As I grew older, and lot more appreciate of all my moms efforts; it amazed me all of the time and concern she gave me over the years. It was mom who spent countless hours at the hospital, at physical therapy and cheer leading me down the path of life. Now it was my turn.
I got the call early Sunday morning that mom had suffered a massive heart attack and was only alive because she was on a ventilator-the news came like a punch in the gut. I’m a believer in the glass is half full but this shook me to the core. When I walked in the hospital Sunday evening there was mom, in an induced coma struggling for her life, and there was nothing I could do. Now I was getting a flavor of what she had gone through so many years ago.
Mom was touch and go for several days. The hope was that she would regain enough strength so they could do a triple bypass surgery. Fortunately that came to be and all those hours of agonizing and feeling helpless came to pass. It made me even more appreciative of all that mom had gone through and all she had done for me on my road to recovery. I had the pleasure of spending time with her this Thanksgiving week, watching her slow but steady progress. It was a special Thanksgiving this year and it gave me added incentive to finish this book and dedicate it to my mother!
I attended a wedding reception for a buddy of mine on Valentines Day! I was approached by a woman who had a 16 year old daughter with cerebral palsy. Her daughter uses forearm crutches and the same crutch tips as myself. We had a great conversation about her daughter and the struggles she had fought through. Her mother was always on the outlook for new products and ideas that would help her daughter function at even a higher level.
One of the things her mom told me really struck a cord, she said:
My daughter just wants to blend in with the other kids
Boy, did that take me back to the days when I was sixteen years old-and the only kid in school on crutches. I just wanted to blend in!! I learned over the years, as she will, that we will never blend in. Guess what, that’s a good thing. We are unique and the sooner that we can embrace our uniqueness and celebrate it-the sooner we are truly free and giving ourselves permission to soar.
For me this was the hardest lesson to accept. Today, I’m a professional speaker and all of my speaker buddies spend thousands of dollars on their “brand” and conveying just that right image…I silently smile to myself and celebrate the fact that of all the professional speakers in the United States;I’m the dude on the fancy crutches that speaks on search engine optimization (SEO). People may not remember me but they remember those crutches and my “brand”.
I hope that all of you who may read read this will celebrate your uniqueness and your special brand-you are truly specail
Maryanne Williamson is much more eloquent than me:
“Your playing small does not serve the world. There is nothing enlightened about shrinking so that people won’t feel insecure around you. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in all of us. And when we let our own light shine, we unconsciously give other people permission to do the same.”
It was a spring morning in Grand Junction, Colorado. From my hospital bed I could see the sun and the first signs of Spring. Suddenly my day dreaming was interrupted by the clanging of the metal blinds against the door of my room. In burst Henry Swenson, grinning from ear to ear and the brightest twinkle in his eyes. Above his head he was carrying full leg braces and in his other hand he was carrying two of the smallest crutches I had ever seen. He stopped, looked at me and said: “Are you ready?”
I looked at Henry in stunned disbelief-I had been waiting for months to walk again. Now, the thought petrified me. There was no feeling in my legs, I could not move them-how exactly was I going to walk?
Henry looked at me and smiled and in his calming voice told me not to worry. He first helped me get into my leg braces. They were made of steel and took quite the effort to get in. Next came the crutches-they too were made out of steel. Henry got me out of bed with the help of several nurses. He locked my braces so they were straight on my legs and said let’s walk. The idea was for me to put the weight on my crutches and swing my legs out in front of me. My arms were so weak and they were shaking as my arms tried to lift all this weight.
The crutches and braces actually weighed more than me! I finally managed a “step” or two but the process made me totally exhausted.
I was totally exhausted but it was such a great experience to “walk” again. In my wildest imagination it did not occur to me how darn hard it was to “walk” again. My arms could not yet bear the weight and it was shocking how heavy those crutches and braces were. In spite of all of that I was the happiest six year old on the planet-brighter days were on the way!!
One morning I had a new vistor to see me. His name was John and he informed me that he was going to measure me for full leg braces and crutches. What a great day. I felt like I was making progress at break neck speed. Only a few weeks earlier I had moved to a wheelchair and now just the thought of crutches and braces made me smile from ear to ear. John said that it would take three to six weeks for the braces to be made. I had a new preoccupation and counted the days and weeks until he returned.
