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Showing posts with label compassion. Show all posts
Showing posts with label compassion. Show all posts

Saturday, June 9, 2012

The things I miss. The things I don't.

I miss looking up when I walk. 
I miss holding the beautiful children in my life.
I miss running.
I miss dancing.
I miss being spontaneous.
I miss playing.
I miss competing in sports.
I miss walking up stairs.
I miss being able to exit a room with defiance.
I miss wearing whatever I want.
I miss my pretty shoes.
I miss dreaming about being a mother.


I don't miss taking life for granted.
I don't miss putting things off for tomorrow.
I don't miss believing I am worthless.
I don't miss believing I am weak and feeble.
I don't miss lying about the sum of who I am.
I don't miss seeing the glass half empty.
I don't miss worrying about the small things. 
I don't miss living in a small world with defined possibilities.



Friday, May 4, 2012

Disneyland Part 3 - The Opportunity

There are five stages of grief include denial, anger, bargaining, depression and acceptance. I am fortunate to be able to get through these stages quicker as time goes on. It's an important part living life to the fullest. 


I supposed I should be happy I passed through the stages well before the end of the trip. Having FSH does make one resilient.


I like to think there is a sixth stage which is opportunity. I want to believe something positive can come out of every experience. 


When I look back on the trip, I can only see my nephew's smiling face, his infectious belly laugh and his passion for life. He inspires me every day and reminds me happiness is a simple formula and I am so grateful for that.


The experience made me feel like I made the right decision not trying to raise a child on my own at this stage of my FSH. I am glad I spent the money on this trip because it is a memory I will cherish forever. I am glad he adapted to my circumstances and found ways for us to share our own special things that weren't as physical, I think it will make him a more compassionate person. I am glad to have one more adventure to look back on.


Maybe this experience was like 'dipping a toe in the water' to get a taste of what the next stage of immobility would be like. One thing is for sure, I am getting a sleek, red scooter. If I am going to get one, I better look good in it.

Sunday, April 15, 2012

The Man in the Wheelchair

As the hockey world is glued to the playoffs, the company I worked for held a public viewing for those who wanted to watch their home team play.

We set up the event like a giant living room, some chairs and some sofas for people who won tickets through contests.

We often get people with disabilities attend our event because the nature of our company is inclusive and accessible. We have a policy to accommodate anyone with special needs and even if we didn't, the people at this company would do it anyway. I have seen managers give up their open parking spots for people who needed it.

I watched a man in a manual wheelchair, wheel his way to the front of the room, just behind the sofas. A few minutes later, he transferred himself from the chair to the sofa. No easy task when his legs weren't working.

Our event manager very reluctantly asked him if he had a VIP pass. He responded no. She said that he could sit there, unless a VIP came in, in which case he would have to move. He said he didn't know and would move anyway. Once our manager realized the sofa would remain unoccupied, she begged him to go back.

She came back to where I, and another co-worker, were watching to make sure the man was ok.
My co-worker commented on how some disabled people take advantage of situations and feel like they should not have to play by the same rules as everyone else, even in situations where they are capable. The manger was mortified, but didn't say anything. I said, "This man has a pretty tough life as it is, maybe you can give him a break."

It's not what I wanted to say, I wanted to scream. I wanted to shake her into compassion and reason. I wanted to tell her that her generation was far to unaware of the responsibility we have to each other in a society and that people who can help, should. I wanted to tell her people with disabilities are entitled to some modified rules.

But I didn't.

I couldn't.

Because I know this girl has compassion and a big heart. I know this because she knows that I have FSH and she researched it when she found out. She refuses to let me carry anything, strain myself and always gives up her seat for me whether I need it or not. She walks me up and down the stairs when we have a fire drill and has defended me with unequivocal conviction if anyone ever implied I was doing less than my share at work.

So where was this coming from?

I know there are some people who do take advantage of a disability or the fact they are elderly. There is a sense of unrestricted entitlement from them that frustrates people. I think it comes from their own frustration being someone with special needs feel. They hate asking for special treatment and don't like to feel different.

For me personally, I suffer walking the extra steps in the parking lot because I don't want to get a disabled decal for my car. I don't like to take special seating even though it would keep me from experiencing pain later. I don't even like to get on to a plane before the others because I feel like people with think I am taking advantage of an illness that doesn't make me look disabled.

For the most part, people are pretty legitimate when the ask for special treatment. I believe it is better to err on the side of believing them rather than questioning them and making them defend themselves.

The man ended up leaving after the first period. Not sure if he was embarrassed or frustrated since his team was losing.... badly.


Saturday, April 7, 2012

The "Whys"

You've read my posts about my nephew and my new niece, they joys of my life.

The first three years of my nephew's life have been amazing for me. I wish my condition didn't progress while he ages, but it is. I am able to do less and less with him. With my niece, I am doing even less. But I have enjoyed everything I have been able to do with them, and continue to try and create unique experiences for them that remind them of fun times with their auntie.

My nephew seems to be getting smarter and more active at a much higher rate than his years would indicate. I think I have mentioned he can knock me over with one of his tackles. At three years old, he plays hockey, lacrosse, baseball, gymnastics and he skates and swims. He has boundless energy and an amazing spirit.

He also has a soft soul and knows when things aren't quite right. In the last year, as my leg and core muscles have weakened more and more, we can't rough-house the way he likes. I can't carry him and I can't sit on the floor and play with him. I would say, 'we have to be gentle because auntie's muscles are broken.' He tries to be careful, but I sure hate spoiling his fun.

Now that he is becoming more articulate and perceptive, he asks, 'Why? Why are your muscles broken?' Every adult knows kids are full of 'whys'. Why this, why that... how do I tell a three old why my muscles are broken and why I can't fix it? Why I need a cane. Or why I need a wheelchair. I guess it is everyone's instinct to want to protect a child from the cruel lessons of life.

But I am hoping if I can explain my story in a way he will understand, it might make him more compassionate and considerate of people who are different than he is. Hopefully, it will make him understand we all have special skills and when God may take one thing, he gives you something else and it's important for all of us to try to find that something else. Not just in other people, but in ourselves.