Resilient ?

resilientI had to look the word resilient up in the dictionary.  Maybe I didn’t have a clear understanding of this adjective that is frequently used to describe children and how they respond to many of life’s challenges.  When talking honestly and openly about our children and Parkinson’s, we keep hearing “kids are resilient”.  As if to discharge those little bodies with large minds and their journey through life with a parent who has an illness.  Often when you state a worry about your child and how they are processing things, you are dismissed.

“They seem happy.”

“They will be fine.”

“Kids are resilient.”

If I had a dollar for every time I heard this……

Taken from Merriam-Websters Dictionary it reads – Resilient: Able to return to an original shape after being pulled, stretched, pressed, bent, etc..

I personally have a visceral response when I hear this uttered. My children will never “return to an original shape”.  Their lives have been completely altered.  Their hearts pulled and their minds stretched to limits that I truly wonder where the ceiling will be before breaking. Children are not prepared to see someone they love deeply suffer.

Our children are never going to “bounce back”, “rebound” or “recover”.  They will be forever changed from what they witness, see and feel and that’s OK!  It’s our firm belief that they will in turn make this world just a little better because not returning to their original form is pretty awesome too.

We choose to believe they are Thriving: to progress toward or realize a goal despite or because of circumstances

Because their blue print has changed forever, they will have strong voices, be leaders, show compassion, be teachers, and become the best little advocates one could ask for!

thrive

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Children Thriving In The Face Of Adversity.

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MagnaReady and Michael J. Fox Foundation Commitment

many ask me personally “What my home run is for our company” My answer is simple.  There isn’t one until there is a cure.  Therefore, for the month of April – Parkinson’s Awareness Month, we are donating a percentage of each purchase to the michael j. foundation to help fund a cure.  I truly belive we are all in this together!

 

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Below is the Blog that was posted on behalf of MagnaReady® and MJF and  teamFox

MagnaReady Supports Team Fox for Parkinson’s Awareness Month

Posted by  Maura Horton, April 02, 2014

MagnaReady Supports Team Fox for Parkinson's Awareness Month

Editor’s Note: With her portion of proceeds campaign launching this April, we asked Team Fox member and MagnaReady creator Maura Horton to tell us the story behind her innovative magnetic button down shirts.

“Mom, will you button my shirt?”

As a mother of two young children, this is a question that I have heard repeatedly over the last 10 years. When one child mastered the skill, the second began to verbalize the same basic need. Somewhere in the mix, I started hearing the same pleas from my husband Don. As the limited mobility effects of Parkinson’s began to set in, he was beginning to struggle with this simple task as well.

First, I started noticing that I was ready before Don; something that had never happened in our many years of marriage. I was the one now standing at the bottom of the stairs inquiring, “How much longer?”, pressing him, “We are going to be late!” During our morning routine, I would witness instinctive, honest-loving moments from our two girls, jumping up on our bed, using it as a ladder, to help their 6-foot-4 athletic father get ready for work by helping him to button his dress shirt.  I was naive, and thought that this challenge only happened for him when he was in the privacy of our home, not really giving thought to how Don got dressed when we weren’t around. He has Parkinson’s, but we rarely ever talked about the limitations. To admit to the struggle would mean acceptance.

As a college football coach, Don traveled quite a bit with a busy schedule in and out of locker rooms and hotels. The season brings early mornings and late nights, and honestly not a lot of time for small talk in between. However, on one particular night, after coming in from away game, he was anxious to tell me, “I had a hard day.” He repeated and elaborated, “I had a hard day. A player had to help me get dressed to catch the team plane.” Once he spoke of all the particulars I desperately wanted to help him. This was, after all, a man who never complained.

The Hortons with Seattle Seahawks quarterback Russell Wilson
The Horton family with Russell Wilson, Seattle Seahawks quarterback.

