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Kids are "supposed to" move on. Kids moving on is an experience that
resonates with so many parents. But when
people say it's supposed to happen, I often think "*I* wasn't 'supposed
to' get sick, but I did." I don't
walk around all the time feeling angry about getting sick; I think that
spending a lot of time thinking about what my life was "supposed to"
be like as my daughters grow up is pointless.
Focusing all the time on anger isn't healthy, and would be a waste of my
precious energy. But ignoring my anger completely
wouldn't be healthy either.
I DO get angry sometimes.
Angry that I got sick - a kind of sick that can be managed, but is
chronic. Angry that for various reasons,
I didn't get diagnosed and treated for my vision disorder until 1 1/2 years
after I'd gotten sick. Angry that
because of my invisible (yup, I often look totally fine) disorders, I have
significant limitations. Some would use
the word "disabled." People often
prefer to use words like "challenged," but sometimes the word
"challenged" isn't how I feel.
There are times when people jump in with well meaning advice,
which either doesn't work for me, or I'm simply not ready to hear. I want to have a sense of humor about my situation;
I know laughter can go a long, long way.
I want to have this transition figured out. I want to have all the answers, and if *I*
don't, then my therapists should. I'd
love it if there was a book out there titled "Coping with normal life
changes while living with vestibular and vision disorders," but it doesn't
exist.
Info about dealing with kids
moving on never takes into account special circumstances - that would be too
complicated. Each person's life, certainly
with these kinds of invisible disorders, is too individual; there's no
blueprint or manual for my experience.
So I have to write my own manual, as I live it. I knew this transition was coming, and yes,
I've given it thought. I've talked about
it with my psychologist. My problem is
that coming up with answers is very - well - challenging. I know I have to
experiment.
Once I've given my anger its' due, then I think "OK,
I DO need to figure this out, so what can I do?". In a previous piece I wrote about what is important
to me now, in more general terms. Now
thinking more specifically, I end up thinking about social stuff, reading, and
music.
Reading - I realized once I had trouble reading - which
involves a variety of skills - how many words swirl around us every day, in
this incredibly visual world. I've made
improvement, but I want more. There are
many pieces to reading. Besides home
therapy, I can take out and work with children's books from when my daughters
were young.
Social stuff - I need to stay connected to friends, not
just online (primarily through FB), but also in person via our congregation. I
didn't have that this summer, and I missed it.
Music - of course, there's music. Always music.
Ron needs to get our electronic piano plugged in so I can experiment
with that. I know I've gotten better at
musical "doodling" on my flute, but I want to play for longer, and I
want to play a page of sheet music. I
don't think that's beyond my grasp, if I'm prepared to put in the effort, and keep
trying, keep exploring.
I admire so many of the Olympians. I believe that I - and anyone living with
invisible disorders, whether you're doing rehab or not - can learn from them. Olympic
athletes have tremendous talent, but they ALSO work incredibly hard, and don't
allow setbacks to completely derail them.
If I can feel like I'm making progress 75% of the time, I'm
good. I'm going to have bad
stretches. I'm going to have to revisit
stuff, have to try again to come at something from a slightly different angle
to see what works. Sometimes in a VT or
FT session, Ann or Joyce has to dial something back a bit, come at something a
bit differently. I'll have days when
I'm super frustrated, or sad or angry, and that's OK. I can't let the bad days keep me
down, keep me from exploring and trying.
Just as I always tell my daughters, I've got to take it one day, one
step at a time. Worrying about what's
"supposed to" happen for me a month from now, or whatever future date
I pick, won't do me any good. I need to figure
things out, bit by bit, and then DO.
Best wishes to you as you work through these issues. Our children leaving home is difficult even when we are very healthy but having invisible disorders sure must magnify that. Friends have told me I need to visit my away children but they do not understand you have fear that flying or even long car rides could make your problems worse speaking balance mostly. My problem started only a little more than a year ago but I can see how a person has to learn to be chronically ill which is so difficult. Sounds like with your faith, talents and supportive family and medical help you are learning well. Blessings
ReplyDeleteBest wishes to you as you work through these issues. Our children leaving home is difficult even when we are very healthy but having invisible disorders sure must magnify that. Friends have told me I need to visit my away children but they do not understand you have fear that flying or even long car rides could make your problems worse speaking balance mostly. My problem started only a little more than a year ago but I can see how a person has to learn to be chronically ill which is so difficult. Sounds like with your faith, talents and supportive family and medical help you are learning well. Blessings
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