I am not articulate. I am tired and sad. And, I still must make myself go put away dirty dishes and pick up toys. But, for all three of you that are reading my blog, I felt I had to share the news I received today.
A major problem with insurance! I was scared to hope that we could actually go and be helped by those at NJ, but did not think it would be an insurance issue. I thought we had already covered those bases and had green lights. But, it seems that there is some code that Samuel's insurance will not cover. Regarding the billing of the actual facility---rooms, equipment, etc. He will be billed as outpatient, yet because he would be in the hospital all day/every day there is a charge re: the physical property, which, his insurance won't pay. Which would mean $6-9K out of pocket. Yikes.
I really do not know what to think. There is a part of me that still hopes. I think that's because I know he must go. I cannot keep putting these intense steroids on him, wet wraps at night and sometimes during the day, doing 20 other intense things...AND it not even seeming to help. When we go out of the house he usually wears pants so much of his flares are covered. But if I let him wear shorts, as I did today, people stop and gawk. We have had four people ask HIM what is wrong in the past couple of days. Most ask if he has chicken pox. I am sad, because he has noticed, for the first time, that others see a problem with his physical appearance. Lord, please do not let such comments and stares wound his heart in damaging ways. I know, I know, there are much worse physical conditions. But I have been aware that he notices that his body is not attractive, even strange, perhaps even ugly. He feels shamed. Dagger in my heart. This is why I haven't posted any pictures. I just feel I want to protect him.
I want to write a poem, or something about the experience we had driving home from a birthday party the other day. I really want to skip the details of the party...except the last one. As we were leaving he had a major itch attack and I had to carry him out. He screamed and cried and before I knew it, he had blood all over his legs and feet. When he finally settled down five minutes later, I turned around to look at him---I was overwhelmed by his adorable, yet exhausted face resting on his carseat. I mostly noticed his bright, blue eyes which seemed to be telling me something. Suffice it to say, it was a bit more than I could handle. The Mama Bear in me not only collapses with grief and compassion, but at the same time harnesses a vigilance that promises to help him.
Not sure I can help.
I want to write more later about what God is teaching me right now re: my powerlessness. Too late now.