Rainbows for Hero’s Walk 2018

For our second year in a row, we were blessed to be able to go to Duke PBMT’s Family Support Services Rainbow of Heroes Walk. It is such a special event where we celebrated and remembered and honored and thanked. Oh God we are so, so thankful. We saw some families and patients whom we shared time with while in the 5200 pediatric bone marrow transplant unit. As you might imagine, it can be quite emotional for all the reasons you might imagine. Some families didn’t have their little one there. They didn’t get better. These families come back to honor them and be surrounded by those who “get it”. And then there were other families like ours who were there all together, chasing their children as they made giant bubbles or bounced or climbed the rock wall or ate cotton candy and snow cones. These families, like ours, gave big smiles and hugs to the medical teams of doctors and nurses. I think the doctors and nurses need to see them too. See them out living and growing up. And somehow, we are one of those families. One of the blessed able to help remind them of why they get up to do what is arguably one of THE toughest jobs I could ever imagine. But on this day, between laughs and tears, is this amazing space where celebrating is mixed with remembering and honoring. And as we simultaneously release balloons to emotional music, watching them float as far away as the eye can see, we stood together, Brian and I, feeling the weight. And feeling the relief that she’s still here. We are all still here. We held Taylor as she teared up, because she’s old enough to understand in that moment all of the emotions of those around her. Her tears were real but also mixed with a smile because she has her sister right there tugging on us to go do this or that. And then there’s our buddy, Parker, running around with an extra balloon he decided to keep and play with. The innocence of childhood blending with the enormity of life and death—both of those hung all around us that day.

We continue to take it all in with the hopes that God is still weaving. I like to think that every experience is like another thread binding and forming into the bigger picture. What will our “picture” look like in the end ? As each experience builds and combines with the next, I can’t help but feel so blessed to be a part of any of it.  I read this quote recently and it really spoke to me as a witness of who Charlotte is and also who many kids and families, including my own, are in the face of this reality: “If God puts a Goliath in front of you,  he must believe there’s a David inside of you.” I believe even before we could know it, God has given us the tools we need to do what is being asked of us. Or atleast the ability to learn it all along the way. And we still have so much to learn.

As I continue to have trouble uploading photos, I will post the ones from the previous post of our trip to NYC for injection 6😊I’ll post rainbow walk pictures when they become available. I just haven’t had the time to figure out the issue with uploading from my phone to this blog. In any case, as you can see...she is feeling great and living up life!