The Dog Days of Summer suggest relaxing afternoons in the hot sun. Those dogs do not live in San Francisco and care for a disabled teenager. Here it is cold and foggy and we will do anything but laze.
Today is the last day of summer school. From 1:15ish today until 7:30ish AM on August 19 I need to keep Maggie entertained during the hours she is normally in school. That is not easy. I'm tired just thinking about it.
Maggie needs a lot of stimulation and entertainment to keep her satisfied. She is a bright interesting young woman who needs intellectual, social and emotional input but because of her physical limitations, she cannot do anything for herself. That means it's up to me (or someone) to provide that input.
Fortunately, Maggie is so engaged that she enjoys every outing, so it's not terribly difficult to find things to do, it's the actual DOING of them that is hard. It's mentally and emotionally stimulating for her and physically exhausting for me. It means that much more lifting and manipulating wheelchairs and just being "on." When you hang with Maggie you have to be "at the ready" every minute to jump in with the suction machine or a feeding or other interventions. There is no down time whatsoever.
Things will be complicated a bit more this summer because of my schedule. I have always worked from home and still do, but now I have something more. For the past several months I've been working outside the house three mornings a week while Maggie is in school. I work as a Parent Liaison at UCSF Benioff Children's hospital, helping parents of hospitalized kids navigate the hospital stay getting information and (non-medical) needs to the people who can help. I like doing it and plan to continue during the next few weeks that Maggie is out of school, though I'm cutting the hours back a little bit. That will take more juggling and will give me even less free time, but sometimes that's just the way it is.
Next week Maggie has Girls Rock! camp every morning. She does love that. I will take her in the mornings and stay on the days I'm not working. She will have to have the nurse with her on the other days. But I am still her transportation. I will pick her up when the camp is over and take her home.
The nurses are here with Maggie, so she will be safe and well cared for, but she will not be entertained when I'm at work. A couple of the nurses will take her for walks if time permits, but others insist she stay in. I yield to their professional assessment/opinion while they're here. But once they're gone, it's up to me again. I will just have to find things for us to do in the early evenings for a few weeks. When Steve is home we can do things together, but most outings will be before he gets home in the evening. Maggie is already looking forward to Summer evenings at the Mall!!
For the first few days entertaining Maggie will be a cinch. Her brother Tim returns today after 6+ months in Chicago. Maggie is beyond excited to see him again and just having him in the house will entertain her to no end. He can take her for the occasional outing as well and that will be so much cooler than hanging with mom.
Of course he will find a new job and have his own schedule, but initially that will be a big help. I'm sure he will do some of the lifting for me as well.
So I am holding my breath and jumping into the dog days of summer. We will hit all the sights and sounds of San Francisco over the next few weeks.
Stay tuned for a local travel log.
Once again, I'm reminded of how wonderful it would be to live closer to one another so that we could do these things together with our girls.
ReplyDeleteI hope you'll have some time to yourself, though, to sit on a chair and just relax.