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We saw the Rockettes, dined at Carmines, stayed at the W Hotel (a Lea fav!) and had brunch and a shopping trip at American Girl.There was still darkness, but there were more moments of joy and happiness than usual.We saw Disney in a way that we never could again, and I am so grateful to Make-A-Wish CT for the incredible opportunity and all they did to make our visit so special and so amazing.…something very beautiful happens to people when their world has fallen apart: a humility, a nobility, a higher intelligence emerges at just the point when our knees hit the floor. It is easy for people on the outside looking in to say “Your child was not given a death sentence by a disease that leaves no survivors. You are not the mom who is getting emails of support from other amazing, strong and brave moms who have already lost their children to DIPG… You are not a mom counting the months left on your fingers, waiting “for the other shoe to drop” and for your six year old daughter to die.” I could lie and tell you that “every day I have a renewed hope…” but I don’t… I made a pact to be honest to a fault with the story I tell here and so there it is, in it’s ugly glory. As a part of this awful club you certainly meet some kind, generous and amazing people.-Marianne Williamson Unlike the Macy’s Santa we saw just one day prior, the Santa at the Jimmy Fund clinic in Dana Farber knew better than to wish us health in the New Year. We have been on a wild ride the past few weeks with Disney, NYC and Dana Farber all stacked one upon the next.
I tell her how proud I am of her, and her bravery and strength through it all.
Dana Farber the very next morning was especially hard for me this time.
I was unable to hold my tears back and found myself taking extra bathroom breaks to dry my eyes.
I continue to be amazed by the kindness, generosity and support from friends and complete strangers.
There are some really amazing organizations out there, many that started from a place of tragedy, and our family has been blessed to be the recipient of many of them.