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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It’s A Number Game

When you look at yourself as just “a number”, like the 1 million people living with Parkinson’s disease in the U.S..  It’s often hard to think you matter or more importantly, you can make a difference.

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The daunting figure –  3 out of 5 Americans will suffer from a nervous system disease, means that someone you know, love or possibly yourself will be in this statistic.

It’s when you start looking at specific numbers that are generated that you realize people do care and had the forethought to implement actions to bring relief.

A few numbers :

$70 Million dollars was given out by The Michael J Fox Foundation alone in 2013 to new and promising research.  They funded more research in 2013 than in any year prior!

Thanks to the amazing generosity of donors, 5.9 is the total dollars (in millions!) raised by Team Fox members alone in 2013 to help speed a cure for Parkinson’s disease.

Everyone can make a difference, even just one person.

The number my children display to help make a difference in their dads day is – 7.

She shoots.. she scores... a smile from her dad

She shoots.. she scores… a smile from her dad

You see, back in the day, his number, “lucky” number, was 70. Many a days were spent cloaked in a jersey, representing a team as #70.  That was during a time when your name was never on the back of the jersey because you were part of a team. As Don relays, no one name stood out, as a team you all stood together.  Much like our fight now!

The girls always want to cary a part of him with them.  So they try to show they care and want to carry on his strength by wearing a piece of a number that meant something to him.

When he watches them play sports, much like the chances of him getting Parkinson’s, the feeling he has is 1 in a million!

Lucky Number 7

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.

Happy Birthday!

When Don and I were dating, some 24 years ago, I would often sit in an office at his alma mater, Wittenberg, waiting for him to “finish one last thing” or make “just one more recruiting call”.  He valued his job but more than anything, he was honored to be called a Wittenberg Tiger. I knew then that I was second fiddle to his career and many young men.  As I sat there and tried to pass time, there was one 8 by 10 picture front and center on his desk that I stared at.  Three men he would pridefully call warriors with tremendous work ethic and mental toughness. Three men that battled day in and day out on the offensive line and in the academic classroom.  Three men in the trenches that helped secure an OAC Championship. Three leaders that showed incredible respect for each other and their teammates. Three people he never could forget.  Eric Horstman, Scott Bowen, Ken Bonner.

Wittenberg Tigers

Eric Horstman, Scott Bowen, Ken Bonner.

As Don move on to new challenges, offices and environments, this picture always remained on his desk.  Even as our life grew, it became surrounded by pictures of our girls and it continued to provide an instant reminder of his roots. When we relocated to Raleigh, Don brought the picture home.  I never asked why but I recall the day he shared the story of these three men he was honored to coach with our girls.  It immediately brought me back to the moment he spoke so highly of them to me.  Explaining that these men played football in the purest sense.  Just for the love of the game. You could feel his sincere admiration.

Then our home was destroyed by fire… a long story for another post…and all of our pictures were scorched.  Years were spent replacing and restoring us whole again but sorting through the charred memories was one of the most difficult things I had to do.  You have the memories stored in your mind but a picture silently recaptures your emotions and transcends you back to that moment in time.   Somethings, we had to accept, would never be replaced.

Don has never been someone who wanted to accumulate “things”.  He is not one that wants the latest toys or technology.  His birthday was coming up and when you love someone who has a progressive disease, the only gift you want to bestow on them is restored health.  Last I searched, I couldn’t find the gift of health.  Once you come to terms with the fact that you are not able to grant or find a cure,  you hope you can give the gift of a feeling.  The pleasurable sensation of what it feels like to not have the disease. A moment in time, a reprieve, a transcended cure of sorts.

Don had reconnected with Scott and Eric this fall.  They were kind enough to take time way from their families, travel and pay us a visit. Don was completely honored to share with them at this point in their lives and reminisce about the days of the past.  I mentioned the picture – not sure if they would even recall it.  Scott relayed that his dad had actually taken it and yes, he was still in possession of it.

So for Don’s birthday this week, with the help of Scott, the picture now proudly is displayed in our home again. A true homecoming of sorts. A momentary cure. A restored reminder of strength, courage and loyalty.  A piece of the past providing fortitude for the future.  Stories of three men that our girls will be able to hear, visualize and learn from.

With the pictures Scott sent, he enclosed a card with birthday wishes.  He signed it “Tiger Up”.

I explained to the girls that this is unwritten “man code”, and really means ~love~

Broad Shoulders

I ask not for a lighter burden, but for broader shoulders.

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I ask not for an easier path, but for stronger feet.

My Path

I ask not for weaker enemies, but a stronger me.

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Let life do with us what it wants, but let us be strong enough to handle it.

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Stamp And Send Love

On Facebook,  I saw a gentle reminder of how one of the smallest Christmas traditions could be a gift and help not only brighten someones day but spark change.

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Horton Christmas Card 2008

From the mom of a close friend of mine asking for something so simple.

It read:

“My daughter’s picture of the boys has me thinking of our annual “Breakfast with Santa” at North Ridge & how much Donnie enjoyed them. There is little joy now, so we do everything we can to spark a moment of clarity or a memory. Cards sometimes help! His address: Donnie Stancil, Room 320A, Crabtree Valley Rehab Center, 3830 Blue Ridge Rd, Raleigh 27612.

Her husband, Donnie, has Parkinson’s and additional health challenges. This is the first Christmas they won’t celebrate together in “their” home.

Not sure if it was the brutal honest comment of – there’s little joy now – or the HOPE that something we could do could help change a day, a minute or a connection but I applaud her plea and will happily oblige.

Hope that all will take a moment during this busy season to send love via a stamped card, especially to families that need a little extra tenderness!

Horton Christmas Card 2009

Horton Christmas Card 2009

From all the Horton’s much love and hope this holiday!

 

 

Until there is a cure we will be the change.

 

Make A Difference

I post the following personal letter not to highlight Don’s impact through his career but to help illuminate that anyone can make a difference.  Be kind – expect great things because the people you touch will in turn DO great things!

Serving his 7th deployment in Afghanistan

Serving His 7th Deployment In Afghanistan

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A Late Bloomer “Pee Wee” Turned American Hero

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Lessons Taught Through Sports Can Equal Positive Life Lessons

Thank you Colonel for your kind words they mean the world to our family but more importantly for your amazing service and dedication to our country!

 

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