Archives for posts with tag: disabilities

We’ve all had bad things happen to us. We’ve faced challenges, been dealt hands we’d rather not play. But it’s play what you’ve got or play nothing at all. There’s really no sitting out.  It’s game on. What’s your next move? That depends on the player.

Some people choose to sit back and complain, maybe loudly, maybe quietly but the first card of the game is played, the Victim card.  “Woe is me. What did I do to deserve this?  I’m a good person!”

This determines the second card often chosen, the Blame card. “It’s not my fault!  If that hadn’t happened…  If she would have… But no one told me…”

The final card is thrown down with vigour. The Despair card. “There’s nothing I can do!  I’m too insignificant, I’m the victim after all!  Won’t someone else fix this?”

It’s understandable. Tough challenges, disappointments, well, they just aren’t fair, or fun.

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So while the reaction is understandable it doesn’t affect much benefit. Instead there’s more wallowing in self pity and sorrow. Still not experiencing much fun. Nothing gets better.

But then there is another kind of player. These players get knocked down, but they get up again.  Even if that means getting back up many times.

I Get Knocked Down Again by Chumbawumba

Their approach to the game is different. The first card they prefer to play is the Patience card. They get their bearings, see what they’re really up against, size up the situation.

The second card they select is Determination.  Strategies are considered and they proceed to carry out the plan adjusting as required along the way.

Weeble’s commercial circa 1970s

Their third and final card, played without fanfare, is Resilience. They turn into Weebles® if you remember the toy from the 1970’s. Their slogan was  “Weebles wobble but they don’t  fall down.”  Resilience means they keep at it and are set up to handle whatever their opponent has planned. They do what they need to to meet the challenge, to succeed.  They may wobble a bit but they won’t fall down, not now. They play the hand they’re dealt and more often than not they come out ahead. If they don’t, they adjust again.

I recently came across a young father who is busy playing the hand he and his family have been dealt with a smile. It’s a hand many of us may think about folding on but not Darren. Our first encounter was nothing really special. We are both members of Life Vest Inside and I saw a request come through from Darren that said his son was turning 10. If anyone was interested he’d appreciate some happy birthday wishes.  It seemed an easy way to spread a little kindness and cheer so I popped off a message.  His subsequent post of appreciation put his original request into context.

As it turns out Jayden has been faced with challenges since he was born with the heart condition Truncus Arteriosus, the same condition that killed his Aunt Karena, Darren’s younger sister, when she was only 17 weeks. Almost 20 years later medical advances in surgery allowed her nephew to survive, but it’s not an easy journey.

Jayden remained in hospital ICU for three and a half years, his mother seldom leaving his side for more than a few moments in all that time. He lives with global development delay and a high level of autism. Jayden has already endured 2 heart surgeries and will soon be undergoing his third. He has a tracheostomy to aid in breathing properly and since Jayden doesn’t have a very strong immune system once a month he spends a day in hospital for an immune booster.

Jayden’s conditions create a risk of choking meaning he must have an attendant 24/7.  Darren and Rhonda share the exhausting job of watching him around the clock. But all you have to do is listen to Darren talk about their son to know what a positive influence he has on his parents and others. Darren calls him a hero, super man, a survivor. With love and compassion and lots of time and dedication he proved sceptics wrong by learning to walk, he goes to school and he’s gaining skills. He is overcoming anxiety about eating from a spoon and he’s mastering his colours.  He has lots of challenges but he has a loving family to help him meet them.  That doesn’t make him less, maybe it actually makes him even more.

Jayden and Darren used with permission

Jayden and Darren
used with permission

“When my son wakes up in the morning and he smiles at me, that’s my payment.” Darren Kontista

Jayden eating

Darren knows first hand the struggles that Jayden faces. He himself was born with a heart condition called Tetralogy of Fallot and nearly died as a child.  Like his sister and his son, Darren required the assistance of a heart and lung bypass machine and has also endured two heart surgeries. He is expecting to undergo a third operation within six short years.

As I read Darren’s post about his sister and his son Jayden’s story I was left speechless. When I wrote my birthday greeting never in my wildest imaginings did I think that this family was going through so much every single day.

Darren and Rhonda could certainly choose to focus only on themselves, their challenges and no one would blame them. They could play the blame card, the victim card and the despair card without question. But that’s not what they’ve chosen to do. Instead Darren has undertaken a serious fund raising  campaign to procure a heart and lung machine for The Children’s Hospital at Westmead. The cost of the machine is $500,000. Darren and Jayden have set their sights on contributing $5,000. towards that. Checkout their fundraising page through Hearts for Life HERE.

