I have a friend who has a friend who wrote a book called The Chicken Who Saved Us by Kristin Jarvis Adams.
I bought the book because I too have a friend with a chicken and an Autistic Child. It is about a boy and a chicken with a deep connection but more than that, it is about a Mom seeking to help her son with a severe chromosomal problem. He was a child with T8M, a defect that puts an extra chromosome in some cells but not all of them. It is a very rare and it affects patients differently.
In this case, Andrew's bone marrow producer attacked his own body and was slowly killing him. After much falderal, it was deemed he should have a bone marrow transplant at Seattle Children's.
As the mother of a BMT child, I was hooked. It was absorbing to read about a Non-Cancer Mom's experience through the process. It was like watching my own daughter's journey.
Child is sick.
Child is eventually diagnosed.
Child is deemed ready for transplant.
Child is made ready for transplant.
Child is taken to the verge of death and transplant happens.
Child hovers on edge of death for several days.
Child's family tries to get back to normal.
Major parts of this story are my story. Major experiences are my life for the past few years. Major parts ring so true.
As I read this book, I realized the "Aloneness" of the mom is so apparent. I realized that while Seattle Children's does amazing things, they are missing the Mom's connecting to Mom's piece. I know they try. It is not enough to have a meeting at the Ron Don house or pizza in the conference room. The efforts to reach each other has to come from us. Those of us in the same aquarium. We need to be the ones that reach out and connect to each other.
Being a Cancer/BMT Mom is such a fragile and unusual thing to be. It is a combination of Tigress, Jelly Fish (the stinging kind), contemplative nun, superior researcher, knower of all things. It is not possible to understand what it means to be a Cancer Mom. You can look at one and imagine you are one, but you can't ever comprehend what it is to be in this small well defined and unique group.
As a group, we keep trying. Reaching out. Making noise, trying to send those lifelines to those who are deep in the battle. I think maybe this book will help other's realize the needs and complications of those in our exclusive world.
Read this book to understand your journey and to help those currently on the same path.