Tonight I was painfully reminded that I am human (who would have thought it?) and that at times I don’t have it all together. A small mistake made Lennon cry out, his belly hurt and vomit. Normally I would panic but one look at the feeding pump and I saw the problem… I forgot to change his rate from the day feeds to his night feeds. Lennon the trooper…went to the bathroom…got undressed…got cleaned up and is back in bed, while I’m sitting here thinking how did I miss this and why didn’t I pay attention to it? So yes I recognize I am human, but I’m still going to beat myself up over it because it didn’t have to happen.

The other day I got into it with one of my other kids because I was told I need to do a better job watching him so that Lennon doesn’t go into his room. Say what? Are you serious? It’s not like this is a big house, and oh yea I do watch him (and Lennon was in his room at last check). I am still baffled by this a bit…though I recognize its part of the teen turning adult…but yet again I am baffled..has he not been here?

Perhaps it is because the schools are giving me the grief of allowing his private duty nurse to be with him. We were told in the meeting that if he has a private duty nurse that they couldn’t do anything for him and that the nurse has to handle everything. So if Lennon cuts himself…the nurse is in charge…no one will step forward to help other than calling 911. If Lennon has a dirty diaper, they can’t change him but have to wait until the nurse gets there. I keep thinking I’m making this up, but I wasn’t by myself in the meeting and I know I wasn’t dreaming it or imagine it.

It’s like what the hell.

I talked to the nursing care provider and even they are like this is incredible and ultimately the bottom line is…its about money. Why is it about money? Because if nursing care is provided by a private provider than the school isn’t getting paid for it by doing the same things. It’s a circle and we all are shaking our heads. This morning we went into school, to make sure that staff who will be handling the feeds knew what to do and discuss what to look for in case his ammonia is up. I want to be vigilant about his care, but I don’t want to be over-paranoid and I don’t want the school to be overly paranoid either…just do what a school is supposed to do…teach my child!

Due to this no-nurse in school dilemma, I will be left without a nurse on Friday. Lennon is returning to school Thursday (yay) and so care will not be needed until he returns from school (12 p.m.). I have nothing against the nurse, and I understand that she lives about an hour away. At the same time I will need to shift/change my own schedule…did I mention I am in my internship? I spend an hour talking to the guy who manages the nursing care, laying it out and clearly Lennon qualifies for nursing care not because of my schedule but because of his needs…because of his state of health…because of his medical challenges… though it certainly adds to that I am able to do the things I need to do.

I try to keep things together…I try to make sure that all kids have the attention…I try to make sure my relationship has the attention…I try to keep my business going.. I try to manage/incorporate my internship.I try to stay on top of my school work…and tonight I just don’t have it together!

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