Have A Little Faith in We

Happy Sunday everyone! I am a little sad that I am just now finding myself back here, almost a week later, but silver lining for a week taking an unexpected turn? It included Danny coming home on Friday!! That’s right – our positive outlook, plans to be ready for a long term stay, flexibility all paid off and he was released to finish his IVs at home. We are feeling extra lucky and blessed this weekend. More updates regarding Dan’s health later this week.

This weekend Bishop O’Connell High School hosted the 41st Annual SUPERDANCE: a 12-hour dance-athon to raise money for the Cystic Fibrosis Foundation. Over these four decades the students of our special school have raised over $4 Million dollars to find a cure for CF. This tradition is one that is so incredibly special to anyone who walked the halls of this school and the many families whose lives have been touched by its efforts. Danny and I have the unique opportunity to be both.

As part of the SUPERDANCE preparations – a month prior to the dance an assembly is held. During this 1/2 day program the students who serve on the various committees that put this big event together roll out the year’s theme, explain how to get involved and most importantly: share the many inspiring reasons to get involved. Each year since 2002 Danny has spoken at the assembly (just in case you are really good at math, this in fact means he did not speak every year he was a student – a story for another time) and I join whenever I can tag along. There are many things people can say about teenagers – and as we all know each generation is even more rude, inappropriate, and selfish than the one that came before. A tradition of sorts that gets passed down each and every decade – and if we are all being honest, there is a little truth. But if you want to find the absolute best these students have to offer, if you want a moment in time that is left to pure innocence, beauty, and the childlike wonder – I invite you to take a seat in the gym of that school on this assembly day.

All grades, all clicks, all genders, all students come together to cheer and sing and play and unite together to fight for a cure. The assebmly has a wide variety of speakers and acts to delight. Some of the tride and true are the many patients who have been coming to speak since before they could even talk or the photos of the many teachers who where once O’Connell students (and this was always really funny and entertaining since the pictures looked “sooooo old” – until this year…. the kids laughed at photos from teachers who graduated SEVERAL years after Danny and I….ouch). There are the games different committees concoct that have representatives from each grade compete to win (spoiler alert: it is always the seniors who win), or the student videos and photo collages of years past and things to come that flash across the screen. But one of the things that always causes me to pause and my pride of being a Knight to beam – there are always a few student acts. Some singing, some dancing – some are jokes and some are true talents. Some are popular kids and some are kids you may have never even known went there – but all the students welcome them wildly with cheers of encouragement and congrats for a job well done. It reminds me that O’Connell is home to all types – a rarity in the world of high schools.

In my family alone – 5 of us put on that uniform and took up our own place in the school. Each person’s experience was completely diffferent. I, of course, LOVED every minute and relive those days often. One of my brother’s I am not sure has ever been back since graduation…. but regardless ALL of my siblings participated in committees or volunteered – often with their own talents (coordinated bands, leadership)- in the SUPERDANCE. The Heppes family is a little microcosm of what this dance stands for- uniting for a cure.

This year my sister Bridget was the chair of the committee who organized the assembly and I have to hand it to her, it may be one of the best I have ever attended (even including 2002 and 2003 – some of the best years, our years). The speakers moved me in a way I have never experienced.

First up a few teachers and administration that were there for the first SUPERDANCE. Some as students, some as administration – but all of them with the same fervor. A cure had to be found…. hope had to be given to these kids, to their families, to their friends and this school was going to find a way. A cure has not been found yet, but they all shared the wonder, the amazement and the pride that does exist with the fact that as the amount of money raised for Cystic Fibrosis research increased – so did the life expectancy for CF patients.

Following these SUPERDANCERs from years past was Megan Jorn – a daughter of the O’Donnell family, the family who started it all. Over the years Mrs. Jorn has stopped in to share her story, to relive her memories, and to thank the students for the dedication. Although the money raised, the research funded, and the hope promised to future generations of CF families could not save her siblings – she does represent one dream of her sister Maura’s to fight CF as an O’Connell family that these kids are making a reality. This year her story was a little different. She spoke of watching the first dance unfold, she reminisced about the unique personalities of each of her special siblings, and she encouraged everyone to get involved – but then she spoke of what it is like to be a family with CF. Each year we come to this same auditorium, we dedicate ourselves to the fight and we remember the many reasons and people that  call us to return once again and search for an end to CF…. then we dance. But when this season ends and life returns to normal – we all go back to our lives and for some that is a life lived with Cystic Fibrosis.

Mrs. Jorn went on to explain what that normal life with CF looked like in her childhood home. Pills as a large side dish for every meal, the hum of treatment machines that sing along with your morning alarm clock. Your home filling with the very distinct scent of inhalant meds and the sounds of a patient fighting the urge to give into coughing fit as air struggles to escape. The middle of the nigh ER trips or the many days a house was left empty as the family played out their life in the halls of a hospital.  And as overwhelming and scary as this all sounds, it is the everyday life of a family facing CF.