They didn’t stop at a simple page though. Darren has a love of music and a talent to create it. He came upon the idea to have a fundraising event! November 1st a musical charity fundraiser Jayden’s Hearts for Life will take place. This family knows first hand just how important this life saving machine is.

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Recently Darren and his family moved to a new home. They were so happy to be settling in but for reasons out of their control they may be forced to pull up stakes once more before they’ve even had time to settle in and catch their breath. Something most of us would be angered by and this family is no different, especially given the extra challenges they face. Jayden doesn’t find change all that easy, being 24/7 caregivers takes planning, preparation and is exhausting without throwing in a full blown relocation again. But Darren puts it in perspective. At least some things are already packed! Or well, still packed.  And though they are tired Darren joked it was good his last surgery went so well and he feels strong like an ox. Looking on the bright side, even if the light is rather dim. That’s how these players play the game.

When I heard the news I felt tired and frustrated for them but my advice reflected Darren’s already positive attitude. Sometimes when you think you’ve arrived you discover it’s only a pit stop on the way to your true and even better destination. Deep breath, do a little dance, sing a little song and get ready to move on – to something fantastic, even if the road is a bit bumpy. Glad you’re looking on the bright side. “

When I thought about it I realized that it’s all the trials and tribulations, the challenges and pain that they’ve already experienced that are probably making them strong enough to face yet again, another unexpected and daunting challenge.

And that’s what this family is doing. Instead of wallowing in frustration and disappointment they’re playing their best cards. They are patient, determined and resilient.

And they’re already showing how that pays off.  Ticket sales for the upcoming fundraiser are selling well even before the the official advertising campaign kicked off.  If you want to show your support in some way click HERE! There are a lot of people who would really appreciate it.

Even though life can deal you a tough hand, Darren knows how to be grateful and see beautiful no matter how elusive it might seem.  He recently showed how well Jayden is doing at school and as a parent I know exactly how that thrill of success and pride feels.

Jayden learning at school

Kindness and gratitude help make the world a better place in my opinion, and Darren agrees.  Although generous himself in many ways he has been “blown away” by the support he’s received from their friends, whether it be financially, a helping hand or a listening ear.

Darren, Rhonda and Jayden exemplify  how to play the game of life everyday, with patience, determination, and resilience. Be kind, be grateful and you really can’t lose. With their dedication and determination we are certain they will have great success in helping so many people whose health and life will be greatly improved with the new heart and lung bypass machine.  Please show your support if you can.   A kind message, sharing their story, or if you are so inclined a financial contribution. All forms of support are appreciated.

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In memory of Karena

To hear more about Darren’s life and background in 8 minutes watch this video:

To see Life Vest Inside’s inspirational kindness video that started it all watch The Kindness Boomerang:

©2015 JFries/Rise Like Air

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Not long ago Matt Milstead pulled his nice BMW into a parking spot at his local YMCA and headed in to play a little basket ball.

Someone noticed that the spot was marked as handicapped and when Matt returned he found a note on his car.  Later on FB Matt posted a link that asked “Who would write that?” and posted a picture of the note. *

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Who would write that?  The short answer?  How about the person who is sick and tired of able bodied people taking parking spots meant for people who aren’t as able?

Except…. Wait for it….

Matt’s in a wheelchair. Did you guess that already?  Yeah, he was parked in a spot designated for people just like him.  Go figure.  Oops!   Could you hear the pin drop?  Thought so.

 “He who knows, does not speak.  He who speaks, does not know.” Lao Tzu

Now Matt is also married, and his wife Leslie understandably took a little bit of exception at the attitude shown by the person who wrote that note.  She posted her own letter to the author of the note.

“To the author of the note left on my husband’s car at the David D Hunting YMCA:

 I wanted to tell you a little bit about my husband since you took the time to write him in the parking lot last night.

 You were so close on the age, he’s actually 36, and he is a professional with a full time job. He is also a quadriplegic, which for him means that he can no longer move his legs or his fingers in either hand. He has no grip.

So, if you are willing to give him your functioning hands and legs for the rest of your life in exchange for his 6-year old BMW and handicapped parking pass, I’m sure he’d make that trade.

 As for ‘having the world by the ass’…you think he’s some arrogant jerk who wants to park his fancy car in a handicapped spot and strut into the YMCA in Grand Rapids, MI because he thinks he’s a bad ass? Why are you so confident that a handicapped person couldn’t be a hard worker who is successful and owns a nice vehicle?

