Man never made any material as resilient as the human spirit.
What is happening around the world seems to match what is happening in our own lives. At times you feel hopeless, the darkness and sadness seems to swallow you whole, and you mourn the loss. This post is not about the mourning or the tears, but about finding the joy in spite of all those things. It also serves as a reminder of all the good that is still in this world, even though it might not seem that way right now. I know this is only one families story, but I hope it renews your hope in humanity, even if just a little bit.
I am still riding a high just like the roller coaster we rode when we visited the Big E Friday night, an annual tradition in our family. Lea walked almost the whole 4 hours we were there, riding her first roller coaster along with our favorite, the “big yellow slide”. These days it stings a little less when she says things about “next year”. Rather than run off and sob I engage in the conversation, still able to carry on. We eat and play and ride and festival and at the end of the night Lea asks to play a game. Every fiber of my being is against these games. They take your five or ten or twenty dollars, and hand you a stuffed toy covered in germs and who knows what else. Despite all those things, we say yes. Lea plays a water shooting game and doesn’t win, which means no prize for her, and she is ok with that. As we walk away the man running the booth calls her “little lady” and tells her what a great job she did as he hands her a stuffed duck. I start to cry and so does Mike, and we thank the man over and over. That man is a reminder of the kindness and good that is in this world, and we need to speak of it. A germ covered bright yellow duck meant so much to us on that cool night and I am so thankful for this reminder of the good.
On Saturday hundreds of athletes at Tuff Girl finished up the “Tuff Triad,” a fundraiser for Lea. So many asked how they could help our family, and we loved offering this challenge as a way to help them get fitter and stronger while focusing on their health and raising money for Lea. Over the month of September athletes committed to doing a minimum of 1000 swings or jam ball slams, 500 squats and 250 pushups. We celebrated the finale on Saturday in special class class “Triumph” and I felt moved to address the 7:30 crew, many of them having been with me for 8 or more years. I told them how proud I was of them. I told them how strong and amazing they are. I told them how much this challenge meant to me and my family. And then, I was unable to say anything else. I didn’t need to… I touched my heart, as they have touched mine, and we held our hands in the air and clapped. This tribe, as we call ourselves, is a reminder of all the generosity, the good and the kindness that is in the world.
The whirlwind weekend continues and the very next day we arrive at Cold Spring School for a fundraiser put on by the amazing Angie and Alicia from Rascals Gym. I arrive at 10:30am, just 30 minutes after the start to a packed gym. I could feel people’s eyes on me as I entered, hand in hand with Lea, and was instantly overwhelmed with a flood of emotions. Looking around I take in the room of beautiful and kind people, some I know well, some I have never met. I can feel their love and support as I feel all the feelings… sad, angry, and mad that we even have to do this fundraiser, while at the very same moment feeling so much gratitude and so much love for these people. Hundreds and hundreds of people file into the bright community building over the next four hours. Friends and family travel from different states, and I am again reminded of the kindness and generosity of people.
We leave for one of our favorite places, Naples, Florida one week from today. I am both scared and excited, unsure of what it will be like… something I am very used to these days. The break from daily hospital visits is a welcome one and Lea is so excited.
Tomorrow is Lea’s last day of radiation. I know most are excited on this day, but not me. I will celebrate for her, but inside I am angry that this is only a temporary fix for a fatal disease. The higher does of steroids has been good for her. It quickly improved her balance, strength and coordination and her headaches have subsided. Today we sat in brightly colored children’s chairs in the pediatric oncology department and I actually felt a glimmer of hope when we spoke to her doctor about one of the clinical trials she is eligible for.
This week I am more hopeful and have had an easier time enjoying the now… not letting my mind wander to what is yet to come. I don’t know the future or what tomorrow will bring, so I will find as much joy as I can in today, allowing myself to ride the high as long as possible. Tonight I am smiling as Lea walked on her own for the first time in months. Tonight I will find joy in that as I reflect on the kindness of so many and the resilience of the human spirit.
To see more pictures of our busy weekend and how we are finding joy, follow me on Instagram.
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