>
> Driving was my first challenge. Thank goodness i live in the
> country! If I lived in the city I'm sure I would have caused an accident.
> I could not determine my foot pressure and had to relearn the gas and
brake
> pedals. Really scared myself a few times.
>
> The next "phase" was going out in public. Not work related, they
> were
> very supportive. I', talking about theaters, baseball parks, malls. I
was
> not confident unless my husbands' arm was under mine. That was a real
> learning process and it took awhile. To cross a parking lot alone was a
> major accomplishment. Now, I only shop when I feel really well. I'll
wait
> for the parking space close to the door(no I don't have a handicap
permit).
> Mail ordering is a major part of my current life-style.
>
Donna,
Your note sure brought back some memories! I remember being anxious
about driving, also, and especially going out to the grocery store alone.
Felt awkward all through the store and felt I was going to fall over if I
didn't hang on to the cart. I do much better now but still don't feel totally
secure all the time. Long before I even got to that point, though, my very
first excursion was to K-Mart to look for shoes. For some reason, the shoes I
had were flopping off my feet when the physical therapist had me walk around
the hall with the walker, and they couldn't let me go barefoot in the
hospital halls. I'm not sure why the shoes weren't working -- I assume
because my feet weren't moving normally. I've worn "flats" for years, so the
heel wasn't a problem. Anyway, that first K-Mart excursion also gave me my
first experience in a wheelchair except for the short distance from the
hospital to the car. I hadn't known you could get motion sickness from a
wheelchair! Maybe it was because I was a little nauseous those first couple
of weeks anyway, but I had to remind my husband to be careful about sudden
stops, starts, and swerves and turns. I thought, "No wonder babies in
strollers spit up!"
> One more significant area that I've had to deal with is our son.
> He was home 3 months after my onset. He's in the Marines and has
definetly
> proved he's a tough guy! But he really was disturbed by my situation.
> Luckily, for me, he was able to verbilize his fears and we discussed them
to
> death! I really am concerned what you all are doing with the "little
ones"
> that have to deal with such life altering situations. Although most
> children are more aware of disabilities then when I was a child, it must
be
> really frightening for a parent being disabled.
My children, all boys, were 11, 8, and almost 2 when TM struck me. They
were home when it happened, over a course of four or so hours progressing
from a numb hand to not being able to walk without hanging on (literally) to
my husband. They seemed fairly calm -- I don't know if they knew exactly
what was going on (we didn't either for that matter.) They rode with us up to
the emergency room and stayed til a friend came to pick them up. Talking with
my oldest son just today, he said he was really scared and was concerned that
I was going to die. My next oldest son said something similar. I know that
first week when I was in the hospital was rough on them. My husband brought
them up often, but they had to stay with others a lot. We don't have family
in the area, and we didn't know many of our neighbors, so a lot of folks from
church helped a lot. But that meant they were at different people's houses
all through the week A friend told me that once my youngest just out of the
blue started crying and crying. She just held him a while. Poor guy -- his
whole world and routine was disrupted! I was also disconcerted to hear of his
calling someone else "mama", but our pastor mentioned that that was probably
the only name he called an adult lady, since I'm a stay-at-home mom, so that
encouraged me. My middle son's Sunday School lesson just a few days after I
went in the hospital was on Romans 8:28: "All things work together for good
to them that love the Lord, to them who are the called according to His
purpose." He really got ahold of that message and was encouraging his older
brother with it -- it was so neat to see the Lord minister to him in that
way.
Once I got home, everyone seemed to be fine -- it didn't seem to bother
any of them that I was using a walker or anything. I was often confined to my
room at first because we have a split-level house and I couldn't get down the
stairs without my husband's support, and often the kids would come up and
talk. In fact, I remember that being a blessing -- I couldn't get dinner, do
housework, etc., so there was more time to just listen and talk and interact
with them individually. They had more responsibilities around the house, but
they didn't complain *too* much. :-) I was able to have physical therapy at
home for three months, and they often were right there watching and asking
questions. The therapist was a mom and didn't seem to mind and was great with
them. I think that was helpful to them rather than having me have to go out
for that -- helped them feel part of the process and understand what was
going on. Overall the disability part of it doesn't seem to bother them -- of
course, now I'm "functioning" almost normally although I have days when I'm
in pain or irritable because I'm distracted with my symptoms -- it might be a
different story if I were more disabled; I don't know. The only affect it has
on them directly is that I'm not always up to doing what they want or going
where they want when they want. But overall They seem satisfied with me in
whatever shape I am, as long as I'm home.:-)
I felt particularly sorry for my husband during those first weeks. He
used up his vacation days the first week. He wasn't allowed to use sick days
to take off for a family member, only for himself. So he was going to have to
make up the time he was missing or not get paid (which we couldn't afford).
His company was great about working with him. But he had the pressure of
that, the stress of my situation and all the unknowns, the stress of tending
to the kids, getting meals, getting laundry done, getting the kids to
babysitters sometimes so he could visit me alone (we lived 45 min. from the
hospital and the various people who watched the kids were scattered in all
directions, so he had a lot of running around), etc., etc. We were also into
our second year of homeschooling, so he also did that for about two weeks
(that actually was a plus, because he saw some of the things I dealt with and
we were able to discuss better ways to do things, plus he has an inventive,
creative mind and a wonderful sense of humor; the kids have some fond
memories of classes those weeks!) But we also had to wonder if we would have
to do something different for school if my condition didn't change, so there
was that pressure. People from church overloaded us with food, and one or two
came over to clean bathrooms and such, and lots of them watched the kids; and
a teen-age girl came over several afternoons to help with the kids and get
whatever I needed so my husband could get go some hours in at work. It was
stressful, and I wouldn't want to do it again, but with caring friends and
faith and prayer and humor, we survived (are surviving).
Barbara