The CF Foundation did Frankie Valli proud a week ago… “Oh, what a night…late September back in ’63…” well, close. It was late September 2010, and it truly was very special to me.
My daughter Sharlie, who spoke at the event, has documented the Gala on her blog. I’ve often mentioned the feeling of family that permeates USANA. Family was out in full force for this fundraiser – my immediate family as well as my USANA family. A very special thank you to Dr. Wentz and Prudence, Denis Waitley, Bud and Bunny Barth, Majid and Kahnoush Mokhbery, Laura Brownwood and Kelli Lessie for being in attendance and supporting this cause that means so much to me. Also, thank you to the USANA distributors who acknowledged my efforts in the annual CF Yearbook: Steve Netherby, Sylvia Adler, Marian O’Neal, Michelle Manner, Rosemary Serafin, Ed Cimler and Alicia Bedoya. Read all about the spectacular evening on Sharlie’s blog, or you can read her entire post (including her inspirational speech) below.
The annual C.F. Breath of Life Gala this year was definitely a night to remember. With my mom being honored and presented with the Breath of Life award by Robert Beall and my speech, it was a very eventful night. Having so much of our family and friends there made it even more special!
the owner of Green Cruiser was there that night and already planned to surprise me with a bike!!
(my mom said she attracted it and I TOTALLY believe her!) It was an AMAZING surprise!
Nine years ago I spoke at this very event, the Breath of Life Gala. I was a nervous 22-year-old; partly because my boyfriend and his parents were in the audience. When I finished speaking, my boyfriend started walking towards the podium. I thought he was coming to escort me back to my seat so I was confused when he came up on the stage and took the microphone…until he dropped to one knee and pulled out a gorgeous ring. It was an emotional, magical moment. Of course, I said YES!
When Ryan and I first started talking about marriage, I remember having mixed emotions and frankly, being frightened. I asked Ryan if he was really okay marrying someone with Cystic Fibrosis. I loved him so much and would understand if he wanted to be with a woman who didn’t have my physical limitations and who would be able to have children. I will never forget Ryan’s words to me that night. He told me that he couldn’t help who he fell in love with and CF was a part of who I was. He told me he loved all of me.
Ryan was right, CF is a huge part of who I am. Because of the way I was raised, I learned I can choose how to view my disease. My mom has the most amazing way of finding blessings in every situation. She instilled this in me and so although CF remains my toughest challenge, the lessons and blessings that come from living with a life-threatening disease have not been lost on me. I recently read a quote that struck me so powerfully, especially because I’ve been battling another serious lung infection.
“While you can’t shut out illness entirely, you can make your body a place where health thrives.”
I’ve learned there are many people without symptoms or illness that don’t experience and enjoy true health. Until there is a cure for CF, I can’t shut out illness entirely but every day I can strive to make my body and soul a place where health thrives.
The irony is that living with CF has actually taught me the lessons that have been so valuable in facilitating healing. Without the perspective CF has given me, I’m not sure I would be so uniquely conscious and grateful for every breath of air I take into my lungs. That awareness is a blessing!
I’m not sure I would love with the same intensity and capacity. I held my little sister Lexi in my arms as she passed from this life to the next after her struggle with CF and transplant and you can be sure I do not take a single one of my precious relationships for granted. What a blessing!
I don’t know that I would celebrate life as I do now. I’m never going to be one of those people who dread birthdays and fib about my age. When I was diagnosed at 14 months the doctor told my mom encouragingly that I may even live to the age of ten. I celebrate every birthday and want to shout from the rooftops…I am 31! Another blessing!
I’m not certain I would have recognized all the miracles in my life. Albert Einstein said: “There are two ways to live: you can live as if nothing is a miracle or you can live as if everything is a miracle.” When I look at my 3 ½ year old son, I can think of all the medical reasons why I should not have been able to carry, deliver and take care of a baby and now an energetic toddler. I am so grateful for the indisputable miracle of not only being alive but of being a wife and a mother. This has been the greatest blessing!
I might not have the relationship I do with my mom. She is my hero and I love her so deeply. Ten years ago my mom qualified for a trip to Hawaii. I wasn’t feeling 100% and she was hesitant to go, but I insisted. I didn’t want to ruin the trip she had been so looking forward to. However, after she left, my health spiraled downhill quickly and I was admitted into the hospital. I knew my mom was in the air but I left a message on her cell phone so she’d know what was going on. That night I went to sleep wishing she could be with me. When I woke up the next morning she was sitting on my hospital bed. I gasped… I could not believe it, I couldn’t even understand how it was possible! I just stared at her with this amazed, confused look on my face. She leaned over, kissed me on the forehead and while putting a beautiful lei around my neck, whispered, “I’m sorry I wasn’t here for you yesterday…I had to fly to Hawaii to get you this lei.”
She arrived in Hawaii, listened to her messages – and when she heard mine, went right back to the airport, flew through the night and took a cab to the hospital. This is the kind of mother she is. I have never ever felt alone…she has been beside me during every trial and every triumph.
She is being honored tonight and although I know she is uncomfortable receiving an award for something she says any mother would do, she is so deserving and I am so proud to be her daughter and so grateful to be the recipient of her love and devotion. My relationship with her is another of my greatest blessings.
As I look around this room I want you to know that each of you bless my life. You are helping me along this journey in ways you might not even realize.
After Lexi received her double-lung transplant she went into rejection and was put in a medially induced coma that left her legs paralyzed. After about three months she was weaned off life support and able to come home but the paralysis remained. The young men and women in our church were going to go on a bike ride up to San Onofre and Lexi was heart-broken that she couldn’t participate. The plan was for Lexi to ride along with some of the leaders in a car. When we got to the meeting point, a dear friend of ours who happened to be a very good cyclist told Lexi he had a surprise for her and pulled a tandem bike out of his van. He said, “Lex, we’re going to do this together!” Lexi was nervous that she would slow him down and be too much of a burden for him but he just helped secure her feet to the pedals and then told her to peddle her hardest and he’d make up the difference. That bike trip meant the world to Lexi and I’ve never forgotten the kindness of that wonderful man.
You’ve done the same for me. Despite all the blessings, the burden of living with Cystic fibrosis can sometimes seem too much to bear. I feel all of you behind me pedaling, pushing, cheering me on. The emotional, physical and financial support you so unselfishly provide give me countless reasons to keep pedaling with all my strength.
I am not cured yet. I desperately want that and pray daily for that miracle for me, for my 9-year-old nephew Ben, for my 6-year-old niece, Lauren and for all who are fighting for every breath. But there is a reason I can stand in front of you tonight with 18% lung function and feel vibrant. I am healed by love, faith and hope. That is what tonight embodies. My cells are abuzz at a soaring frequency with the energy of generosity, determination and pure love in this room.
Because of you, I not only see a cure…I can feel it. Thank you for being here tonight and God bless.