A Bit More Time, Part 1

529493_10202549056155407_1676693927_n-It has been four years since I last attempted to create a blog.  All good intentions aside, like so many things I’ve started in my lifetime, this project was tossed on the “I’ll get to it later when I have a bit more time” shelf.

Isn’t that just like the human experience.  We allow ourselves to become so busy in our day-to-day lives, that we shelve things that we know are important and need our attention.  Usually we look back, see the dust gathering on top of these projects and tell ourselves, again, “I’ll get to it when I have a bit more time.”  Funny how we default to that way of thinking, as if we are promised more time.  And life has a way of reminding us that such thinking can be foolish.  We won’t always have that bit more time we seem to think exists.

While I only managed two posts, I’m surprised I actually completed the first one.  At that time in my life I was facing huge transitions.  My oldest daughter had graduated out of the school district’s special education program, so I needed to leave a beloved job to once again become a stay-at-home mom.  I forgot just how easy it was to lose track of time and get distracted.  I really did want to write weekly posts, but my days became more about being serious about helping my daughter transition to a more independent living situation.  And it was really hard for me to even consider giving up some of the responsibilities of caring for her, even though I knew that it would, in the long run, be better for the both of us.

Most of Dorothie’s life required my constant attention, and to some degree, supervision.  Living with a child with disabilities requires stealth like planning and organization.  I’m neither a planner nor well-organized. While I have good intentions, I get bogged down by the ideas and thoughts I have when planning. I guess you could say I start out with organized thoughts, but pesky squirrels in my brain keep distracting me.  Even when I remind myself it is time to attend to my writing, something inevitably distracts me, and I tell myself that I’ll get to it when I have a bit more time.

So, I stopped at two posts.  I hadn’t even finished the back story of why I had come to want to write a blog.  The first two posts were intended to give the reader a glimpse of our life thus far.  And that is where I stopped.  The transition didn’t go as smoothly as hoped, even though Dorothie eventually got a job and moved into a private adult family home.  It took us 6 months to find a job, which turned out to be worth the wait.  Then it took another year to find a home for her.  That “bit more time” I’d been hoping for never materialized. Or never seemed a priority to find.  And now, looking back, what I would give to have the opportunity for a bit more of that time.

The job was great for Dorothie.  It was as a storyteller and assistant at a preschool minutes from our home.  For the most part Dorothie loved her job, especially the opportunity it presented for her to work with children. And she got to use her beloved iPad, and ham it up as the story unfolded from her tablet.  In return the children enjoyed her enthusiasim and glee.  But, when she moved from our home to the adult family home, her commute grew longer, and she lost the enthusiasim.  Her job coach started looking for another similar job closer to her home.  He finally found a non-paid position minutes from Dorothie, but she didn’t seem to have the same excitement as she did before.P1030667

And transitioning into the home was not easy.  She loved getting her room ready, picking out paint color and window blinds. She even helped us paint. We visited the house with her a couple of times helping her get more familiar with the other 3 residents and the various staff of caregivers and supervisors. But when it finally came time to make the permanent move, she got really upset, which really upset us.  We bravely held firm and let her know that we were not too far away, and that we would come visit her often, hoping that would appease her fears.

After only a week in the house, one of the residents she’d most bonded with had to be taken, by ambulance, to the hospital where he remained for nearly 3 weeks.  Then a second resident, whom she also bonded with, was hospitalized as well.  On top of that, the house supervisor had to go on emergency leave to care for a sick relative.  Dorothie was not happy with her new life, and we were second guessing whether it was a good move in the first place. We were ready to wave the white flag, bring her back home, and call it good.

But, the caregivers and supervisor encouraged us to give it a chance.  They told us that if we let the house get back to normal, with everyone back home, Dorothie may become more comfortable with staying there. We agreed, crossed our fingers, prayed for a miracle, and let her stay.  Within a few days she seemed to begin to embrace her new life.  She still missed us, and would cry periodically when we left after visiting.  But she seemed much happier and settled.  And we were much more willing to hand over the responsibilities of her care. Even though I still struggled with the whole idea of “independent living” I could see the benefits it afforded Dorothie.  She became more social, and spent more time out in the community shopping, taking classes, going to parties.CuteDot (2)

By the one year mark my husband and I began planning to go on a nearly three week trip to France and England.  It had been a dream of ours, and we felt, for the first time, we could finally live as the empty nesters we’d become.  A couple of days before we departed, I visited Dot to prepare her as best as I could, not completely sure she understood that it would be a longer trip than we usually took. She asked if she could come with us. I had to tell her as best as I could that we would talk to her during our trip and send pictures to her. I also reassured her that Grandma and Aunt Juju would visit her and update her on our travels. I could see a vague disappointment in her eyes before she started to tell me something about one of the residents. I hoped all would be well while we were gone, listened to her “news” and left. It would be the last time I would ever see her alive.

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