I realized in his words that despite the wins and losses on the field, here in this moment, my husband felt defeated. His dignity had been lost, and the simple fact that his body was betraying him was almost unbearable. For over twenty years, I had been on the sidelines watching Don be a leader, inspiring his players to be better players; to be better men. Mentally, I knew he could overcome the changes he was going through and could motivate himself to stay strong and move forward, but physically, I realized, that his battle with Parkinson’s was not going to be a fair fight, and I could see that my husband’s spirit was starting to deflate.

Getting dressed shouldn’t be stressful; living with a disability is hard enough. As I thought through how I could help, the epiphany came, and soon MagnaReady – Stress Free Shirting was born. If there is anything that I have learned from being a coach’s wife, perseverance prevails and something constructive comes from every defeat.

How you can join us this April for Parkinson’s Awareness month:

In our office hangs a sign that says – “Remember Why You Started”. Our mission is simple and MagnaReady is dedicated to giving back to the Parkinson’s community that we are proud to be a part of. So throughout the month of April, MagnaReady is committed to donating 10 percent of every purchase to the MJF Foundation during Parkinson’s Awareness Month.

TAGS: Caring for Someone with Parkinson’s Disease, Team Fox, Getting Involved

Until there is a cure we will be the change.

Dear Mr. President…my dad was fired for having Parkinson’s

A thing we have learned on this journey, is that a disease affects the whole family and to not listen and validate our children’s voices would be ill-advised.

Children’s words are often uncomplicated and simplistic.

Our eldest daughter came down the stairs a year ago, handed me a letter and declared “I need you to mail this.”

The White House Pennsylvania Avenue Washington, DC

The White House
Pennsylvania Avenue
Washington, DC

I hesitated…… my brain unable to process what was happening…… came to… and said yes.

I opened it.

"He dint do anything wrong."

“He dint do anything wrong.”

Read and re-read it.

Wept for her reality.

He Didn't Do Anything Wrong

He Didn’t Do Anything Wrong

Drove to the post office

and as I slipped it in the mail slot, I felt overwhelmed by her ability not only to articulate but to EXPECT change.

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Because as a family we stand together, united to speak out, proud and leaning forward for those with disabilities that aren’t treated fairly.  It’s NOT enough to just wish Don to get better but, as a unified group, we have to BE better and foster change.

Libby did receive a response back from The President.

I think she felt she was heard.

Her truth was hard to handle but the real truth of being fired because you have a disease is a blinding reality for too many people in our community.

We will affect change.

Keep Going!

Don’t Stop Trying Because You’ve Hit A Wall……DSC_0128Progress Is Progress No Matter How Small!

Never know where you'll end up if you don't keep going!

You never know where you’ll end up if you don’t keep going!

 

Different Views

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Often there is a struggle trying to communicate what the journey with a life changing diagnosis such as Parkinson’s is like…. to quantify or elucidate. We all experience it differently, through our own unique lens.

I know that we can not control our children’s outlook but only help them navigate.  I have learned however, to not try to define or categorize their concerns, questions or fears but to try to see the light through their ever shifting vantage point.

Some times it’s a close up and it is all you or they can see

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Close ups provide perspective.

and other times the lens is wider.

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Panoramic views provide hope.

Every journey is different.  Every moment, every decision, every prayer.

We all experience things in our own time and our own ways.

Through the pilgrimage you will truly LOVE the ones who may not be able to see all the stones on your path but can still visualize the panoramic view of your trek.

The Gift That Keeps Giving!

One of the greatest gifts that I am receiving this holiday is pictures and stories of your loved ones in their MagnaReady shirts.  Some of you I have had the pleasure of speaking with directly and I so enjoy putting a face with the name!

Please keep sending.

One face, one shirt at a time – we WILL change the way limited mobility or disability look. We are all in this together!

The pictures of your loved ones in their new shirts are making our year!!

Maura,
Here is a picture of my Dad–Richard Richardson– in his MagnaReady shirt.  It was a big hit and the quote of the day was:

                           “WOW–NO BUTTONS!”


Wish i had video taped it, it was SO well received!

Thanks again Maura!

