Jena looked at me and simply said,
“I don’t worry about tomorrow today. I am not going to ruin today because tomorrow I might be sad.
If I am sad tomorrow, I’ll be sad then, but I won’t take away the fun of today.”
~ excerpt from ….
I had the privilege of meeting an extraordinary woman, Margarete Cassalina, this past weekend at the American Airlines Celebrity Ski Event in stunning Vail, Colorado. We were all there in the spirit of raising money and awareness for the Cystic Fibrosis Foundation. Our job was easy…my husband, John, along with the All-Star Band was able to entertain on the first night and set the tone for a great weekend of fun, skiing & giving. Margarete, however, had to stand & speak to the diverse crowd of donators, sponsors, celebrities and American Airlines executives & volunteers before the live auction on Saturday night. And, that she did. With the burning love of a mother on a mission, she delivered her message. Except for the clanking of dishes being collected in the background, she had our undivided attention.
Her story is heart wrenching.
Both of her children were born with cystic fibrosis.
Her son, Eric, has a moderate expression of cystic fibrosis, as the doctors classify it, and her daughter, Jena’s expression was more severe.
Eric is 21 and doing everything that every other 21 year old is doing now…college life, girlfriend, parties, etc., but his existence includes chest physical therapy treatments for thirty minutes twice a day & medications that get more effective every year with this funding of scientific research to the Cystic Fibroses Foundation.
Jena, however, lost her battle when she was 13 and in Middle School when her lungs got tired and the new lungs for her transplant didn’t show up in time.
So wrong & yet so true…
However, as Margarete spoke so eloquently and with determination depicting her journey with this dreaded disease, what rose up from the pain and suffering was what touched each and every one of us in that room.
“How does this woman even get up in the morning and breathe??? never mind, talk!” was what ran through my mind.
Her sheer determination and LOVE ~ a Mother’s Love ~ is what keeps her moving onward in her tireless journey of raising awareness & funding to find a cure.
This was the 28th annual event for this organization and my husband has been honored to be a part of it for the past decade.
It feels like a family because it is a lot of the same people who support it year after year.
When I had the opportunity to finally give her a hug, the unshakeable feeling of agape love came over me and I knew at that moment that we are all sewn together like this magnificent tapestry of love & pain & joy & grief… and HOPE.
The amazing grace & strength of character that this mother showed us so courageously and ferociously comes directly from this source… pure, precious love that we all share, and when we are in the presence of it, it changes us forever.
She took this book out of her purse & gave it to me & it was no coincidence that the title of it is “Beyond Breathing“…
Margarete’s is a message of this love.
Resilience at its finest.
Thank you, Jena.
If and when you decide the read this book, make sure you have the tissues handy!