Editor’s Note: Patient Worthy is pleased to share the final part in a series of excerpts by Dana Langston.
Chapter 36: Holding the Line
Knowing the surgery won’t happen until spring means another season of my husband and my brother-in-law slaving over that ’95 Corolla just to get me to appointments. It means another season of my sister with MS doing our laundry because I physically cant. It feels like I’m asking them all to run a marathon that has no finish line. But in this house, we dig in. We don’t have the luxury of giving up. If the doctors say April, then I have to find the stubbornness to make it to May. I have to trust that the LifeVest will do its job and that my village will keep hitting that “Share” button for our CaringBridge, PayPal, and Cash App. The wait is long, but I’m still here, fighting for every beat.
They say that grandchildren are the crown of old age, but at 49, my crown is scattered across the miles. While I sit here in my recliner in Kentucky, tethered to my LifeVest and counting out my 12 pills, my heart is really in Iowa and Utah with my grandbabies.
Kaiden, Braiden, Emmary, Hailey, and Ellie.
When you have a 20-25% ejection fraction, the distance between us feels like more than just miles on a map; it feels like a physical ache. I want to be the grandma who is down on the floor playing, the one who is baking cookies and chasing them through the yard. Instead, our relationship lives inside the blue glow of a cell phone screen.
Chapter 37: The Video Chat Lifeline
Video chats are the only way I get to see those growing faces. I watch them through a lens, blowing kisses to a screen and trying to memorize every new tooth and every changed hairstyle. We laugh, and they show me their drawings or their new toys, but when the “End Call” button is pressed, the silence that follows is heavy. The depression of being sidelined is never louder than when I realize I can’t reach through that screen to give them a real hug.
Chapter 38: The Long-Distance Worry
It’s hard to be the grandma who is “sick.” I don’t want their memories of me to be a woman who is always sitting down, always winded, and always wearing a bulky machine under her shirt. I want to be their strength, just like my youngest, Jonathan, is mine. But as I wait for this April surgery— knowing it won’t even raise my EF number— I have to accept that for now, my love has to be loud enough to travel over the mountains and across the plains.
Chapter 39: Fighting for the Future
I’m fighting this “waiting game” for them.
I’m swallowing the shame of sharing my PayPal and Cash App because I know that surviving today means a chance to see them tomorrow. I want to make it past April, not because it will “fix” me, but because it gives me more time to be their Mommaw, even if it’s through a video call. Kaiden, Braiden, Emmary, Hailey, and Ellie are the reasons I keep my head up when the depression tries to pull it down. They are the light I’m reaching for, one digital hug at a time.
While my phone lights up with video calls from Utah and Iowa, there is another kind of silence that weighs just as heavy on my 25% heart. I have nine grandchildren in total, but there are four whose voices I don’t get to hear through a screen. Due to the complicated tangles of life and the distances that aren’t just measured in miles, they live with other parents, and our days aren’t filled with the “blue glow” of a chat.
Chapter 40: The Quiet Ache
To those four precious souls: even if I don’t get to see your faces every day or hear your laughter through a speaker, you are folded into every prayer I whisper. Being “sidelined” by this viral infection has given me a lot of time to think about legacy. It’s a specialized kind of heartbreak to be 49, facing a surgery in April, and knowing there are parts of my family tree that I can’t reach out and touch. The depression of heart failure isn’t just about the fatigue; it’s about the “what ifs” and the “if onlys” regarding the grandchildren I carry in my spirit but can’t hold in my arms.
Chapter 41: The Hope in the Wait
I’m fighting this battle for all nine of you. Every one of those 12 pills I swallow and every itchy hour I spend in this LifeVest is an investment in a future where maybe, just maybe, the paths will cross again. I want to be here for the day the silence breaks. I want to be the grandma who stayed, who fought, and who kept a place at the table for every single one of her grandbabies, regardless of where they are sleeping tonight.
Chapter 42: A Legacy of Love
To my four who are growing up out of my sight: you are not forgotten. You are the silent beat in my 20% rhythm. I am doing the hard work of surviving this “waiting game” because I want to leave behind a story of a woman who never gave up on her family. Whether we are talking through a video screen or through the quiet of my heart, you are my motivation. You are part of the reason I keep hitting “Share” on my CaringBridge and asking for the village to help us make it to April. I’m not just fighting for my life; I’m fighting for the chance to one day tell all nine of you how much you were loved.
To my nine precious grandchildren—the ones I see through the blue glow of a screen, the ones I hold in my daily prayers, and the ones I haven’t yet had the chance to hold again:
I am writing this from my recliner in Kentucky, with the “gong” of my LifeVest and a table full of pills as my company. I want you to know that your Mommaw is a fighter. At 49, I didn’t expect my heart to stall at 20-25%, but I also didn’t expect to find the kind of strength that only comes when everything else is stripped away.
Chapter 43: The Lesson of the 25%
I want you to grow up knowing that “strong” isn’t always about being the loudest or the fastest. Sometimes, being strong is just waking up and choosing to try again when your body says “I can’t.” It’s watching your uncle Jonathan fight Stage 5 kidney failure with a mechanical heart valve and realizing that a “machine-heart” can still be full of more love than a healthy one. It’s watching your Grandpa and your
Great-Uncle slave over a 95 Corolla just to get me to a doctor.
Chapter 44: Love is a Verb
I hope you remember that love is something you *do*. It’s my sister—your Great-Aunt—doing our laundry while she fights her own MS. It’s the friends who share my CaringBridge and GoFundMe because they won’t let us be invisible. I am swallowing my pride and asking for help every day because I want more days with you. I am enduring the “April Wall” and the long wait for a surgery that won’t even fix my numbers, just so I can be the woman who stayed.
Chapter 45: My Promise to You
No matter where you are—whether you are in Utah, Iowa, or right here in my heart— you are my “why.” You are the reason I fight the depression and the fatigue. I want you to look back at this chapter of my life and see a woman who was sidelined but never defeated. I want you to know that I never gave up on a single one of you.
I am living in the 25% so that I can give you 100% of my love for as long as God allows.
You are my crown, my joy, and my future. Keep fighting your own battles, my sweet nine, and know that your Mommaw is right here, cheering you on with every beat I have left.
Chapter 46: A Letter of Grace – To My Village
- To my Husband: I see you under that car in the heat. I know you lost your job because you chose to stay by my side when my heart stopped. You are the bravest man I know, and I am sorry for the weight you carry.
- To my Sister: You fight MS every day and still do our laundry and care for our animals. You are my hero, showing me every day that a body in pain can still be a vessel of incredible love. To my Brother-in-Law: Thank you for being the hands, the feet, and the wheels we needed. Thank you for slaving away on that car and running us wherever we need to go without a single complaint.
- To my Sons (Brett, Joshua, and Jonathan): You are the reason I put this vest on. To my youngest, Jonathan: your strength gives me mine. I am so proud of the men you are.
- To my Nine Grandkids: You are my joy. I am fighting for every sunset and every milestone I get to see with you. To our Friends and Family: Thank you for the phone calls and the companionship. You realize the struggle we are going through, and you refuse to let us be invisible. Your kindness is the fuel that keeps us going.
