Bon bons and soap operas

Today is get better day. I have been sick all week. I caught Maggie’s virus and wow, it knocked me for a loop. I tried to ignore it on Monday and stayed in all day Tuesday. I tried to ignore it yesterday and I’m home all day today. I hope that staying in today will knock this out once and for all.

I hate sticking around here when I don’t have to. There are so many days that I have to stay close to home to finish something or wait for somebody, but not today. I do not have any work projects at the moment, the house is clean (but there is a pile of laundry to do) and I am not expecting any deliveries.

It is actually unusual that there aren’t deliveries or somebody at the house. Today is Thursday and it is the first time all week I do not have to wait for a delivery. The g-tube supplies and the food came yesterday, the diapers and those supplies came Tuesday, the trach supplies came Monday and the oxygen was delivered last Friday. Someone has to be home to collect this stuff and they all give that “delivery time window” that never really applies. Actually, the diaper delivery will leave them on the porch but everyone else needs a body here.

Caring for Maggie is as much or more hands off work as it is hands on. There is a lot of “management” involved. I have to keep all the supplies flowing, satisfy all the requirements for the insurance, medi-cal, the Regional Center and California Children’s Services, deal with the school district, arrange the nursing, do all the nursing paperwork (that’s about 10 hours a week by itself), keep the elevator, wheelchair and other equipment serviced etc, and program her talker every night. There are also the almost daily trips to the pharmacy or calls/visits to anyone of a number of medical professionals or runs to the school. This is in addition to the emergencies and the lifting, feeding, diapering, suctioning etc that I do when the nurse isn’t here or help the nurse with while she is.

Of course, that is just the extraordinary stuff; I still have the regular household responsibilities that everyone else has.

Sometimes I even get to just be mom.

Not often enough, though.

This is why I get a little more bugged than most by comments suggesting I have "nothing to DO” while Maggie’s at school. Or by people volunteering me for things because I have free time. I do not have any free time. Zero. I am not even familiar with the concept of “free time”. Because I am stuck in the house so often I find time for writing and other projects, but I am not free to do what I want. I have options within my narrow range of opportunities, much like a person who works full time. Only this job never stops.

So today, I will just concentrate on getting better and be happy that the doorbell will not

ring. Maybe I'll just eat some bon bons and call it a day.