the sisyphean task

could be described as an eternity of frustration, remembering the myth of Sisyphus shoving the boulder up the hill only to watch it roll back down, for eternity as part of his punishment.

i may not be Sisyphus, but i am worn out.

the fatigue from the constant careful watch over my daughter's care the last 5 months, is beyond exhausting. it becomes emotionally draining and your body is physically shot. you wake up, and the stress is there. the days of long drives, the court dates, the discussions, the 5 months of 4 separate doctors, the 5 months of 4 separate doctor's staff and treatment teams, discharge planners and between to counties, makes a head spin at the thought.

it's been 5 weeks since her transfer to this new hospital.

this increased driving distance, and travel time, across several freeways, it's grueling, and daunting.

but, my daughter gives the energy to the mind, because afterall it is her, not me who is there. she needs her support and needs help communicating, and more. the discharge plan of course is being prepared, at least one hopes so, because immediately upon arrival everyone should have a plan of action in place for the future.

yesterday, the defeat felt when a planned outing that came after a long and important meeting, fell apart. nothing was ready to go, no action had been seriously taken.

i could walk in there as a mom,like at home and help get the shoes, socks and coat ready, or look in her room to get them, but i am restricted as much as she is there. this is afterall, a locked psych ward with other patients and i cannot go just anywhere i want, thus my reliance on the staff, as much as my daughter and the team relied on the staff to make it work. simply put, it isn't my job, or i would work there.

we have a special need person in a situation we are trying to make work, and to prompt my daughter for nearly the entire time the pass was to be, to get her coat based on believing it was in her room, giving her space to process and think about going outside, at that point was my job, and what i did. i prompted, based on what i thought was in place.

to have someone tell me the coat was in fact never there, well you know it feels like a smack in the face, a let down and i am tired. i didn't sleep well, the entire system beats a person down so hard it's amazing i have the stamina i do. i say that, knowing it could sound arrogant. it is not.

this, this system. bouncing people around, from doctor to doctor to hospital to hospital from year to year over a decade, well, let's say i could write a book about just that. each hospital, each doctor, each set of medications given, each year, each diagnosis.

--

part of taking care of myself is to take a break. today was a planned break for me, i did that and told my daughter yesterday i was taking a day off and would be there tuesday, knowing we had the walk, i thought i better get my batteries charged a bit. one day off in months, knowing things were running smoothly, no meetings, no leftover business, no phone calls looming for ambulance transfer, no court dates, no court testifying....just today, a time to just be.

yeah, i hope another pass works the next time, because i am tired, but it's my daughter that is the person of focus. i try to write, at times how this makes me feel, so others might understand that it is not easy. but, it's my daughter who is locked up.

5 weeks to finally get her shoes and coat to go to the enclosed area. 5 weeks to get a pass to walk outside. i wonder what the next 5 weeks will encompass. i wonder what the next 5 months will. will this ever resolve, or will this boulder roll back down for another decade.