Mar 5, 2016 (Scott)
My own experience of Maya’s illness and her treatment so far is curious. Time moves fast, and it also moves very very slowly. We’re so thankful to have a clear pathway of treatment before us; but then there is to deal with every moment along the way that is hopeful or uncertain or just scary.
Maya has started to learn about what she’s dealing with. Truly, it amazes me that she could have fought so hard, over many weeks now, not knowing what she’s fighting against. Maybe for her it’s simple–she’s fighting to feel better. Or maybe she’s fighting to wipe the weary looks off her parents’ faces. We’ve started to talk in some detail, when the mood is right, about what has gone wrong with some of her cells. I’m sure I do a poor job of explaining (full disclosure I earned a D in Cell and Molecular Biology), but she listens and seems to accept most of it. She knows this thing has a name–Leukemia. And she knows there will be more meds and pokey butterflies on the long, long road to overcoming … I just realized she may see this as a road to overcoming pokey butterflies… and I might see it that way as well.
Sara and I have started to learn that a challenge like this can both pull apart and bond a family. The tendency, at least for us, is to divide up tasks and take on the necessities as efficiently as we can. At a time like this there are new necessities every day–so many that Sara and I might soon not recognize each other. Our Community–our extended family–has done everything within its power to ensure that those worries that would pull us apart have already been taken care of. It’s possible there are no words to express the depth of our gratitude for this, but I will try at least to express what it means: This support has allowed us to focus on providing the best care for Maya, to keep our two kids growing up together each day, to begin settling into a new home, and to be free from worrying about immediate financial issues. This is more than support, more than a safety net, this is a bullet-proof shield-wall of kindness and love, praying, working, and fighting to protect a three year-old girl from sickness and fear.
With your help we’re succeeding. It’s still early, and there are twists yet to come I’m sure, but Maya is stronger for all your efforts. There is great power in Community, and to be the beneficiary of such power may still be indescribable. At the very least, it is humbling to the very foundation.
Maya, Lincoln, Sara, and I all ate frozen yogurt around the table tonight. Maya insisted that she sit on my lap, and she also insisted that she should have one of the pink spoons. She had chocolate-mint with broken pieces of sugar-cone on top, and it was very quiet at the table during this… thankfully we were delivered a large amount of yogurt. We saw some pictures of the scene at Yogurt Beach around the same time–orange balloons, bracelets, families, people everywhere. These snapshots don’t do it justice, I’m sure, but to see the smiles of those who showed up to support Maya hints at the energy that has been gathered to help a little girl fight an awful illness that no child deserves. In these pictures, Maya saw family and friends from every corner of her little world–perspective on this kind of thing is something even adults struggle with, so I know it’s hard for her to understand, but I know she’s starting to connect these scenes and use them to color her experiences. She may not know exactly what she’s fighting against, but she knows very well who is fighting with her.
Thank you to Yogurt Beach for your unbelievable generosity and to Swayzee Elefante for your dedication, energy, and caring (I told Maya you might visit later on–she demanded you visit ‘right now!’). The pictures alone from the event are uplifting. We wish we could have been there; we promise to visit as soon as we can. The yogurt was absolutely delicious (the coffee flavor was outstanding).