I also wonder how my relationship with Children's will evolve without Jacob physically being part of my life anymore. He was always the fuel for me getting involved. I sincerely hope he will continue to be my force, since I have a hard time imaging life without Children's. It's not about the balloon boy, it's about the people who came into our lives because of Jacob.
The past week has been all about Children's, and it has warmed my heart so very much. This past weekend, it was time for Courage Classic. 125 miles through Rocky Mountain. First of all, a big thank you to all of you who supported my ride. I am truly in awe of all donations. We will once again be able to support the Mitochondrial Clinic and Research at Children's Colorado. This in itself is simply fantastic news. This disease needs some serious attention.
I wasn't prepared this year. Bike training was not in the cards after Jacob died. Close to three weeks at sea level didn't help either. But you know what, I couldn't care less. I knew Jacob would get me up every single mountain pass, and so he did. How do you best describe riding the Copper Triangle, three mountain passes and a total of 83 miles? It is a beautiful ride, sometimes the views simply take your breath away. I saw my boy in the beauty surrounding me. I also got short of breath on the first pass, which also reminded me of how hard Jacob worked to breathe and do the things we all take for granted. He literally rode the Copper Triangle every day of his life to simply live, to get through the day. Not once did I hear him complain. That got me up every single hill this weekend.
It was also a time to remember Jacob. This year, we had a Jacob jersey. I loved people asking and commenting about Jacob, and recognizing his picture on my back. Children's PICU has their own biking team. I got many sweaty hugs from doctors and nurses from the PICU team. I very much enjoyed the hug in the porta potty line at the top of Fremont Pass from our favorite nurse practitioner, and riding with one of our favorite nurses from Keystone to Swan Mountain talking about our boy. And then there is Summits for Samantha, 70+ riders strong. I was surrounded by friends and good people all weekend long cheering me on.
I was very happy to have both Joakim and Sarah with me this weekend, which is a first. Joakim always stayed back with Jacob. Sarah had an absolute blast the whole weekend. She had planned this weekend with two of her best friends for months. They got the movie theater all to themselves. They got to help around the house, and also volunteered at aid stations both days. It was definitely the highlight of the summer for her. Joakim got to shuffle the girls around, got to enjoy some down time while we were biking, and the festivities of the weekend. I think the weekend convinced Joakim he will ride himself next year. Even Sarah said she wants to ride next year! That made me very happy.
On Sunday afternoon, Summits for Samantha crossed the finish line together. It's an emotional feeling to cross the finish line every year. You feel a sense of accomplishment. You also feel very little because it's really not about you, it's about the children who can't ride. This year's finish line was teary eyed as one of our Mito children Aislinn came up all the way from Denver to cross the finish line on Jacob's bike. I felt a little piece of Jacob was right there with all of us.
We made it home Sunday evening with full hearts. It was time to get the dirty bike gear in the laundry, and pack a suitcase for New York! Sarah and I left that very evening on the red eye flight to New York. We arrived early Monday morning to the Big Apple, Sarah and I have had a wonderful week so far (a separate post to follow), and yesterday morning I got to present at the International Patient- and Family Centered Care Conference in New York City with Children's Chief Medical/Quality Officer. The title of our talk was "Engaging Patients/Families in Harm Prevention - from Board to Bedside".
Right now, I don't know what the future will hold. It feels like all cards are on the table. I do know I want to keep Children's in my life. I want to continue being a Parent Partner, and see how that will continue to unfold. I want to stay involved.
When we don't present, we ride!
Good night from a New York that never sleeps.
Much love, Maria.