Happy Birthday Cody!

It's this dude's birthday today. This guy trusts like a child, loves unconditionally, and is doing his part to make saints out of sinners. He has proved doctors, psychologists  and educators wrong, beat the odds more times than I care to remember, and has touched the heart of each person that is lucky enough to know him, while at the same time, tested every fiber of their patience. Gosh, I love him! 

Happy 34th Birthday Cody!

Meet Brent Johnson/ Adventurous Photographer Despite Only One Arm

A friend of mine posted some beautiful photos on her facebook page of Zion National Park and, upon following the link, I became acquainted with Brent Johnson Photography. It wasn't until I had looked through several albums that I realized Brent's missing an arm. Of course this intrigued me, so I asked Brent if I could do a blog post about him. After all, my blog is about dealing with disabilities and, from what I can see through pictures, this guy "deals" with a "disability" very well! 

Here are the questions I asked Brent, along with his answers. Prepare to be amazed. :)

Were you born without an arm or did you lose it later in life? I was born in Colorado Springs, Colorado, at Fort Carson Army Base. I was born without my left forearm. My arm did not develop from just below my elbow.  I still have full use of my elbow. I had to basically teach myself everything, because nobody knew how to teach me.

Did your parents/ family push you to do things or were they over-protective of you? My parents are the reason I am who I am today. They didn’t treat me any differently. They let me fail and make mistakes. They encouraged me, but didn’t do things for me. If I wanted to do anything, I had to figure it out myself.

How does driving a car work for you? When I was 14 years old, my dad began teaching me to drive. At 15, he told me if I wanted a driver’s license, I must learn to drive a stick shift first. I drove my first car, a 1959, 2 wheel drive Chevy pick-up, all through high school. I also drove a Yamaha TT600 Enduro motorcycle.

Was it harder to get a driver’s license having only one hand? When I got my license, it was an easy test. I drove around town, stopped for a soda, drove back to the DMV and told the employee I wanted a motorcycle license.  He said, “Can you ride a bike?” and laughed. Then he said, “Smile. Here’s your temporary. Your permit will be here in a couple of weeks.”

How do you handle shaking hands? I shake right hands. Most people do. I have never had to worry about that.

Have you ever dreamed that you had two hands? I have wondered what it would be like, but it’s never stopped me from doing anything, so I don’t worry about it.

How do you tie your shoes? The same way everyone else does, but it took me longer to learn. I was 9 years old, but I was so excited about it that I can still remember where it happened.

Have you always had a passion for photography?  I have always loved photography. My parents gave me a Canon T70 when I was in high school, but while I was working as a tour guide on the Colorado River, I took my camera on a trip and someone stole it.  I couldn’t afford to replace it, so I had to resort to point and shoot cameras, but I never let my passion go. I went to Montana to work with my friend, Greg Olmstead. He and his dad, Dave, were into photography and they would take me to Yellowstone National Park a lot. Dave had three different cameras and he would let me use one. They could see I loved taking pictures, so Greg and Dave bought me a Nikon camera with kit lens 18-55 mm, and a 55-300 mm lens for Christmas in 2011. The rest is history. My photography has exploded since then. Now I’m opening my own business. You can find me at...

 Brent Johnson Photography 

and  

Brent Johnson Artist Websites

In regards to your photography, did you have to adapt your equipment in any way or have you developed a technique that helps you?  I did not adapt my camera or equipment.  I use the camera lenses just like anyone else.  I have added an 85 mm for portraits and a sigma 150-500 mm for birding and wildlife, and am able to hand hold these without any trouble.

There’s a picture of you rowing a boat with gloves on. Can you explain how you do this? I love rafting and I wanted to row my own boat, just like everyone else.  I couldn’t hold an oar in my left arm, so I started experimenting. My first attempt was bolting a water ski glove to the oar. It worked great.  I could strap my arm in and pull/push just like everyone else. The only drawback was the glove would start wearing out and tear apart. Then I got an idea to use a strap. I took a yellow strap, cut it about 12 inches long and had it sewn together. I put a Velcro tab on both ends and one in the middle, then I took another piece of yellow strap, made a circle to fit my arm, and had it sewn to the top/middle of one end of the strap. I fastened the strap around the oar and took 3 hose clamps, one on each end and one in the middle, to secure it. This allows me to slide my arm in and out and row through the roughest of rapids, without worrying about losing my oar. It works just like a hand.  I have always had the mindset, “If there is a will, there is a way.” I just do things a little bit different than other people. That’s all.

What is one quality of yourself that you are proud of? I have a “to hell with everyone who looks at me as handicapped” attitude. I can do anything that anyone else can and I’ll probably do it better! My attitude started in 3rd grade, when I heard a coach trying to talk my parents out of letting me play basketball.  I later made the all-star team and played as starting point guard in high school. If there is something I want to do, I will figure out a way to do it. I’m not handicapped. Society puts that logo on individuals.  I tell people all the time, “The only handicap is your mind. If you think you can’t do it, you’re handicapping yourself."

Do you have a bucket list? If so, what are your top 3 things? I would love to go to Alaska and take pictures of wildlife there. That would be my ultimate dream! I want to visit Costa Rica and go fishing for Marlin and explore the tropics while taking pictures. I would like to go to the Daytona 500 in Daytona, Florida sometime. It’s nice to have dreams, but I can’t afford any of these things right now. It’s hard to get a good paying job missing an arm.

