- We took the boys rock climbing in Red River Gorge for fall break
- Yesterday started the next round of infusions. Jeff’s meds are delivered to our home every 2 weeks. We have a home health nurse that comes to the house once a week to access his port. I learned how to give his infusion at home so I will take over that daily responsibility. We will infuse 10 days in a 14 day period, followed by 14 days off. This regiment will continue forever.
- Our home went on the market 3 weeks ago and we are finalizing an offer right now.
- We are downsizing to a ranch home that will be wheelchair accessible. We are moving to Westfield and will live with mom until our home is ready early Spring. There are a lot of changes coming our way, including new schools for the boys next year. Moving from Carmel Greyhounds to Westfield Shamrocks, baby! We sure could use two 4 leaf clovers!
Friends and family,
I don’t take lightly the time you spend reading what I have to say. I’m moved and touched and honored by it. I love the goodness that is in your heart and the desire you have to walk with my family, side by side, as we stumble in the dark. You give us daily reminders that we’re in this thing called life together.
You are a wondrous creation of Heaven. You are an angel on loan. Your impact on us is amazing and breathtaking. You matter. You are worth more to us than your human mind can imagine. Let that sink in and grow. Sit with it. Feel it. Know it. Believe it. You are breathing life back into our weathered soul. Just when we felt like the air escaped our lungs, our legs taken out from under us, solid ground shaken…you came in. You showed up. You called. You texted. Perhaps you wanted to call or text but didn’t know what to say so you just prayed. You shed tears. You sent a hand written card. You sent money, donations to medical expenses, and gift cards. You treated us to dinner, to a movie, to a date night. You saw the blank stare on my face and said “let’s go to Starbucks.” You pray desperately, fervently, without ceasing. You are a child, praying for “my man, Jeff” at dinner…and you don’t even know Jeff. You give me a hug…and not just a hug, but a tight embrace that says “I’ve got you.” I feel it. You send us on amazing family experiences…Mexico, Colts game, Pacers game, Tim McGraw concert, Bengals game, Kings Island. You said…”plan that vacation out west that you’ve always wanted to do,” and then paid for it. The airline tickets. The cabin in Red River Gorge and then mentoring our boys on the rock wall. The couples massage. The condo in Florida. The family photos we will forever cherish, adore and remember. You picked up Evan and Cole and took them to climbing practice. You brought them home. You fed them. You are working on fundraisers. You stepped inside our pain and you saw the hurt in our eyes. You got uncomfortable and said “I’m here…for anything…anytime.” You made us home cooked meals, you brought flowers, you mow our lawn, and pull weeds. You clean our home every month. You offer to help pack. You offer to help us move. You offer to sit with Jeff during infusions or even change his IV. You offer equipment, tools, and resources. You participate in attorney meetings, estate planning, financial planning, future planning…You leave your home in FL after 20+ years, uproot and move to Carmel and say “whatever you need, I’m here.” You love us. You are noticed, loved and appreciated more than we have words to express. Please, please, please know that nothing is unnoticed. Nothing. We haven’t begun to scratch the surface of reaching out to say thank you. Oh but we are brought to our knees at the love pouring in.
We live day to day and our tasks are many, but we think of you often. From the bottom of our broken, grieving hearts, THANK YOU! We see and feel God working in all of this. We will continue to place one foot in front of the other. We will wake up every morning and simply give it our best shot! I recently heard this quote “We are all just walking each other home.” Our life is brief this side of eternity…we spend so much time planning for our existence in this life, but think about the time you have here, on Earth, in comparison to eternity. We will live forever. Forever. Let’s plan for eternity. Are the people in your life helping you or hindering you? Surround yourself with people who will help walk you home. This world is not my home. Will you walk with me? I’ll walk with you too. Let’s do this, together!
We love you and are forever…FOREVER…grateful for you.
Tara and Jeff