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The most unbelievably true story that ever happened to me.

Personal Journey · April 23, 2018

This truly is the most unbelievable story that has ever happened to me and I’d like to share it with you.

The backstory was copied from my Facebook page post dated 12/11/15. You may also notice that I had written an abbreviated version of it in my 2016 Xtreme Hike CF fundraising letter.

(The Facebook post copied from 12/11/15)

"The reason Marc and I chose to hike the Grand Canyon was because The Xtreme Hike is a  metaphor for how we've personally dealt with being CF parents.

You start along in life (North Rim at Grand Canyon) just walking along thinking all is  going according to plan when you get hit that both your children are diagnosed with    cystic fibrosis.

You begin the long and slow descent into the Canyon.

You now take cautious steps but are filled with determination while living the reality  of what CF is.  (North Kaibab Trail 8,241 ft elevation – 14.3 miles straight down).

You then hit hell (Phantom Ranch-bottom of the Canyon). 

The hell that Marc and I buried our beautiful 13-year-old daughter Jena to this horrific disease.

You're broken.
You're exhausted.

You don't see a reason to keep going, but then you do. (My son and the 30,000 others    still battling cystic fibrosis)

Shaken and unsure of what's ahead, you cross the bridge over troubled waters, the small and narrow suspension bridge over Colorado River, just to step foot at the beginning    of The Bright Angel Trail (my Jena) leading you out. It's mostly an ascent of 9.6 miles – 6,850 ft elevation. And the hardest climb out of hell you'll ever accomplish.

You climb with all you've got, up that perfectly named trail of Bright Angel, to the    other side: South Rim

Out to where the light is.
Out to where Kalydeco, Orkambi, and all the drugs on the horizon that will be the daily cure for those with CF.

Out of the most Xtreme Adventure that changed your life forever.

All done in ONE DAY."

So that was my written story asking people to donate to my Xtreme Hike for The Cystic Fibrosis Foundation

This is what happened in the Grand Canyon on May 21, 2016, during my Xtreme Hike:

My entire ‪#‎InThisTogether Team (Angie, Marshall, Peter, Carole, Paul, Marc, and me) had hit Phantom Ranch, beyond exhausted. Some of us were in real pain from the straight, ridiculously hard decent into the bottom of the Grand Canyon. We knew “Pain was not a valid reason for stopping” so we bandaged ourselves up and looked straight up at the blue sky wondering how on earth we were going to make it out.

We gathered for a group hug and some motivational words that we wouldn’t stop…not until we were done with both this Xtreme hike and finding the cure to cystic fibrosis.

I had just crossed the Colorado River on the narrow suspension bridge and turned to wait for my team. It was there that I saw the wooden sign ‘Bright Angel Trail.’ I had just stepped foot on the beginning of The Bright Angel Trail, our way out.  Once there, I stepped aside (the trails are very narrow) to wait for my team to cross and to let this young hiker pass. Unfortunately, she had to wait as my team was in route crossing the Colorado River. I was smiling and reaching for my camera to capture my  #InThisTogether Team with this motivating sign. While the young hiker and I waited for my team to cross I noticed she had a “13” on her shorts but the number was quite worn and I thought perhaps it could have also been an 18 that had faded.

Desperately wanting it to be a sign from my daughter Jena, I asked, “Is that a 13 or 18?”

She said, “13.”

At this point, most of my team had crossed the bridge as I was saying to the young girl how much I loved the number 13.

For some unknown reason I had the need to ask, “Do you mind, but what is your first name?”

She smiled and answered, “Jenna.”

I, along with now my whole team, let out a loud gasp.

I needed to explain to this beautiful girl why we all reacted that way to her name and explained about cystic fibrosis, the hike, and showed her my laminated memorial picture of Jena that was attached to my backpack. The memorial picture stated Jena’s full name and both her birthday and her ‘moved up’ date.

After looking at the picture of my daughter, Jenna said to me, “I was born in 1993 as well.”

With that I collapsed to the ground sobbing. Marc went on to explain the whole metaphor of this hike to her; the letter, the analogy, my daughter.

Jena/Jenna had met me in person on my very FIRST step onto The Bright Angel Trail…on our way out of the hardest thing all of us could ever do.

She was there to remind us to keep going, despite pain and exhaustion, to get to where life is beautiful and to where the cure to CF is.

She was there to prove to me that there are NO such things as coincidences. My daughter left no room for doubt.

Marc’s bib number was 51, mine was 52…added together we made 103 (13).

Our baby girl found a way to make it undeniably clear that she has never left me and that love never ends but transcends.

We all made it out of the canyon with smiles, tears, and confidence that CF will stand for Cure Found.

Thank you Jenna for being a tangible sign from above.

And thank you Jena for always making your presence known to me in the most miraculous ways!

On June 2, 2018 we head back into the Grand Canyon and embark on yet another Xtreme Hike Adventure. This time, however, we are starting on The Bright Angel Trail, certain Jena will somehow meet us there and lead the way.

Take a look!

https://margaretecassalina.com/wp-content/uploads/2018/04/Xtreme-Hike-2018.mp4

 

If you’d like to be a part of the Jena Adventure and support the Cystic Fibrosis Foundation’s mission of curing ALL THOSE living with this disease, please click on the link for a donation:  Xtreme Hike for The Cystic Fibrosis Foundation

 

(FYI: Why 13 is so important. Jena’s birthday is 3/13/93 and she ‘moved up’ to heaven when she was 13. To me, every time see a 3 or 313 I take it as a ‘sign’ from my daughter. #LoveFromAbove

Filed Under: Personal Journey Tagged With: 2018, Beyond Breathing, CF, CFF, cystic fibrosis, Cystic Fibrosis Foundation, Cystic fibrosis speaker, Jena, margarete cassalina

Previous Post: « Meeting Jena; three years in the making
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Margarete Cassalina is a motivational speaker, award-winning author, and national advocate for the Cystic Fibrosis Foundation. Read More…

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