As she spoke it was as if these words settled into the deepest parts of my heart – and I couldn’t decide whether to nod in agreement or release the tears in response to her honesty. And just like that a light bulb went off in my head – the life we live is so very unique, yet the acceptance of it without question is something of a miracle. Yes, the nights in the hospital that suck are painful and the dark fears of what-ifs are something that can paralyze you. There are days fighting has felt like an uphill battle and we have released the weakest version of ourselves. Pity parties, depression, anger, resentment – the whole cast of characters have come to live in my home. But there are also days this is just our life. Our pup was afraid of the breathing machine when he first became a Bessette, and now he knows it is the prime opportunity to get extra snuggles with Dad. The ER was a place of nightmares for me and now I liken myself to an expert in how to combat the hours of waiting. As human beings we are resilient, we are strong, and with our passions and zeals we learn to adapt. But amongst the adapting…… somewhere in-between all the coping – there is a beautiful life that is some how carved out of living with CF. Patients and family members alike put on their armor daily, even when they don’t know it, and there is a pride there that is only known by being in the trenches.

That day….. in that auditorium…. I yet again learned an incredible lesson from this school: I have been called to a life that is misunderstood, unfathomable, and rejected by others- and somehow I have been granted immense grace by choosing it. It has molded me and gifted me the greatest opportunity: to have to learn to be an unselfish, dedicated,  unrelenting, and an unconditionally loving partner. And Danny – he has chosen to take a partner in his own fight. Instead of facing this disease with only his own fears, his own wants, his own hopes….. he has chosen to love and be loved, and therefore adopt another person’s journey on this path. I would give my everything to heal my husband, but since that option is not at my disposal, somehow…. in someway….  this day I was gifted with incredible amounts of gratitude for our life, all of it.

After that speech – and my pile of emotions that now occupied the empty seat next to me….. we were greeted by several patients and parents. They all shared their struggles, their fears, and their frustrations. It is an incredible bearing of the soul in-front of complete strangers, that somehow become like a family. Mitch – who has been attending since he was baby – shared the raw truth that he would not be here without the advancement of the drugs and that is thanks to O’Connell. Another family of 6 with 4 CF patients, shared the incredible future they see for their brood – that really has nothing to do with limits. A new mom shared a slide show of her 12 month old who is just joining the ranks of CF fighters. This is a special group of people – that have been adopted to the O’Connell family and we are so honored to have them with us, on this day ….. and every one after during this war for a cure.

When it was Danny’s turn, Bridget was able to give the introduction. She spoke of meeting him at 5 and the lessons he has taught her through her childhood to now. How she came to understand what Danny’s “tune-ups” really meant. And now that she understands what he is really facing, how proud she is that he is her brother. Danny very eloquently returned the intro with the start of his speech. What an incredible girl Bridget is: opting to raise money for CF since she was a little kiddo instead of birthday presents over several birthdays, taking all that life has to offer and running with it – and how proud of her he is, as his sister. Just in case you all are wondering – at this point the lump in my throat feels as if it is permanently lodged and my heart sends another shock of resounding gratitude throughout my whole body for a moment like this, brought by the bizarre blend of CF and O’Connell.

Danny’s speech was excellent. He told the stories of how much he hated O’Connell at the beginning, when it turned out to be the best family he could have ever asked for. Encouraging everyone to take advantage of the moments in life that is presented to you right now. He wishes he had done a better job of that….. but that wishing such as this only drives him harder now, as an adult who realizes how fleeting life is. In this season of life, Danny has said many times over that he struggled to do such and such thing at a lung % that was 40….. and yet here he is still facing the same challenges, at only 25% lung function. So he is done worrying about the struggle and just focusing on the part that he gets to do. I can’t tell you what an inspiration and life changing point of view that has given to us both. Another silent prayer of gratitude for our life.

As you go through life – like it or not – cliche or not – human nature I guess, you spend time weighing what matters and what doesn’t. You try and figure out what defines “the best” and “the worst” – often without even knowing it. Life is created by your values and what you ultimately deem important. For me it was always the big ones: faith, love, family….. not even because they were the right answers, but those presented the moments that I found the most happiness. Then my very personal journey with CF started. Not just as a volunteer supporter or someone that knew someone with CF- but a life that is very heavily intertwined with Cystic Fibrosis – that I learned one of the most important parts of life: Hope. There is nothing more powerful, moving, touching, and life altering than to see a parent of a CF patient staring at Danny as an adult – with sheer awe. And today – on this very special day that happens each year at this wonderful place. EACH speaker thanks the students for the chance to hope. It has taken me until YEARS of being away from my time as a student there to learn what they were really saying… but I pray the students will come to understand the gift they are giving of raw hope to those with Cystic Fibrosis, one of the greatest gifts there is.

This assembly…. this dance….. this year was expected to be like any other. Maybe a little more emotional as the last Heppes would dance their 12 hours as a student – but for the most part “good ole SUPERDANCE”. But instead this year I was given a gift. A moment in time to pause and reflect on the life I am living – and spending so much of each day just trying to move through successfully, faithfully, and happily. Doing just that takes every bit of energy you have some days – but this year SUPERDANCE gave me a reason to pause and know the rare gifts I have been granted in this unique life. CF is not something I would wish for anyone and the perspective I have is very different than someone living with CF themselves…. but since it is the cards my hand is currently holding….. it was an immense blessing to find though this experience a sense of peace, a feeling of belonging, and the knowledge that I am exactly where I am supposed to be. A moment that could only find me thanks to the experiences of SUPERDANCE 2016.

Thank you once again to the students for another year, another dance, and to Bishop O’Connell High School – as Maura O’Donnell would say: for making all of us “fighters and winners”….. and an army of hope for those with CF.  If you are interested in donating please do so here: http://www.bishopoconnell.org/page.cfm?p=679

Thank you of reading and remember to make it a great day!

Jackie