WOW!!! Thank you all SO MUCH. you helped me surpass my goal. I’ve upped my goal and look forward to raising more for the best cause there is! - Tori
My Cystic Fibrosis Story
Tori Waters
Fundraising for Indianapolis Great Strides
Tori Waters
My Cystic Fibrosis Story:
I don’t remember much of the early days. But what I do remember, are the constant walks through Riley Hospital - I can still picture it all. Those glass elevators I so badly wanted to get on, the GIANT stuffed animals up high in the lobby where there was water freely flowing, and the crunch of Necos and a gummy candy meal platter - just ask my mom about that one - I can still feel each needle prick I’ve received in my lifetime like it happened an hour ago. That was just the beginning.
I truly began to understand as I got older. Missed sleepovers, missed holidays (mostly Halloween, man my body didn’t like Halloween - I was always sick, lol), missed school days and more. It got old. Fast. Countless hours of treatments, thousands of meds. I started to tell myself, “What is this even doing?” I had those thoughts for years. Eventually, those thoughts consumed me and they turned into “why am I wasting my time when my life is short anyway?”. I can remember asking God many times, “Why is this my life? I don’t want this. Why did you choose me for this life” his response was always the same, “Be patient my child, I will show you”. Well, I didn’t like that answer. I didn’t want to be patient - it felt like that was always the answer.
So, I fought back. Hard. I became what the doctors call “non-compliant”. I didn’t take my meds & I stopped doing all treatments when I was about 15 because I saw no point and God wasnt giving me the answer I wanted WHEN I wanted. When I turned 16, I kept going down a long road. I dropped weight, my functions rapidly decreased but still, I didn’t care because I wasn’t given the answer I wanted of “Why?”
When I was 17, I was still non compliant. Still didn’t care. Didn’t see a point because I never “felt a difference” after my treatments. I started dating Blake at this point and while I don’t remember what I told him, I know I wasn’t truthful about what my doctors were telling me to get him to side with me. Wellllll, my mom called my bluff on that one and got sneaky and they were in cahoots without me knowing. It came to a head one day and I wasn’t treating my mom well at all and I told Blake to leave. He didn’t. He circled back and marched his butt right back in the house and held me down so hard. And the words he said still ring. “Victoria Jean Fehr, I refuse to live my life without you by my side. So knock this off” - only then did I start to wake up. Only then did I start to hear, “be patient my child, it’s almost here.”
Well, the day came for my annual x ray. I saw it. I saw the dark spots in my lungs. The damage. The damage I created over the past two years. The damage that was completely irreversible. I did that. I let the damage in. ME. I sobbed. HARD. I heard “Be patient my child - it’s even closer now”.
When I was 17, I fell in love. It wasn’t that “I love you” type of teenage love. It was the hard “I can’t imagine my life without you” type of love.
“Be patient my child - it’s nearly there”
When I was 18, I went to college. Busted my butt with school, my meds and my treatments. When I was 19, I sent the man I loved to the Air Force. But when I was 19, I also got engaged.
“Be patient my child - you’re so close”
When I was 21, I graduated college. When I was 21 I married the best man I’ve ever known. When I was 22, I landed my dream job as a kindergarten teacher.
“Be patient my child - you’re even closer”
When I was 24, I started Trikafta and my lung functions soared. The years of neglect I caused were returned to me when I grew 25% in my functions. When I was 24, I got pregnant.
“Be patient my child - you’re nearly there”
When I was 25, I became a mother. I became a MOTHER. When I was 27, I learned I was going to be a mother to another daughter.
“You were patient my child - you are there”
You see, my life does have a point. I was chosen for this life because God knew my path before I did - I get to raise two beautiful girls with the man I love all while living my dream of being an educator. There IS a point - there always was a point but I chose not to trust because I didn’t want to be “patient.” Boy am I glad I was patient. My life is everything I never realized it could be.
My CF does not define me. But it is WHO I am - I get to use my diagnosis as a way to show that life is precious and every SECOND counts. You dreams matter. Be patient - you’re nearly there.
_______________________________
March 8, 2025: I reached a new milestone.....
30 💫🕊️🍾🤍🌹
When I was diagnosed with Cystic Fibrosis in 1997, this decade wasn’t believed to be in the cards for me + many others. It was always a milestone that seemed so far away and so dark to me. It’s here + so am I.
Here’s to continuing to reach milestones, being 30 + choosing myself more in this new decade. Forever blessed with the life I live day in + day out.
