Josephine Rae Dumonceaux was only 20 years old when God called her home. My heart is still broken. I was honored to give her eulogy. It was one of the hardest things I have had to do. I almost couldn’t do it. The crying was constant through out. Below are the words I said to celebrate her short life.

Hi everyone, I am very sad to be here, but I am honoured to speak about our girl Josephine. Who the heck am I you ask? Well simply put I am her kindred spirit. My name is Nicki and I also have cystic fibrosis. Even though there are 30 years between us we lived our lives as friends. Only once in a while did I pull the mother card and give her heck for not listening to Nicole or doing her meds. She didn’t need an authority figure, so I got to be 16 again. What is unique and tragic about our relationship is that we could never be in the same room as each other. Reason being is because CF patients can pass their very specific pathogens to each other and wreak havoc, with very dire consequences. We have never been able to give each other a hug but we still had a very strong connection without being in the same room ever!

I met her grandfather, Charlie, 8 years ago at a fundraising event. He knew I had cystic fibrosis as he attended an event that I received an award at. He told me about his two grandchildren born with CF, Josephine and Jamie, he also told me that Jo has had a very hard life. He told me that he had a very special relationship with her. Charlie and I had several lunches before he passed away. I was at his funeral then and now 6 years later I’m at his granddaughters. I find solace knowing she is up there with her two grandpas and her loving pooch lucy. They can get into so much fun trouble now! She is also living a new life in a new healthy body, so she no longer has to struggle.

Every breath you take, you are getting closer to the grave. But every breath you take, you can also get closer to liberation

There is nothing fair about today, nothing fair about living through a constant barrage of challenge after challenge just to do that one simple thing…to breathe. There is nothing fair about the gentlest and kindest soul having to fight her way through life.

“Fairness doesn’t govern life and death, if it did, no good person would die young”

So how did she and I meet? Well, 3 years ago through divine intervention we started talking on Instagram. I became instantly intrigued by her. She was feisty, witty, funny and just oozed kindness. I told her my CF story and she told me hers. We swapped stories about how much a certain test or procedure hurt and how good some of the drugs they used were. We loved us some fentanyl. We laughed and cried over so many challenges both of us have had to manage. I knew right then and there we were kindred spirits, and the rest is history. Now let’s talk about that hair. She absolutely loved colouring her hair. I would always ask how long it would take and she’d casually say 4 hours and I shockingly yell “What? 4 hours? Jeezus what do you do for 4 hours?” She says, “I play games on my phone but sometimes I sleep.” I laughed.

One of the first things she asked me to help her with was explaining her CF to her friends. So, she group chatted me into the convo and I simply told them that “She and I were born with a defective gene in our body. I told them that we all are born with these genes. Genes are responsible for all of our physical characteristics and how our body functions. When one of those genes is broken then the body will not work the way it should. Because she and I have this broken gene, our bodies make an abnormal amount of mucous. The mucous blocks the air ways in our lungs making it hard to breathe. We take medicine and we do exercise to try to cough out all this mucous, but it is impossible to get rid of it so as time goes on our lungs become damaged and we find it hard to breathe. Eventually we will both need to get new lungs or else we will die.” As I shared this, I think she understood her disease better.

We both have been told all of our lives that we must do some type of exercise to try to unstick that glue from our lungs and cough it out. I have been cross Fitting for several years and at the time I was the owner of a crossfit gym here in Calgary. I asked my general manager to take up some weights, exercise mats, dumbbells and medicine balls to her house to help get her get started on her new exercise journey with me. We started to do workouts together online. We would do this 3x a week for 6 months straight. At that time, she was doing really well physically due to the new drug called Trikafta. She was kicking my butt in our workouts. It was amazing watching her get stronger, more confident and show off her muscles. Then she got a boyfriend and dumped me. We talked all the time but stopped working out together. So, then I sent her workouts to do with her boyfriend and that was fun for them.