Lucky

Lucky’s Real Tomatoes

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Always By My Side

“I could walk a mile in your shoes, but I already know they’re just as uncomfortable as mine. Let’s walk next to each other instead…”
― Lynda Meyers

Children Living With Parkinson's

Children Living With Parkinson’s

Human Factor with Sanjay Gupta – Don’s Words

We are honored to be a part of Sanjay Gupta‘s Human Factor series today. I have blogged many times.  They asked to hear the story through Don’s perspective.  Below are his words.

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Don Horton – Father, Coach, Son, Brother, Friend and Parkinson’s Fighter

When I was 48, I was working at Boston College, O-line University, in the pinnacle of my career and raising the family we had waited for so long to start, the last thing I was ready for was being told I had Parkinson’s.  There we were, being warned, that our lives were changing forever.  Maura didn’t blink an eye.  We were both fairly sure that the progression would preclude us.  When we spoke of the disease, we were always positive and stayed strong.  In hindsight, I realize how scared both of us silently were.

My daily activities didn’t change.  I worked, as all coaches do, extremely long days, but looming in the back of my mind was the disease and its’ progression.  To thwart the development I was to stay active, something I had always been; however, I started to notice small changes, and the inability on days to complete the simple tasks I had always done.  That would come and go.  It wasn’t consistent.  One day being able to change a light bulb and the next time I would try, my hands would fail me.  Afraid to admit the decline was beginning, I never mentioned it to Maura, but I know she was watching waiting to step in.

Maura started to notice my good days and bad days, and I would see her instinctively change our plans and schedule.  She and the kids would jump in and help me the same way that my players had each others’ backs on the field.  I fondly remember the loving moments of my two girls helping me in the morning button my shirt, though those moments were bittersweet.  Isn’t it me that is supposed to help them?  My newfound clumsiness was beginning to literally be the elephant in the room, and ironically, the locker room was where it decided to expose itself.  We had just lost a well fought game and had to catch the team plane.  I had spent all of my energy on the field, and there was nothing left my body would give me.  With my hands unable to steady themselves, I couldn’t button my shirt.  A task so simple, mastered at age 5, was now gone.  My weaknesses were completely exposed, and there I was unable to get dressed on my own.  Russell noticed.  He came over and helped me in silence, like Maura or the girls would do.  I didn’t really realize that players had watched this painful process for me.   Players were always a part of our family, but here I realized that now I was a part of theirs.  This moment was the turning point in my life and changed how I was going to address my very existing condition.

My pride was out the window.  The people that I was hoping to make a difference in their lives, were watching it unfold.  Would my players still respect me?  Would I still have a job?  All those fears that I had pushed to the back came flooding to the surface.  I was afraid to tell Maura, afraid that she would think less of me as her husband, less of me as a parent.  Instead they dug in and helped secure my dignity in their own ways.  All the years of preaching perseverance was paying off.

My disease continues to progress despite the fight we rally.  I cannot count the things I’ve lost.  That list is extensive but I prefer to take the lead from another legendary coach, Tom Landry – I’ve learned that something constructive comes from every defeat – and now, I am blessed with the things that I have gained.  My path may have changed course from where I started, but I am grateful that it has not hit a dead-end.

Parkinson’s doesn’t stop former NCSU Pack assistant coach Horton, from teaching life and football

We have been married for 20 years.  United in our goals of raising a compassionate family who is making a difference, not only on a football field.  We just happen to believe, people with disabilities can do amazing things!
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Don Horton has coached 15 offensive linemen who have played in the NFL. He was once named by ESPN.com as one of the two best offensive line coaches in the United States. He gained national prominence as a longtime assistant to former N.C. State coach Tom O’Brien.

Now he is an assistant coach at Ravenscroft School.

And he loves it.

“I got into coaching because I wanted to have an impact on young men,” Horton said recently, before going out into the rain for a Ravens practice. “I hope these guys that I’m coaching now will be better men because we worked together.”