What is one thing about you that you wish everybody knew? I’m no different than anyone else. I’m not handicapped. I’m a normal human being and I don’t want to be treated any differently.

Thank you Brent, for allowing me and my readers to learn more about you. Not only are you talented, but your words, attitude, and photographs are encouraging and inspirational!

Happy Birthday Cody!

For thirty-two years Cody has made us laugh, cry, worry and keep a routine. Our family just would not be the same without him. 

We love you to pieces Cody. 

Because of you, we are a better family. 

Resource for Anyone with Health Conditions

Reading Momentum this morning, a magazine published by the Multiple Sclerosis Society, I came across a website that I had never heard of. It's called Caring Bridge, and is a place online where you can post health updates to keep family and friends informed. I scoped the website out and found myself wishing it would had been available back in 1994, when Don and I spent the better part of six months in and out of hospitals with Cody.

Those of you, who have family members with health issues, may want to take a look at Caring Bridge and see if it is a support that can be beneficial to you. Here is the link. Check it out!

http://www.caringbridge.org/about

Love Unconditionally...That's What Siblings Do

Source: 9gag.com via Chelsea on Pinterest

Guest Post/ Grandparenting a Child with Special Needs

I put my mother on the spot a couple of days ago and asked her to write a post for me. If you haven't already read 'How Do Grandparents of ASD Children Feel?', please click on the link and do so.


Before reading her words, however, I want you to know the first year of Cody's life was hard. Cody was born with multiple birth defects and we spent a great deal of time either in doctor's offices or in and out of hospitals. If it weren't for my mother, I could have never made it through that first year. She was by my side every step of the way. Years later, my mom even flew to Oregon twice within a six month period to take care of my younger children while Cody fought for his life in PICU.


From my point of view, grandparents play a significant role in raising a child with disabilities. My mother is an incredible person and I am happy that she wrote the following guest post:

Having Cody for a grandson has been an awesome experience. I can honestly say I would not want Cody to be any different than he is. He is truly a gift from heaven.

Everyone who has the opportunity to know Cody finds out what a great personality he has. I’m sure they will never forget him.

With that said, I have to say it has been hard at times to see my daughter, Cody’s mom, go through some very difficult times with Cody, most of them medical. I marvel at how amazingly strong she has become in facing these struggles.

Cody was my first grandchild. I didn’t have a preconceived idea what a grandchild should or shouldn’t be. I was never disappointed he was born different. My greatest worry has always been whether he is healthy or not.

I love Cody the same as all my grandchildren, we just have a different relationship and bond. I was privileged to be a big part of Cody’s first year. He loves his grandma, and grandma loves him!!

"The Tub Stinks."

Cody was getting his pajamas on after his bath tonight when he blurted out, "The tub stinks."

In a matter of seconds, I had the following thoughts go through my head: Cody doesn't have the greatest sense of smell due to Choanal Atresia, so what could he possibly be smelling? What would make the tub smell bad? Are the pipes getting stinky? Crap, we remodeled and put in new plumbing three years ago. I mean, what the hell? Do we even have any Drano in the house? Should I plug in my Scentsy? I just cleaned the bathroom this morning!

Anyway, you get the picture.

So, I asked Cody, "Does it really?" (I'm sure I was giving him a WTF look, but he's blind, so that's irrelevant.)

He replied, "Yes it does, a little bit."

"What does it smell like?" I asked.

Cody answered, "It smells like butt, because I washed my butt good."

Seriously, how does one even reply to that?

FYI, there is no odor. This is just one example of Cody's autistic brain at work. He was letting me know he did a good job washing up.

I May Never Be an Empty Nester

The following post was written by Rick Law, an attorney who deals with estate planning, medicaid assistance and disability law.

"My wife and I have almost reached the empty-nester stage. We look forward to that event with excitement, and a little anxiety too. We have raised four children, ranging in age from 32 to 17. After such a long run in parenting minors, it’s time to move on to that more senior stage referred to as being an empty-nester.

Not everyone becomes an empty-nester. And although we sometimes joke about the child who 'failed to launch' due to the inability to get a career, there’s another group of parents who will never know the joy of seeing their child be fully self-supporting. In my office it is not uncommon for me to sit across the table from an 83 year old parent who is still the primary caregiver for a child who is chronically disabled."
                                                                                                        
When I read the last sentence of this article, I cried.

I cried because I was led to believe by medical "professionals" that my son wouldn't live long.

I cried because somewhere in my heart I held hope that one day I would have a somewhat "normal" life. 

I cried because I don't want to continue sleeping with a baby monitor in case Cody has a seizure during the night.

I cried because my friends are all becoming the aforementioned "empty nesters" and I'm still dealing with a child who is completely dependent on me.   

I cried because Cody realized I was crying and, being the sweet spirit that he is, said "Are you doing okay? I hate it when you have a cold."

I cried because I feel guilty for thinking selfishly.


Tomorrow is Cody's 30th birthday. Tomorrow I will be cheerful and focus on the blessing Cody has been in my life.

But today, I cry.


To read Rick's article in its entirety, click on the following link...
83 Years Old and Never an Empty-Nester