This morning, Julia is taking The Ride, Massachusetts’ para-transit service for people who can’t use public transportation or drive due to disability.  She is going from home to Elliot House and back again. She needs to be met on both ends right now.  It is a restriction that can be lifted in the Spring if she does well.  

And this gives me an extra two hours in my day, plus no energy drain from the driving.  I did not realize that there was an energy drain until we came back from traveling.  I had not been responsible for driving for 6 weeks and I felt the difference almost immediately upon taking it up again.

This morning, Julia just left, and I feel the quiet and peace settle over this house like it never has.  Like the old feeling when she was in school and the bus came to get her or she went to catch the bus. I feel rich beyond measure. This is a moving on from the 11 months since she has been without programming.  The Ride doesn’t give her programming, but in a sense, it gives her just a taste of her old school life when she had direction and support.  I didn’t know that she would feel this way about a para bus picking her up but this morning, after 3 rides this week, it clearly does. For the first time in 11 months, I feel like the services cliff that she fell off in January is becoming a ramp.

Please to all the gods that that thought can become reality.

And I see too how the last 11 months of driving Julia every day to and from Elliot House and art class and rowing and music has taken a toll on me.  I’m fine doing that kind of driving duty during the summer—like a three month assignment, like I’ve always done for Julia during vacations, but full time like I’ve been doing is numbing.

The Ride is also a bit of respite. As much as our traveling did some good things for Julia, reset some of her behaviors, it was 24/7 with me with no breaks.  I think we both need respite from each other. This weekend she has the chance to do respite at the Sharon Respite House.  She says she is ready to take The Ride from Elliot House to the respite house on Friday and from the respite house home on Sunday. I need to check it out with the respite house staff but it would be a lovely break from that driving.

Interestingly, I have never minded driving before and I don’t think this is just because I am an old lady.  It is the constant driving that is too much.  It is also the constant responsibility for Julia’s whereabouts. I am weary of parenting and I want the old lady life that I had vaguely planned for.  So, what if that plan, which really was hardly a plan, was sidetracked by David’s death and moving and losing all semblance of a working life.  And I guess it was no where near a plan, just a hazy vision that I expected and didn’t really think about.

I know some of what I want and I have been aching to begin.  I want real writing time—not time at the end of the day when I am exhausted (and as an old lady I am exhausted at the end of my days). I want quiet time alone to make art. I want to be able to engage in more of the activities at HILR.  I have not gone to the extra lectures or music events.  I have not prepared and taught a course.  I also want to take on some leadership rolls at FUSN (church). I was asked last spring to take on two position and I needed to refuse.  Until Julia has programming, I just can’t stretch too thin.  I need to be able to spend days with her keeping her occupied, I need to be researching and keeping in touch with every available program that might one day have an opening, I need to push through a plan for an individualized Participant Directed Program for Julia so she has some supported programming for some of her days,  I need to research housing and long term plans for Julia.  All of that takes a lot of time leaving me with very little time for my not-Julia interests. 

And besides HILR and FUSN, I want to have some fun. I want to go to new art exhibits and have lunch with friends. I want to take up some role in the disability advocacy community. And I want time to sustain my meditation practice, to go on a retreat once or three times a year.  This has been out of reach for a long time, since we moved, since Covid shutdown, since Julia turned 22 and educational supports ended.

And just being given this one-hour break because Julia took The Ride this morning, and just because there is the possibility of a respite weekend, my mind floods with all these somewhat selfish wants and needs. And this is selfish in a very okay way.

And all of these feelings are not unique. So many caregivers of young adults with disabilities face the same challenges, and as we all get older the same fears that if we cannot set up a life for our adult child right now, what will happen when we can no longer do all we do now. There are a legion of families just like me.  And we are so quiet.  We do not dare talk too much about what we need and want.  I know this is true.  I wonder what I should be doing about that.