Children who go through unimaginable things are wise beyond their years. They get things, things which adults don't sometimes get. I believe they know they are dying, they know there is no getting better...they know what their bodies can and can't take. They know they are getting tired and weaker. You can see it in their eyes, hear it in their voices and the things they say. You see it in their smiles. They may not be able to express it in words but they know and you know.
It has been over a year since Ian's last hospital stay. We have managed to keep him healthy, to keep the nasty out of our home...but we know it will come in again...it's just a matter of time. Since his last hospital stay, we have had a similar talk with Ian about Heaven over Hospital...he gets so much more then you think. He knows what is happening with his body, he knows he is dying, knows he won't come off the vent, knows what he knows. He does not want to go back to the hospital, he doesn't want to be home, he wants to be at the Gilchrist Hotel. He knows heaven over hospital means he will be loved by many others he has not met yet, mommy, daddy and Becca will get there later after him. He knows he will be out of pain, running, jumping, walking, cutting, speaking, eating, swimming all the things he watches others do, all the things he used to do.
Brian and I have decided to let Ian make this decision, to agree with his wishes...we completely and whole heartly agree with the parents of the little girl.