On Saturday we took the whole family to the Monster Truck show and let me tell you that Lennon was elated and excited. He could not wait to get there (he was talking about it all day). He really liked the light show (the trucks were making their entrance and being introduced) and the fact that one of them fell over doing a trick. he loved the cotton candy and he loved the popcorn.

I remember sitting and reflecting that a few years ago this would have been impossible to do because it was challenging to take him to places without ‘crashing’ into a high ammonia level or simply because he couldn’t sit still for so long. He stayed in his seat just about the entire time and smiled from ear to ear. Once again I caught myself in awe of him, his will to live and what appears to be a carefree attitude.

Today is going to be an interesting day. Lennon already was at UVA getting his labs drawn for a weekly check on his levels and here shortly I will be heading to a meeting with the school to get him re-enrolled. Though I am baffled of why this meeting. I told him he was ready for school (again), I told them he will have nurses with him (shoot he’s been approved for nursing care since he medically qualifies no matter where he is) and I told them that he needs feeds at 10 a.m. (even if they are only for 30 minutes).

It’s what I want, what Lennon needs anything else they need to take on with the nursing care provider and the doctors. The docs and nurses at UVA are awesome and baffled by all this ‘drama’. Though part of me certainly understands the legalities of it all, how much surer do we need to be? Do they care about Lennon, yes of course. I just never understand why these things are so difficult. So I have no idea why we are having a meeting, but we will have this meeting.

There are some days I wish I had the finances and the patience to home-school but unfortunately, I’m just not a person that could do that. It encompasses much energy that I am not sure I have or I can give. Working (my business), going to school from home and raising 4 kids often takes out much of my energy. I often feel I am not doing enough, but then there is the question of how much more can I do?

I was happy to get the whole family out on a night together because this doesn’t happen very often.

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