How Are You?

Everyone asks , how are you doing? We are doing okay. This is so hard. I can't believe Jack isn't here with us. We miss him so very, very much. He was such a special spirit and added so much to our lives. He went through so much to live, it is awful to think he isn't here to really live the life we wanted for him. So we are sad a lot but Will is our joy, he keep us going. He is so verbal, always talking about Jack, wanting to wear his clothes, play with his toys, etc. He still thinks Jack is in Boston with Dr. Marx, sometimes I don't even correct him. How can I explain this to him when I don't even understand it?

This is not what we had planned, obviously. We always wanted to be a beacon of hope for other parents, sort of, "look at this child, look at what he has been through and he is still here". A "we can do it, so can you" attitude. That is all lost and we are trying to make our way through it. We are not a beacon of hope anymore, rather we are all heart parents worst nightmare. That is not who we want to be, or what we hoped to be.

So that's why we are trying to spread a little sunshine with Jack's Heart Fund. Jack was such a compassionate child, in fact people would tell me how compassionate he was even at an early age. His heart fund will hopefully carry that compassion on in his memory, helping out others who were in the same situation.

I will never stop blaming myself for what happened, or stop asking myself what could I have done differently. I know so many decisions were out of my hands but ultimately I/we signed those consent forms. I pray that Jack doesn't blame me or hate me for what happened, or the pain he was in. I was only trying to do my best for him, and give him the life he deserved.

Funny, the circumstances that led us to Boston. I remember this time last year, we were so full of hope, worry and promise. We knew that Jack would be given his life back in Boston, we believed in so much. Now we don't have him and have to accept the fact that we will never know why. That is hard for an old mom like me to accept, since I would have traveled anywhere for Jack's care.

We miss being in Boston. There was hope in Boston