Our day started with me picking him up off the ground from passing out in the bathroom. I packed and cleaned our room and just wanted him to be home and happy and healthy. But this crazy new rash, wo don’t know what it is. So we stayed and didn’t get the anakinra.
So the rash is worse and he’s screaming his legs burn and he’s in pain. Not 2 hours before that he was sitting up and laughing with me. I felt so helpless watching him hurting and his hands swelling. I just want someone to help him. I keep talking to him in a calm voice and telling him to breath that it’s going to get better, but I don’t know that it is. I don’t know what is happening. The machines are going off and the respitary theripist is there and they are putting him on oxygen and it’s only helping some. I’m terrified because his hands are swollen and I don’t know what that means. I’m afraid he’s going to swell so much that he’s going to cut off the blood to his hands and loose them.
I just want to scream at the Dr’s to help him, fix him. All the while I have to be calm to help keep him calm. It is so scary I don’t know if I can do it. What if I make a mistake and he suffers for it. The responsibility I feel for his life is breath taking. It’s like everything rests on my shoulders and I have to process all this information because if I don’t think of all the horrible things that could be wrong no one will and something will be missed.
Yet while all of this is racing through my head and my heart I am face to face with my precious boy talking to him, telling him it’s going to be ok that we are going to fix this and he just needs to breath and not worry. I just want to pull him into my lap and hold him. I want to kiss it all away.
The other night I was holding him through a set of bad shakes and I remembered the song I would sing to him when he was a baby.
Put your head on mommy’s shoulders I’ll whisper in your ear as I hold you near Avery. Put your head on mommy’s shoulders I wipe your tears as I hold you near Avery.