After months of me bugging the doctors about when could I go home-they finally said that once I was fitted for crutches and braces they were throwing me out-Oh Happy Days! That was the best news of my short life to date.
Shortly after being able to move my toes; my doctors decided it would be fine to start spending some time out of the bed and in a wheelchair. I was never so glad to get out of that stinking bed and into the wheelchair ! It was a very small move but for me it was liked the earth moved. I felt freedom and had a feeling that maybe things would continue my way.
Since I had the full use of my scrawny arms I was able to get around in the hospital by myself. It was a complete feeling of euphoria for this six year old! Needless to say, I was relentless in asking every doctor and every nurse if I could go outside just to smell the fresh air. Right after they said no, my next question was: “why can’t I go home?”
I saw this picture and it reminded me of a song that was done by Burton Cummings. It is called “Stand Tall” Some of my favorite lines are the following:
Stand tall, don’t you fall
For God’s sake don’t go and do something foolish
All you’re feeling right now is silly human pride
-Burton Cummings
There will be days when you and your disabled child will hit some low spots but I hope this inspires you to go forward and become the hero that you are!
Steve Mertz
Did you see the Saturday Night Live skit about Governor David Paterson? Paterson is legally blind and according to the New York Times, portrayed as disoriented and buffonlike. His office said the skit amounted to nothing more than cheap ridicule. The Governor is well know for making light of his disability-but not on this night.
Paterson’s indiscretions with cocaine and infidelity were open game on the Saturday Night Live skit. I happened to see the skit and personally felt it was over the top-and I love humor!
I enjoyed Paterson’s insights about humor and disabilities:
“I think people who have a good sense of humor do have in them a little bit of loneliness. When I was younger, I was certainly that way. So I think I used humor to entertain myself. That was my way of enjoying time, my way of finding the frivolity in situations.
When asked whether the skit offended him he offered another great insight:
“There is only one way that (disabled) people could have an unemployment rate that’s six time the national average-it’s attitude, and I’m afraid that the kind of third-grade depiction of individuals and the way they look and the way the move add to that negative environment.”
Good for you Governor Paterson! You now know why I feel humor is critical for children and we will talk more about employment in future posts! You can see CNN comments here as well as video of the skit. The Huffington Post has an article with many diverse opinions on the skit.
Steve Mertz
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If it were up to me a mandatory course on improv humor would be required for all children with disabilities. To parents I would offer this insight-the healing doesn’t start until the laughter begins, I’m serious. Humor is the universal language and it’s impossible to have a pity party and laugh at the same time.
Humor has been my favorite coping tool over the years. It’s diffused many an awkward situation and made many friends for me over the years. Combine humor with the ability to generate small talk and you have a powerful combination. Many hospitals may not think a lot of me wanting to set up an improv humor club but have you seen the look on the kids faces when the clowns make a visit to seriously ill children in the hospital?
I don’t mean to minimize the heartbreak that parents go through when a child incurs a disability but if your family can find and generate some humor along the way; I’m sure the journey for you will be easier.
The healing doesn’t start until the laughter begins. One day we will look back at this and laugh-Let’s start right now. Terry Paulson
I was very fortunate to have many family and friends come to see me in the hospital. Some of my visitors I didn’t even know. They would tell me they were friends of my Aunt Jennie or Aunt Mary sent me. I was one lucky kid to have such a caring group of individuals surrounding me during this time.
To the best of my recollection; I would say that I was shy and really just wanted to have all of this over-guess what, I doesn’t go away. After you have that wonderful support system around you; the real world awaits you! These are the folks who stare, ask very intrusive questions or just can’t help themselves-they want to learn more about you and your condition. What are you going to do to cope… Continue Reading »
I had a lot of time to think when I was in the hospital-this can be good and bad for a young child. I spent many hours trying to lift my paralyzed legs and move those infamous toes! Things were happening very quickly in my recovery so I never knew what tomorrow may bring. It’s funny what happens when you lose the use of part of your body.
I was so thankful that the paralysis that was high in my chest Continue Reading »