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Monday, April 30, 2012

Evan Potter

Evan and Monique's Inspiring story.
Monique Potter is the mother of 4 boys.  Her story below is the story of her youngest, Evan.

As you read her story, you'll see she has gone through, and continues to go through struggles.  
But you'll also see that Evan has been a huge inspiration to Monique, others and Evan has been exposed to generosity beyond what Monique thought existed.  Many have been touched by Evan's story, and we hope you're inspired as we were!

Evan Potter was diagnosed with Diplegic Infintile Cerebral Palsy at the age of three. At first, we thought he was just a little behind on doing things because he was 7 weeks premature. By the time he was 2, we noticed he wasn't quite doing things that he should be. He couldn't roll over, he couldn't hold his bottle, he was drooling quite a bit, when he crawled, he would drag his legs behind him, and he wasn't even trying to stand.  
When I first heard the diagnosis, the only thing I kept telling myself was that it was all my fault. Evan was 4 lbs. 12 oz. and I just knew that I was the most blessed person in the world. To look at such a little face that needed me so badly.
I don't smoke, I don't drink, I don't do drugs. I thought Evan's outcome had to do with my age because my other boys were all healthy. I was devastated. What kind of life is my son going to have in this world we live in today? Who's going to take care of him when I am gone? Why did God do this to us? How long is his life span? These were the thoughts going through my mind.
Evan and I face challenges at times. In 2009, he had his first surgery. The doctors cut the tendons in his groin area and also behind his ankles and stretched them to try and make his legs straight. The positive effects lasted only 5 months.   In 2010, he had a heart attack.  
Getting him in and out of my vehicle is a chore. There are no ramps where I live. The parking is very narrow so I struggle get him in the car properly.   have to use the restroom because he cannot use a public toilet.
We also have the cruelty of some kids that make fun of him. He is too little to understand that they are being mean, so he just smiles and tries to be friends. It hurts my feelings more than anything.
Our biggest challenge is his ability to walk. He has never taken a step on his own, and it looks like he never will. He tries so hard. We finally got his wheelchair and he's learning to control it on his own. He never gives up trying.

We have also had great, inspiring  things happen to us as well. Variety presented my son with a special needs bicycle. We are so very thankful that Evan will now get the chance to ride with other kids instead of feeling left out.
Guide dogs of the desert are working on helping to get Evan a service dog. Of course like any kid would be, he's really excited about this.
My son is my life. I could not imagine being without him. He is not only my hero, he is my inspiration. He has a smile that would melt any heart and always keeps a constant smile  on his face. Evan is the greatest blessing. This poem is my boy:
You weren't like other children and God was well aware,
You'd need a caring family, with love enough to share.
And so He sent you to us, and much to our surprise,
You haven't been a challenge, but a blessing in disguise.
Your winning smiles and laughter, the pleasures you impart,
... Far outweigh your special needs and melt the coldest heart.
We're proud that we were chosen to help you learn and grow.
The joy that you have brought us is more than you can know.
A precious gift from Heaven, a treasure from above,
A child who's taught us many things, But most of all - "Real Love".

Monday, April 23, 2012

Featured Article in the Arrow

This story was featured (edited version appeared in the magazine) regarding Taylor.

  It's not ALL of her story, but a good part of it.  Enjoy and BE INSPIRED!

