Total Pageviews

Showing posts with label disabilites. Show all posts
Showing posts with label disabilites. Show all posts

Wednesday, August 8, 2018

Cruel Irony


One of the cruelest ironies about caring for an adult child with special needs is that while they are getting bigger, parents are getting older and less able to do the heavy lifting; not to mention the chronic fatigue of having been “on duty”  day and night for decades.  It’s wearing on the body, mind, and emotions.

Recently I took my daughter to a new neurologist, as the one we’d been using no longer accepted our insurance.  The new doctor is in a large multistory office building directly across from our area's largest medical center and located in our county seat.  It’s not in a city, exactly, but for our fairly rural area it’s pretty close to being one.  Our area is also rather hilly as we are in a mountainous area.  Thus the building is built sort of into the backside of a hill.  There is a small fairly flat parking lot in the front where the main lobby is, and then there are 4 floors above that.  The remainder of the parking is in a series of 6 lots behind the building on both sides of the driveway going down the hill.  Two of those lots are in covered garage type parking and are by permit only.  They are for the doctors and office staff to use.  This day we were there was particularly sunny, hot and humid.  After circling the top lot, which was the only one with designated spaces for handicapped parking, to no avail, and circling the closest of the rear lots with no better success, I realized that I was going to have to use one of the furthest away lots.  I felt like crying in frustration as the last thing I felt like doing was pushing my daughter in her wheelchair up a couple of hills in the sun and heat. But I just took a deep breath and continued on.  It’s a heavy chair, and she’s an adult, so in total I was pushing about 250 pounds, and I really didn’t want to at all.  The other problem is that when I am out with her alone and there is not an available handicapped van access spot, I have to unload her in her chair before pulling into a spot, park her in between cars, and then pull into the spot.  If the building had security guards, I may have asked if I could unload her into the lobby and then go park but that was not the case.  There was also no valet parking as they have at the hospital. So, to be reasonably sure that when I returned to the van after the visit nobody would have parked in the spot next to us, blocking the ramp deploying without pulling halfway out of the spot before loading her in, I parked in the furthest away lot in the furthest corner.  As it happened, there was a wheelchair for hire bus parked in that area and the driver was relaxing in the shade of a tree nearby.  When I got out of my van to walk around and get my daughter out, he asked if I needed help.  I thought that was very nice and thanked him for the kind offer, but we were ok. It was a about a ¼ mile hike up hill to the rear of the building, and I was hurrying because I’d spent so much time trying to get parked that we were in danger of being late for our appointment.  I’m thankful that there was an elevator, and air conditioning once inside the building.  We were on time for our appointment, which went fairly well, and before long were on the return trek to our van.  The return walk was much easier as it was all downhill, and since I was parked in the shade, it wasn’t too awfully hot once we got in.  It’s kind of funny because that morning I’d been thinking that I would go for a walk after my daughter’s program bus picked her up but had decided it was too hot and opted not to. I ended up getting that walk in anyhow!  I’m lucky that it was not one of the heavy torrential downpour weather days that we’ve been having fairly regularly that day.  I don’t really know what I would have done in that case.  I do know one thing, the next time we have to visit that office I am taking someone with me so that I can either unload close to the building and then go park, or have help pushing up that hill.  I am not as strong as I once was, not that I’m feeble, but my back and knees were quite achy that night and I took it easy the following day so as not to aggravate my back problems.

I don’t often tell the stories of the times we struggle a bit with our daughter, and I don’t do it now to get sympathy or make me look laudable.  I do it simply to shine a light on situations that others may not be aware of.  I have no solutions to this problem to offer, except that perhaps this particular building could benefit from some wheelchair accessible spots in the closest of the rear lots where we were able to access the elevator.  Otherwise, offering to help someone like me is appreciated, even if we don’t accept the help; we always appreciate the gesture.


Friday, February 3, 2012

Poem & Reflection

FOR HILLARY



Some days

All that I can see

Is every DISability

The little things

You cannot do:

Pull my hair,

Untie my shoe,

Say my name,

Rock the chair,

Look up and say

“Sky is blue”,

Draw a picture

With big red trees,

Run up to me,

Hug my knees,

Pick a flower

And hold it up,

Spill your milk

Out of the cup,

Throw your lunch

Against the wall,

Or even roll

A purple ball.

But then I look upon your face,

Trusting me in every place,

And then it’s clear

Just how lovely and how dear

Having you to love can be

And for a heartbeat,

There’s…….ability.



I wrote this poem in the early 1990’s, most likely when Hillary was about 3 years old. She hasn’t changed much, she’s bigger, and we’re certain that she understands most of what’s said to her, but she has no way to really let us know. It’s ok, I’m used to it now, after all it’s been nearly 20 years. But every once in a while all I can see is what she is not able to do in relation to her peers. I don’t mean her peers who have no disability, but rather her peers who do have disabilities. Even among those peers, she is generally the most affected by an assortment of challenges. This is something I’ve been struggling with this week after spending last Sunday afternoon at a teen/adult Special Olympics bowling competition in which Hillary was competing.

This wasn’t my first time at this event; we were there last year as well. It’s one of the nice things about Hillary’s school program that they compete in the Special Olympics, and with a ball ramp and some assistance Hillary can participate as well. She used to participate in a league for children with disabilities until her bowling buddy and one of her first friends from infanthood, Francesca, passed away. We didn’t have the heart to find a new partner after that. Any how, when the opportunity presented itself we took advantage of it. Special Olympics is a happy time for the athletes and for the volunteers, they all seem to be enjoying themselves and the athletes are so proud of their accomplishments. Even as Hillary received a bronze medal, however, my stubborn heart refused to be lightened. My heart was hurting from the re-realization that among the minority that those with disabilities are, she is a minority. Most of the other participants can walk, and even of those who were also in wheelchairs, she was the only one who can’t talk, and to the casual observer seemed to be indifferent to those around her. I have to give the volunteers credit for at least trying to engage her, and the other participants tried to talk to her so it wasn’t that she was being ignored. Still my heart remained heavy.

One day I will be able to find the joy in this day. I will be able to see the happiness that escaped me then and eludes me now. First I must once again grieve the daughter as I dreamed her when she was born, and truly see the amazing one who is with me.