Every once and awhile I will break down and post it like it is. This whole burn thing really stinks and today was an especially difficult day. It is not just the drama of his care, the pain he is in, and the emotional stress and heartache - really, I suppose, it is just not knowing what is happening to his skin on his head and not seeing any end to his suffering any time soon. Oh Great Physician, please enlighten the doctors and guide them towards a cure!
And if anyone has any suggestions or knows a dermatologist, I'm all ears!
The following is a post I put up on Facebook earlier this evening:
Another spot on his head was starting to ooze, so I am now actively tending to 3 major areas on his head. 4 spots on the left side, a strip at his hairline on the right side and a patch behind his right ear. I applied the first calendula treatment last night and it completely broke through the scabs overnight (this stuff is amazing!) So now it will be a matter of getting it all out of his hair. The consistency is similar to a mixture of peanutbutter and gum, so I am sure you can imagine how difficult it is to get this out of his hair in areas where his nerves are exposed. This morning's cleaning and bandage change took almost 3 hours. That was not 3 hours of constant work, mind you, but it was a tiresme process all the same. (This evening's bandage change went much faster, thanks to Jay pitching in and taking over.)
Aside from the pain he is in, the worst part of this is his anger at me. He frequently asks me to leave the room and says he does not like me, etc. There are times in the evening when he sorrowfully apologizes for his behavior and when he curls up with me and says, "Mom, I like you" which is beautiful, but more often than not I am the dreaded 2 headed monster who constantly chases him around with a soapy washcloth, medicine syringes and blood pressure cuffs. I am so grateful Jay does not have to do this all day, too, so that Fulton has a parent he feels more relaxed with.
I understand this is the way it has to be for now, but it still hurts a lot. My head knows this will get better and one day he might come to know what I try to do for him. But it is not about being appreciated. This is my cross and while I am trying to carry it well for Our Lord, it hurts to see that this love I have is somehow not being transferred to my son - that he is somehow not picking up on my love and is instead pushing me away.
But enough about me. :)
Thank you for your continued prayers - I look forward to reporting more good news in the future and not so much depressing stuff!