CHILDREN'S AND I

As we're taking one step forward, and also a few steps back, we are redefining the things that became part of our lives because of Jacob. Children's Hospital is one of those things. The hospital became such a big part of all of our lives over the last ten years. I don't miss the sleepless nights and the knot in my stomach from worrying about Jacob when he was really sick, but I do miss the people who cared and loved for our boy. I miss my team Jacob.

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.

It's a beautiful weekend, every single year. It's a weekend to remember a little girl called Samantha, who have gotten so many of us to rally behind the cause of mitochondrial disease. It's a weekend of hard work and so many good people. And then there is Heather, team captain of Summits for Samantha. She gets us all to decorate our helmets (wilder for some than others), to train and ride, and to raise money for this disease we all hoped we had never heard of, but so desperately need funding and a cure. And as much as I wish losing my boy wasn't ever in my cards, I am so very lucky to have Heather next to me. I couldn't imagine a better friend to take one step at a time with, and who truly gets it. It's the club we never wanted to join, but it's a club we are today forever grateful for.

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".

 It was the first time I presented to a full room since Jacob died. I know the content of our presentation inside out, but I seriously didn't know if I would be able to make it through. The reason I really wanted to do it was to honor Jacob, and keep the work going I so strongly believe in. I could hear my voice break as I had to tell the audience that Jacob had passed, and it felt really weird to talk about Jacob in past tense. I am very happy I did it. I love to present, and I think I did pretty well. I got so many hugs from strangers afterwards, and was told I am strong. I'm thinking it's Jacob who still keeps me going. A parent partner from Colorado who attended the conference gave me a little Minion just before we presented. The tears didn't come during the presentation, but they came later as Sarah and I were waiting to board the ferry back from Liberty Island, the feeling of emptiness and sadness. Grief is not always predictable.

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.