Dear Jakey,
It seems that all around me, or at least in this world that I know so well, there is so much death lately. And such hardships for little fighters. And Jakey, it sort of crushes me each time but I also can’t stop following the stories and the fights of other kids with such unusually tough and difficult battles. For so much of my life I lived without knowing much about what others endured. I lived in a bubble, and even worse, I thought because of the work I did in Boston and the people I surrounded myself with that I wasn’t in a bubbly. But the fact is that until you really see first hand how difficult life can be sometimes, you are sort of in a bubble. And until you read the stories of James or Liam or Charlie or Colden or Ashlyn and can relate to them first hand then it is just impossible to comprehend the fears and thoughts that other mommies and daddies have. And the real twisted part is that as I follow James’ journey, I think about you all the time. And as his mommy has to make some tough decisions that I didn’t make, I almost find myself jealous because he is still here. And you are not here. And I read about the kids who died – 3 in the last week- and while I never met them or their families there is this world of other families on facebook that I never really had when you were here. I just was too busy then to pay attention and know all I want to know is what they are trying and what their doctors say and I wonder if any of it would have helped you. I just miss you so much. And I would do absolutely anything to have just one more minute with you.
Love,
Mommy