 I would say he’s a good guy dealing with some tough circumstances that he refuses to be knocked down by. Thankfully, he just shakes his head at people like you who leave notes on his car. Trust me, you aren’t the first. Ignorance is everywhere.

 P.S. Look Matt Milstead up on Facebook. You’ll get to see lots of pictures of that wheelchair you had questions about.”

Now, as you probably figured out, this incident is getting a fair bit of attention.

People are responding with similar stories and frustrations.  Their disability is not obvious, or people make unwarranted assumptions about them because of some “thing”.  I mean really, who expects a quadriplegic to drive a 6 year old BMW… Anybody?  Now the question really is…. Why wouldn’t we?   There was a lot of discussion about just how insensitive we humans can be.  Point taken.  We really can be.

What struck me next was that most of the irked, were upset because of the assumptions made by the writer.  Assumptions and labels are dangerous things; even if they aren’t totally inaccurate, they are almost always at the least very limiting. The author of that note pretty much proved that.  I realized that we were all just as guilty of making assumptions; but about “who the idiot was” that would write such a thing.  We assumed it was some person with their head stuck up in a very dark, dank place so to speak.

It made me stop and ponder his question. What would cause a person to write that note?  To make those assumptions?  To be so quick to judge and to label someone they have obviously never seen let alone met?  And then to take the time and effort to write a note?

The first thing that sprang to mind was that maybe, just maybe… it was someone who really did want to see the wheelchair and assumed that anyone in a wheelchair that drove that car must be HOT!  Just maybe, it was an honest compliment, but alas, I may be grasping here as there was no phone number or other contact details.  One could always hope!

Next I had to admit it could have been me.  I mean I don’t make a habit of doing things like that, but on a day when I was really frustrated, overwhelmed, felt unappreciated or unheard, and I thought I saw a “real” injustice, I just might decide that I could make the world right by fixing this… By really giving this jerk a piece of my mind.  In these situations, I don’t think we’re really trying to “fix the world”.  It’s our excuse while we’re subconsciously trying to make ourselves feel better in the moment by believing that the person deserves to be as miserable as we feel.  That by making them feel guilty or ashamed we’ve somehow improved the world as we know it.  Um.  No.

 “You must stick to your conviction, but be ready to abandon your assumptions.” Denis Waitley

Maybe it was someone who was handicapped themselves and they really wanted that spot.  They assumed that some able bodied, thoughtless jerk had again shown they had no compassion and no idea what it was like to be in their position.  They may have even made their own silly assumptions about what a person with a disability might drive.

 “Your assumptions are your windows on the world.  Scrub them off every once in awhile, or the light won’t come in.”  Ala Alda

It could have been the loved one of a person with a disability who was tired of seeing all the challenges their loved one had to experience and this just seemed like the final straw and they just had to say something finally!   They just assumed that this BMW was not driven by anyone who might be disabled.  I know that since my father in law became wheelchair bound I see things in a totally different way than I did before.

 “Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned.”  Buddha

Maybe it was someone who simply wants to make the world a better place for people but hasn’t quite figured out how to do it in a kind and constructive way rather than being offensive and insensitive.

 “There is great force hidden in a gentle command.”  George Herbert

The point is, unless the person comes forward, we do not know their story any more than they knew Matt’s story.  To assume we do know their story is to risk being just as mistaken, judgmental and hurtful as they were.  My mom used to say “Two wrongs don’t make a right, they just make a bigger wrong.”  She also used to remind me that “If you have nothing nice to say about a person, don’t say anything at all”; “you can’t judge a book by it’s cover”; and “clean your own doorstep before you clean someone else’s.”

It doesn’t matter who wrote that note.  It has created dialogue, it has made people look at themselves and others in a new light.  It doesn’t matter if the author of the note has seen the story or “learned” anything from it.  It matters that I saw it.  It matters that I learned something.  For that I’m grateful.  How about you?

As Kelly Clarkson, and many others before her have said, “what doesn’t kill you makes you stronger”… well, at least usually.

 “We simply assume that the way we see things is the way they really are or the way they should be.  And our attitudes and behaviors grow out of these assumptions.” S. Covey

Truth:  We make assumptions about people and situations everyday.

Dare:  Identify and challenge your everyday assumptions.  See a whole new world come into focus.

* After publishing this blog I realized that Leslie’s letter was posted to FB first. After it gained attention, Matt posted a link to an article which was titled “Who Would Write That?”.

©J. Fries/Rise Like Air 2013

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