Cheers to my thirties + Cystic fibrosis research getting me to this day
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
I don’t remember much of the early days. But what I do remember, are the constant walks through Riley Hospital - I can still picture it all. Those glass elevators I so badly wanted to get on, the GIANT stuffed animals up high in the lobby where there was water freely flowing, and the crunch of Necos and a gummy candy meal platter - just ask my mom about that one - I can still feel each needle prick I’ve received in my lifetime like it happened an hour ago. That was just the beginning.
I truly began to understand as I got older. Missed sleepovers, missed holidays (mostly Halloween, man my body didn’t like Halloween - I was always sick, lol), missed school days and more. It got old. Fast. Countless hours of treatments, thousands of meds. I started to tell myself, “What is this even doing?” I had those thoughts for years. Eventually, those thoughts consumed me and they turned into “why am I wasting my time when my life is short anyway?”. I can remember asking God many times, “Why is this my life? I don’t want this. Why did you choose me for this life” his response was always the same, “Be patient my child, I will show you”. Well, I didn’t like that answer. I didn’t want to be patient - it felt like that was always the answer.
So, I fought back. Hard. I became what the doctors call “non-compliant”. I didn’t take my meds & I stopped doing all treatments when I was about 15 because I saw no point and God wasnt giving me the answer I wanted WHEN I wanted. When I turned 16, I kept going down a long road. I dropped weight, my functions rapidly decreased but still, I didn’t care because I wasn’t given the answer I wanted of “Why?”
When I was 17, I was still non compliant. Still didn’t care. Didn’t see a point because I never “felt a difference” after my treatments. I started dating Blake at this point and while I don’t remember what I told him, I know I wasn’t truthful about what my doctors were telling me to get him to side with me. Wellllll, my mom called my bluff on that one and got sneaky and they were in cahoots without me knowing. It came to a head one day and I wasn’t treating my mom well at all and I told Blake to leave. He didn’t. He circled back and marched his butt right back in the house and held me down so hard. And the words he said still ring. “Victoria Jean Fehr, I refuse to live my life without you by my side. So knock this off” - only then did I start to wake up. Only then did I start to hear, “be patient my child, it’s almost here.”
Well, the day came for my annual x ray. I saw it. I saw the dark spots in my lungs. The damage. The damage I created over the past two years. The damage that was completely irreversible. I did that. I let the damage in. ME. I sobbed. HARD. I heard “Be patient my child - it’s even closer now”.
When I was 17, I fell in love. It wasn’t that “I love you” type of teenage love. It was the hard “I can’t imagine my life without you” type of love.
“Be patient my child - it’s nearly there”
When I was 18, I went to college. Busted my butt with school, my meds and my treatments. When I was 19, I sent the man I loved to the Air Force. But when I was 19, I also got engaged.
“Be patient my child - you’re so close”
When I was 21, I graduated college. When I was 21 I married the best man I’ve ever known. When I was 22, I landed my dream job as a kindergarten teacher.
“Be patient my child - you’re even closer”
When I was 24, I started Trikafta and my lung functions soared. The years of neglect I caused were returned to me when I grew 25% in my functions. When I was 24, I got pregnant.
“Be patient my child - you’re nearly there”
When I was 25, I became a mother. I became a MOTHER. When I was 27, I learned I was going to be a mother to another daughter.
“You were patient my child - you are there”
You see, my life does have a point. I was chosen for this life because God knew my path before I did - I get to raise two beautiful girls with the man I love all while living my dream of being an educator. There IS a point - there always was a point but I chose not to trust because I didn’t want to be “patient.” Boy am I glad I was patient. My life is everything I never realized it could be.
My CF does not define me. But it is WHO I am - I get to use my diagnosis as a way to show that life is precious and every SECOND counts. You dreams matter. Be patient - you’re nearly there.
_______________________________
March 8, 2025: I reached a new milestone.....
30 💫🕊️🍾🤍🌹
When I was diagnosed with Cystic Fibrosis in 1997, this decade wasn’t believed to be in the cards for me + many others. It was always a milestone that seemed so far away and so dark to me. It’s here + so am I.
Here’s to continuing to reach milestones, being 30 + choosing myself more in this new decade. Forever blessed with the life I live day in + day out.
Cheers to my thirties + Cystic fibrosis research getting me to this day
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
APR
10
10
APR
8
8
Cheers to 30!
thirty!
Walk 2024
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