This past weekend marked our first big fundraising effort for the CFF. And it was hard. My husband, Nathan, completed the 30.1 mile Xtreme Hike along a portion of the Appalachian Trail, which for months, he has prepared for, trained for, and raised funds for. Because of a nagging knee injury, he felt pain the entire time but he fought it, he kept going, and he crossed the finish line. (You can read more details about this experience here.) After the celebratory breakfast the following day, Nathan and I walked out to greet my parents and our children. (The girls were not able to attend since they have Cystic Fibrosis and no 2 people with CF are supposed to be within 10 feet of one another or allowed to attend the same CF function due to the risk of transmitting resistant bacteria.) Soon after we exchanged hugs and Nathan received accolades for this accomplishment, my 5 year old, Kelsie, tugged at my leg and said “Mommy, I need to tell you something”, and then she asked me to bend down so she could whisper in my ear, “Does this mean CF is gone away now?” Already feeling emotional after months of this exhaustive fundraising effort, I couldn’t control myself and tears poured out, as I hugged her and answered, “No baby, it isn’t gone yet.”
She knew her daddy was hiking to help cure CF. And when she saw that he had made it, her sweet innocent mind pondered if that was really all it took. If it were that easy, her dad and I would hike that hike countless times over again if it meant we could free her of that disease. But unfortunately it’s not that simple.
It was a hard reality. Our emotions were at every extreme. While we were feeling great pride and jubilation for Nathan and his father for completing this arduous venture, we also walked out that day with heavy and overburdened hearts. Sitting around celebrating with a 100+ people whose combined efforts raised over $400,000 for Cystic Fibrosis was exciting and rewarding. But the elephant in the room reminded us that we are all connected because of this disease that absolutely SUCKS and takes the living breath away from far too many. Our family had just spent about 5 months preparing, planning, investing our money, our time, emotional and physical energy to get ready for this event. We had to pull from the most broken parts of our hearts and share our story countless times to so many people we don’t even know in an effort to raise as much money as we could for this fundraiser. But at the end of it, even this most exhaustive effort couldn’t take it away. Our girls still walked away from there with CF. My initial thought was, I don’t think we can do this again for a while. This was so hard in every way – logistically, physically, mentally, emotionally, financially. It took a lot out of us. But then I remembered why we decided to do fundraisers like this to begin with.
After our 2nd daughter was born, and 2nd to be diagnosed with CF, my husband and I felt quite a bit of angst as you can imagine. Our desperation for a cure mounted to a whole new level. Now BOTH of our children had Cystic Fibrosis. We now had to think ahead to fighting this battle with – and for – both of them, for the entirety of their lives.
As a parent, there isn’t much you can do when handed something like this. You can’t magically take it away. Even if you dedicate your entire life to taking the best care of them possible and you love them beyond measure, this disease is still in every cell in their body and there is absolutely NOTHING you can do to change it.
The encouraging stories from doctors provide hope, however. You start to hear things like, “this isn’t the disease it used to be”…”there are so many new drugs coming down the pipeline”…”your children can expect to live a normal childhood”…”the life expectancy has doubled in the past 30 years”…and then you learn that the majority of that has been made possible because of one organization. You start to hear A LOT about the Cystic Fibrosis Foundation. And when you do your own reading, you realize that the CFF really is 100% committed to finding a cure for this thing! Through their persistent efforts they have been able to continue life-saving research and are discovering cutting-edge therapies that are not only improving the quality of life of those affected but also extending the quantity of their years.
So, when you see that there is this organization out there spending 100% of it’s time trying to change the face of this disease and make your children’s lives better, you decide that maybe there is more you can do to help them. Even though you aren’t a scientist or a researcher, and you are just a parent deep in the throes of this caring for this disease every day, maybe you can still team up and rally support for them. This is the organization whose entire mission is to help people with CF, including our precious children, live better, happier, healthier and longer lives. So should we? could we? would we do our part to help this foundation? Um, 100%, absolutely, no questions asked! And are we going to ask our family and friends and everyone connected to us in some way to help us do the same? Yes. Not because we enjoy this. But because, besides taking care of our girls today, it is one of the only things we can do to help give them more tomorrows.
Because of my faith in God, the other thing I believe we can do is pray. But just like you can’t make a living and be financially secure without working for it (in most cases), I don’t believe a cure is going to come about through prayers alone.
So that is why we fund raise. That is why my husband hikes 30 miles up a mountain in one day. This is why we invest our time, money, physical, mental, and emotional energy to increase awareness for this disease. We do it because we love our children more than anything and we can’t bear the thought of seeing them suffer the outcomes this disease currently promises for them one day.
So even though I don’t like asking people for money, I love my children more, so I will step out of my comfort zone and ask people – even strangers – to give financially to support the organization that is providing life-extending therapies for my children and on mission to find a cure for this disease that threatens their future.
I also don’t like exposing my family and our struggles, but I love my children more, so I sacrifice our privacy and share our stories in hopes that increasing people’s awareness of what this disease means to my children and our family will not only increase their knowledge of CF, but also motivate them to support the Cystic Fibrosis Foundation anytime they are given the opportunity.
My husband, his father, and about 60 other men and women crossed that finish line last Saturday, all with one ultimate goal in mind, to help find a cure Cystic Fibrosis. They were able to end their fight to hike those 30 miles across a mountain and they were able to go home that day. But unfortunately, our fight to cure CF is not over yet. We must keep moving forward working to keep their little bodies as healthy as possible, for as long as possible. And even though the fundraising is hard, is taxing of our time and energy, and overwhelms us physically and emotionally, we will do it again. And that means we will periodically ask all of you to help us again. And again. And again. And we will not stop until a cure is found. But one day, and oh how I look forward to this day, I believe deep in my heart that all of this will pay off, and I will be able to look in my daughters’ eyes and say, “Yes, this time, Cystic Fibrosis really is gone away!”