Our daughter, Taylor, was born with “special needs”.  When she was first born, the pediatrician told us there “may” be something wrong and it appeared that she had “low muscle tone”. 
How could that be?  We were both only 24 years old.  My husband, David, was a health freak, not eating sugar, caffeine or alcohol and going to the gym 5 days a week.  I followed every step of the doctor’s advice.  I ate what I was supposed to, didn’t touch what I wasn’t supposed to and here we were, being told our baby could have challenges.
After exhaustive tests, we discovered that Taylor had a rare (only 60 known cases in the world) chromosome disorder and no one knew her future.
So we were thrust into a world we barely knew existed.  Taylor was constantly sick and in the hospital with pneumonia.  And when she wasn’t sick, she was in every physical and occupational therapy program available. 
Two happy go lucky college sweethearts who never faced a serious challenge now were forced to be ferocious advocates for their daughter,  questioning every medical “expert” and their latest attempt to help Taylor.  We were constantly told that we were doing the wrong thing, told our daughter could die and “did we really want that to happen?”  Most times, when we felt Taylor didn’t need something, we were right.  The few times the doctors did things we didn’t think she needed, she got very ill.
We were talked into a $15,000 wheelchair that Taylor was unable to use and we donated it shortly after purchasing it. We were convinced to give her a vaccine which landed her in the hospital for two weeks.
But through all the trials, tears and frustrations, we learned a lot about life and changed our views on a lot of things.
When Taylor was four, we started a charity called Bids for Kids. This was to benefit the Children’s Therapy Department at Mary Bridge Children’s hospital in Tacoma Washington.  This event has led to the raising of over $1 million dollars.  Even though we moved away in 2000, this event is still carried on by amazing group of women now The Jean Cunningham Orthopedic Guild. 
Over the years we have had the support of many friends and family. My best friend from college also a Pi Phi (Marylou Hill Ferry) has been with us along our journey.  Many of my sorority sisters live in different states but I continue to keep in touch and keep them informed of Taylor’s health.
Over the years our path has been made by Taylor, she shows us the way and we meet people because of her. She has been our teacher and it’s amazing the things you can learn from a child who can not walk or speak. But if you are ever so lucky to meet her or any child with special needs you will soon find out what I mean.
 We moved our family to California, although our business remains in Washington, for Taylor’s health and found that the best thing for her was dry air and sunshine (and it wasn’t too bad for the rest of the family either).
We learned that there are many families in similar or worse circumstances all over the country.  And there are many people and organizations that do wonderful things for this population.
I learned that I can administer shots, medicines, tube feedings and all the other techniques for taking care of Taylor that were completely foreign to me when she was born.
Taylor has taught us tremendous perspective.  So much that we found that my husband had a hidden talent, author!  He’s written a book called “Gaining Perspective, Lessons I’m learning from Taylor” (available on Amazon and for Kindle via his website
And we learned most of all, to trust our instincts when it comes to raising a daughter with special needs.  There is no handbook and each parent must forge their own path.  And to every parent that is given one of these very special people, you DO have the strength and the knowledge to do what’s right.  People often say we’re amazing for what we do with Taylor.  We do simply what needs to be done, and if faced with a similar situation, you could too.

Saturday, April 21, 2012

What's YOUR story?

We are looking for inspirational care giving stories from ALL care givers.
Do you want to share YOUR story with the world?
We'd love to hear it and post it right  the Care Giver Inspiration blog.
please email us at

Desert Smash

I was honored and humbled March 6th to be able to present a custom made Freedom Concepts bike to a worthy recipient, Evan Potter.
Desert Smash is a great tennis exhibition put on by Epic Sports and sponsored by K-Swiss.  Many of the top players show up....Quarry, Fish, Bryon and even #1 ranked Djokavic.

The proceeds benefit variety Club of the Desert.  One of our projects is the Freedom Concept bikes.  These are custom made to fit the individual and allows disabled children to ride and participate in something fun!
Evan was born with Cerebral Palsy.  He had a surgery in 2010 and a heart attack in 2011.  At age 6, he only weighs 38 pounds. 
But you've never seen someone happier than Evan when we cruised around with the bike on center court.  People were truly moved and even though there for the tennis, realized that there are families dealing with these kinds of challenges that need help.

A caregiver (Evan's mother, Monique) was treated to a round of applause and the attention of 3000 people.  She cares for Evan as a single parent and was overwhelmed by the outpouring of support!
A caregiver and her child get rewarded in the best way they can think possible.
What's YOUR Caregiver story?  Email me at:

or visit our website:

And share your comments!

A New Blog!

This is the brand new blog that was inspired by all the feedback from my first book: Gaining Perspective, Lessons I'm Learning from Taylor I've been overwhelmed with the stories of families and the care stories they've shared. Many have been moved by the way my wife Leslie and I have cared for our disabled daughter, our entire adult lives. If you have stories you'd like to see posted here, those that can inspire and encourage people, feel free to email me at:
 I hope you enjoy the blog!