Evan has been in the hospital for six days now and no going home date has yet been decided. This is one of the hardest parts of having a child with a disability or sickness. Being at the mercy of other peoples decisions. Waiting for answers. Waiting for the word that you get to go home.
For this hospitalization, we were given the option of when to come in. How do you make that kind of decision? It's never convenient. It's hard to miss work. It's hard to let mundane house hold responsibilities fall by the way side. I had to make a conscious decision to miss my daughters school holiday program and my moms graduation for her Masters Degree. After coming to the hospital we found out that other children are not being allowed as visitors due to the flu season. That meant Lauren would not be able to visit her brother. It meant my time with her would be limited. I feel guilty. I feel torn.
I get resentful that while we are in the hospital other peoples lives go on, while ours is on hold. Others complain about the stress in their lives and it makes me angry. It's selfish, I know. There are others who have it way worse than we do. No one knows the struggles in others lives, but this is ours.
I know that there are more hospitalizations and surgeries ahead for Evan. I'm not sure it's ever something you ever get good at, but perhaps time makes it easier.