Losing My Sister to CF

Since the loss of my sister to cystic fibrosis, grief has hit me in waves. Sometimes it feels as though I can't breathe. Despite this, I have been able to function and keep going. That is what Claire would have wanted me to do.

| 6 min read
Kendall Booth

“As for grief, you'll find it comes in waves. The waves never stop coming, and, somehow, you don't really want them to. But you will learn that you'll survive them. And other waves will come. And you'll survive them, too. If you're lucky, you'll have lots of scars from lots of love. And lots of shipwrecks.” - Anonymous

12:44 p.m. A time that is permanently singed into my memory. A stinging pain that overcomes me every time I see it on the clock. A burning scar. My heart skips a beat. A physical ache. A moment of breathlessness. I still hear the nurse's voice so clearly in my head. “Time of death: 12:44pm.”

It's been 244 days since I lost her. 244 days since a piece of me left with her. My little sister, Claire. My baby sister. I knew it would come, but I wasn't ready. I know now that I never could have been ready. Never could have been fully prepared for the anguish that comes with loss. The deep physical pain I feel when I remember that she's really gone. I've never felt so wounded. And yet, I'm still standing. How is that possible?

Claire (left) with her sister Kendall.

Having a sister with a terminal illness has always been mentally challenging for me. Throughout my life, any time I told someone that my sister had cystic fibrosis, the response was always “I'm so sorry.” I never understood that. Of course, I appreciated the words. But I was never able to fully process that “terminal” meant death. An unavoidable fate. An inevitable conclusion.

To me, Claire was infinite.

There was nothing that could stop her. I saw her distress and suffering and pain first-hand. And it was torturous. But she always pulled through. She always fought like hell. She had cheated death before. She'll cheat death again, I thought. I could never consider the alternative. My mind wouldn't allow me to. We're so close to a cure. One day she'd be freed from the grips of this disease. I couldn't call it hope, because I knew it. I was sure of it. Until I wasn't.

They say that grief comes in waves, and I've always wondered what that meant. Now I know. And there is no better way to describe it.

At first, you're lost in a fog. A haze of denial. Like you're trapped inside of a lucid dream. And all the while, you feel the wave brewing. Little stings of pain churning in your heart. Little moments when you're able to touch reality, but only for a second. Your body won't allow you to. Your mind won't allow you to.

You cling to photos, videos, and songs -- things that keep her alive. You're able to block out the world and the future. You're able to just be in that moment with her. Like nothing else exists. But the wave is still brewing, even faster than before.

Then, the tidal wave comes. It's so unexpected. It crashes around you, and you're unsure if you'll make it out alive. Drowning in the weight of reality. I never expected the physical pain. The deepest feeling of sorrow, like you got the wind knocked out of you. You can't catch your breath.

Every memory and every word and every reminder comes flooding around you. And all you can do is try your best to survive the shipwreck. All you can do is float.

In the beginning, the waves crashed hard and without mercy. I wondered if I'd ever be myself again. I couldn't talk to people. I couldn't get out of bed. I questioned my faith. How could God do this to us? To her? A 24-year battle to breathe, to live. For what? Why her? She was too good for this. She didn't deserve this. This unavoidable fate. This inevitable conclusion.

I was so angry. All of the wasted suffering. I dreaded the future. All the moments that should be so sweet -- family vacations, getting married, having kids. It all seemed so bitter. I never pictured myself being truly happy again. A constant stream of waves crashing into me. I couldn't catch my breath. But somehow, as time moves on, the waves become less frequent. They still come, but further apart.

You can function. You can breathe. In some moments I wondered if it was possible to keep going. But you just do. You just keep floating. And that's what she would want.

I still see her in my dreams. It's always the same scenario. She and I sitting, just talking. It's not a moment from the past but a moment from the present. A few months after she passed away, I dreamed that we were hugging. The dream lasted a while, and all we did was hug. I cried into her shoulder. But she wasn't crying. She was comforting me, saying that “everything is going to be OK.” Just like what she would do if she were here. Always reassuring me that no matter the circumstance, I was going to be OK. It was so real. My mom, dad, brother, and countless friends of hers have had the same dream. The same scenario. They are sitting down, in the present, just talking.

Last week, in a dream, I told her that I missed her. She responded, “I miss you, too. But we can talk to each other like this.” I woke up, tears streaming down my face. I no longer question my faith. I no longer question where she is. I just know.

Moments like this trigger the waves. But I'm thankful for them. Moments like this serve as a reminder for me.

Claire is infinite.

And she always will be. I know the waves will never stop coming, and, somehow, I don't want them to. Because it keeps our love alive. Other waves will come, and I'll survive them, too. And if I'm lucky, I'll have lots of scars from lots of love. And lots of shipwrecks.

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Emotional Wellness

Kendall is the older sister of Claire, who lost her 24-year battle with cystic fibrosis in June 2020. A graduate of Louisiana State University, Kendall now works as chief operating officer for her family's company in her hometown of Baton Rouge, La. She is an active philanthropist in her community and spends her free time doing what she loves most -- fundraising for cystic fibrosis. In 2020, Kendall was named the top fundraiser nationwide for Capital City's Finest and was also selected as the Louisiana Tomorrow's Leader award recipient by the CF Foundation. Follow her blogFacebook, or Instagram.

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