Ian telling us he did not want to go to the hospital anymore and was OK going to Heaven threw us for a loop. It pretty much knocked us down...hard.
Brian and I have had many conversations over the past few weeks with each other. We have also spoken with other parents who have lost a child, members on Ian's Gilchrist team, Becca and Ian. Trying to decide what our next steps could be while keeping Ian's wishes in mind as well as our wishes for him, Becca and ourselves as his journey continues has not been easy. These conversations have brought tears, laughter, smiles, as well as more tough decisions.
Medically Ian is stable. The changes we are seeing are with his outlook and enjoyment of things. Ian being OK going to Heaven and not wanting to go to the hospital is a major shift. The smiles and laughter are not there as much, oh we still get them, just not like we used to. There are times when you can see the exhaustion on his face.
So what to do? We have decided we are going to try to care for him at home if/when he gets sick again. We have been given some more tricks for when this happens along with the knowledge that his Gilchrist nurse will be over to help us assess the situation and make decisions on what to do...continue treating at home or go to the hospital ....we will have to continue to take it one day, one minute, one second at a time.
"For now, remember this: When you feel low on smiles and you feel it’s over before you’ve had a chance to begin, dig deep and remember your purpose. Laugh loud, live in the moment and dream big. And most of all, remember you matter in this world."