As time went on, she started to struggle more with her CF and landed herself in hospital for over 3 months during the pandemic. She had a difficult admission. But we would do a fun workout that she could do there and then we would talk about life. She wasn’t very good at explaining to me what was going on so when she was in hospital we would plan to facetime while the docs or nurses came in and she would hide her phone under the blankets, and I could listen to what they were saying to her. That way I could help explain to her what was going on. I think she felt so much better having someone who knows exactly what she was going through. Once we got caught and she just said “oh I thought we logged off” wink. Our stories are tragic but in sharing them we were bonded forever. Since there are only 70000 people worldwide that have CF, it made us 1 out of 857 million. I told her that she was more than one in a million and she always laughed at that. There are so many things I love about Jo. She was kind. She was funny. She rarely swore. She had only nice things to say about people. She loved her animals. Duffy and Storm, I know are going to grieve for her. She loved her horse Magic. I would watch her videos riding him and she just looked like a majestic queen trotting around the barn. When I watch those videos, I don’t see her CF. I see her being present and enjoying that exact moment in time. Much can be learned from her.

She loved the Stampeders and the band KISS equally I think, and she got to meet them both. She was so happy. She absolutely loved going to the games with her dad. She talked so lovingly about her dad. She really appreciated all the yummy meals he would make. It was beyond a father daughter relationship. Their relationship was sacred. She also loved her mom but admitted to me that she gives her mom a hard time. She wanted to be independent, but Nicole knew she couldn’t leave it up to Jo to take her meds properly or do her treatments on her own. So poor Nicole had to be the enforcer. The times she cherished with her mom was when they went to the barn. She couldn’t wait to get in the car to go. When she got too sick to go to the barn it broke her heart. Thankfully she had just gotten a new kitten- Storm and her love affair with animals continued. She loves candy. I actually made her a candy buffet for her hospital room. It had 6 jars full of all her favourite candy with refills to follow. She lived on crackers and butter. I am sure her parents will never look at crackers and butter the same. She loved colouring. She loved video games. She became my teen word translator. The slang of her age group is daunting. Its obvi I didn’t know the 411. She had to explain the “SHIP” to me. When she and her ex got together, she asked what her ship should be. I’m like what?? She says “you know, the combination of our names. Like Bennifer, Jenifer Lopez and Ben Affleck.” “Oh” I said as I silently shook my head and became grateful, I was no longer a teenager.

She loves hard. She expects nothing back. She told me about a special moment with her brother Jamie. It was during her lengthy 3 month stay last year. She said to me “you want to know something?” I said, “yes of course”, and she said, “my brother Jamie told me he loved me today” and I said, “that’s great”, and she said “no, you don’t get it- we don’t tell each other that stuff but today he said it.” And as I welled up with tears, I said “Well then that is just the best thing ever” I always made it a thing to tell her I loved her. Being Kindred spirits is one of the most beautiful relationships to be a part of.

She liked a certain quote that she would put on her social media several times, “Being happy never goes out of style”. That is absolutely one of the things she was good at. She did her absolute best to be happy no matter how bad of a day she was having. The disease she and I were born with is a monster. It puts us through some of the worst days of our lives, but it also gives us some of the best. I mean just by staying alive every day, while a demon is trying to bring us to our knees, is a huge accomplishment. That is the definition of a warrior. Josie did that for 7,399 days. Now what separates her from the pack and me frankly is she took it all in stride, all the procedures, all the drugs, all the treatments, all the nights spent in hospital, all the time away from school, all the missed vacations, she accepted it and then found some happy. She befriended the nurses, especially. I am assuming many of them are here today. Know that you made an impact on her. She told me all the time how amazing her nurses were. I am inspired by her. Her kindness was more than a characteristic, it was in her DNA. She finally got her tattoos. We talked about what the first one would be at length. She wanted a set of lungs with something on them. She chose roses to be the airways. Very fitting for her as she took something that has caused her the most pain and covered them with something beautiful. A couple weeks ago, she got her second tattoo and I loved it. It was a kitten/dragon combination in all her favourite colours, pink, purple, blue and orange. It looks very mischievous. Again, very fitting for a kid who loves to poke a bear.

I am truly broken hearted. Her story was one of triumph. I cannot wait to see her again. We can have a push up competition.
Lastly, she posted the quote “Not all angels have wings, sometimes they have whiskers” Well as much as I agree with her, I needed to change it up a bit.

In my version “Not all angels have wings, sometimes they have blue and pink hair

Let her love of life carry you through this time of sadness.
She loved life and it loved her right back.

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