Marathon Monday

On a day when many people I know are standing at the starting line waiting for the race to start, I am sitting here in my pajamas sipping the last cup of coffee out of the pot. People’s excitement is threaded throughout my FB feed and it is hard not to get excited for them as they make their way to the start of one of the most memorable run of their lives. I am happy for them and thrilled that they get to have such a coveted spot that so many people train tirelessly for and not get. The hope I want to talk about today is my fading hope that someday I will be one of those people.

When Izzie was accepted as a patient partner for Miles for Miracles, I was over the moon excited. This chance would bring me closer to that dream I had of running someday. This would also allow us to participate in the greatest race of the year. What I didn’t count on was other people around me not sharing the same excitement.

When you submit to be part of a great fundraiser such as this, everyone needs to be on the same page. Expectations need to be set and a strategic plan needs to come together. It also helps if the people you are partnered with make a connection to your child. The runners we had didn’t meet Izzie until we had our fundraiser for them before the race. I would be sending emails and forcing the connection. It felt very awkward. It didn’t feel as though they really understood what our life was like  as a medical family and how fortunate we felt to have Boston Children’s in our lives. I was hoping that we could be at the Miles for Miracles events together. That didn’t happen. On the day when we were to meet the runners at an event sponsored by the hospital, neither one was able to make it. I felt like my dream of having this inspirational experience was fading fast. This wasn’t what I had thought it would be. It didn’t get much better after that first event.

We planned a fundraiser and thanks to my in-laws, was a huge success. I guess it was a good thing that they took over where they did and made everything happen. There were many parts of the planning that I hadn’t though of but they did. As the days came closer to the date,  I began feeling like this was not a good idea. The parts that I did do – the brochure, posters, and news article, weren’t good enough. I felt very disconnected and not an important part of the process. To make matters worse, the runners who were running for Izzie didn’t understand that we were raising money for them. I can’t imagine how I would have felt if they didn’t show up.

After the fundraiser, things didn’t improve much. The benefit recognizing us for our efforts was very stressful. We didn’t meet or socialize with other families like I had wanted to. This wasn’t what I had planned for in my mind and it was very disappointing. My family knew that I was upset and chalked it up to my typical moodiness.

Race day was exciting and we all were at the BCH area in Wellesley to cheer on our runners. For a little while I felt like we had done the right thing and that we were part of something great. We were part of something great. We helped raise money for the best hospital in the world. We were just like all the other families that were there but we hardly chatted with anyone. It wasn’t the camaraderie that I had hoped for. None of the Miles for Miracles was what I had thought it would be for us.

I am not blaming anyone here. Chris did his best to try to make it be successful and so didn’t other people. My friend had his band play for free and that was a huge success. Other friends from my meetings and such came and supported us. It wasn’t a total loss. What I am starting to see now is that I had forced something to happen instead of letting it happen. I had taken a dream of mine and forced others to share this dream.

If and when I do apply to run for Miles for Miracles again, I will make sure that everyone knows my intentions and is willing to support me. I want to run for Izzie, and for many of the cardiac children who are her comrades in arms on 8 East. She still has her moments and our hopes for new treatments for her condition grow every day. Recently, she was hospitalized overnight and it was a stark reminder that she is not cured. We need more options for her and for others like her.

Tuesday we have a cardio appointment and we are taking Addie with us so she can see first hand that these appointments aren’t always fun. Sometimes it is really hard to be a patient and Addie needs to see that. She needs to understand that her sister didn’t ask to have a heart defect, and wants to be just like her. I think this non-invasive appointment is a great way for her to see this.

I wish everyone on the Miles for Miracles team great luck today and thank you for running for us!