Horton has Parkinson’s disease. He has had the chronic and progressive movement disorder for about seven years. Boxer Muhammad Ali and actor Michael J. Fox have Parkinson’s, which can cause trembling hands, uncontrollable tics, stiffness, unsteadiness in walking among other things. Symptoms can worsen over time. There is no cure, and the cause of the disorder is unknown.

The disease has affected Horton’s speech and his movement. Former N.C. State quarterback Russell Wilson once needed to help him button his shirt after a game.

But Parkinson’s has not affected his desire to help young people.

Mike Fagan, a 6-foot-2, 320-pound tackle at Ravenscroft, said he is a better person because of Horton.

“First thing, he is a remarkable coach,” Fagan said. “He has so much knowledge. Learning from him has been immensely profitable.

“And to know what he is going through and how he is handling it is inspiring. No matter what obstacles you come up against, you shouldn’t ever give up.”

Horton, who has coached for 34 years, can still motivate players.

Don Horton - Ravenscroft

“Oh yeah, when he wants you to hear something in practice he gets his point across,” Fagan said. “He can get pretty emotional.”

“It’s tougher in high school to have an impact because you don’t have the time,” said Horton, 55. “You don’t meet and watch film together like you do in college. But you’re still trying to do the same thing – teach them the basics, the techniques – and trying to have an impact on their life.”

Coaching at Ravenscroft has given him the opportunity to continue doing what he has wanted to do essentially his entire life. He resigned from coaching in 2012 but continued working in football operations at State until this spring when he said he was fired less than a month after brain surgery.

“Don always has wanted to be coaching kids,” said Maura Horton, his wife of 20 years. “I admire that. He found what he wanted to do and pursued that. He hasn’t changed.”

He moves more slowly now. Some physical changes seem to happen overnight. Other changes have been so gradual that he didn’t realize they were happening until he noticed a major change.

The incident with the shirt button inspired Maura Horton to develop clothing that can fasten using magnets, an example of how the family has worked to adapt to Horton’s condition.

“I take umbrage at the term resilience,” Maura Horton said. “The lives of our children (daughters who are 10 and 6) have been changed forever because of Parkinson’s. The lives of our children have changed for the better because they have seen how their father has faced this.”

Toughness

Horton wants to keep coaching football, a sport he considers the last bastion of toughness.

“You get knocked down, you get up,” he said. “You lose, but you don’t quit trying. You push yourself farther than you want to go, but you keep going. Football teaches toughness, physically and mentally.”

Horton was excited when Ravenscroft coach Ned Gonet offered him a job because he believes he still has things to offer young men.

“I hope he’ll have me back next year,” Horton said.

No worries there, Gonet said.

“We are honored to have such a man be associated with our program,” Gonet said. “Not only does he do a tremendous job with the kids, he has been great for our coaching staff.”

Horton started his coaching career as a graduate assistant at New Mexico State, Ohio State and Virginia before he got his first head coaching job in 1977 at Norfolk (Va.) Catholic. He led a program that had scored 18 points the previous season to a 4-6 record. He is still in touch with some of the players there.

Joe Sparksman, a Department of Corrections probation parole officer in Raleigh who was a runner and linebacker at Norfolk Catholic, said Horton inspired him years ago and inspires him today.

“He has been tough,” Sparksman said. “Just watching him handle everything thrown at him has been an inspiration. He was tough as a coach, but he was a coach who stressed that I was a student as well as an athlete. There was never any question that he wanted what was best for me.”

Wittenberg University, Horton’s alma mater, offered him a job as an assistant in 1978 and he remained in college coaching until arriving at Ravenscroft.

Horton said there has been little adjustment to teaching high school players after working for years with much bigger and stronger college players.

“It’s relative,” he said. “In college, those 6-5, 280 guys play against other 6-5, 280 guys. High school players, 6-3, 230, play against high school players about the same size. Most of the college players know they aren’t going to play beyond their senior year and so do the high school players. It’s about the same.”

And the lessons taught through athletics are the same, too.

Horton and his wife were talking about that just the other day.

Life is not always fair, but you have to keep getting up.