The Question?

“The Question Is Not What You Look At, But What You See.”

~Henry David Thoreau

Sometime progression for Parkinson’s {and other neurological diseases} is marked by how people see you {or your loved one} on a particular day.

We are asked  “How’s Don doing ? Last time I saw him he was struggling.”

or

We hear: “Hey, How’s Don? I saw him and he looked pretty good.”

Those living with Parkinson’s know, it can fluctuate minute by minute or hour by hour.

I find it necessary to not see our family or Don’s path through others eyes but how we want to remember our journey.

Summer 2015

Summer 2015 – Don,  Hadley (7) and  Libby Horton (12)

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Through A Different Window

~ Bless those who see life through a different window

and those who understand their view ~

Be who you want your children to be

Independence Day 2015

Children Of Parkinson’s

F. E. A. R.

F. E. A. R. 

Fear has two meanings –

Forget Everything And Run

OR

Face Everything And Rise

The Choice is yours.

For All Our Loved Ones With Parkinson’s  ~ We Chose To Rise

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Braving the fight for 9 solid years and counting! Don, Libby And Hadley Horton Spring 2015.

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.

Father’s Day Via Instagram

Instagram is one of those social media platforms that some would say we opened the door too early and allowed our 11-year-old to partake in.  Our concession to this method of communication comes with as many rules and regulations as Obamacare.  One of the caveats would of course be, to monitor her account.  Most of her posts are harmless selfies.

This Sunday when we checked we saw this.

Always be my no 1!

 

An image of her and her dad at a cotillion father – daughter dance earlier in the year.

The picture is precious to me for many reasons

but now, add her comments (minus the spelling errors)

and it is truly priceless!

Libby is at the age when we, as her parents, can be embarrassing for a host of reasons. However, when your dad is not like all the other dads, physically, it seems to stand out.  We are simply, more aware that his Parkinson’s Disease may add to her discomfort or questions from friends.

So, it was refreshing to see her proclaim “no madder” what, he’s her #1 man – for all to know.

 

Until there is a cure we will be the change.

Small Part Of The World

It’s the end of the school year for our little kindergartener.  Her class recently had a performance at school for the parents where they sang the song

I am a small part of the world.

 I remember our now 11-year-old singing the same thing a few years back and getting teary eyed.
Libby 2007

I have a small dream in my eyes. – Libby 2007

This year it touched me deeper. Was it because I was really listening this time? Or because I could see Hadley, not only singing the words but really believing what she was saying?
Hand In Hand Dreams Combined

I have a small voice ringing clear.

I saw that little body, that we love so much, singing about freedom, dreams – and coming together. For us, part of that dream means freedom from a disease. We are all a small part of the world and together we have nothing to fear.Take my hand.

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But if I stand by your side and you put your hand in mine, Together we can be so strong and bold. – Haddie 2014

I AM A SMALL PART OF THE WORLD by Sally K. Albrecht and Jay Althouse
I am a small part of the world.
I have a small hand which to hold.
But if I stand by your side and you put your hand in mine,
Together we can be so strong and bold.
I am a small part of the world.
I have a small dream in my eyes.
But if I tell you my dreams and if you add yours to mine,
Together we can reach up to the skies.
Hand in hand, dreams combine,
Voice with voice, together for all time.
Hand in hand, dreams combine,
Voice with voice, for all time.
I am a small part of the world.
I have a small voice ringing clear.
But if I sing out for freedom, and you add your voice to mine,
Together we have nothing left to fear.
Hand in hand, dreams combine,
Voice with voice, together for all time.
Hand in hand, dreams combine,
Voice with voice, for all time.
I am a small part of the world.  Take my hand.

 

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.

MJFF_WIP_MAR5_2

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

Russell Wilson’s Kindness Leaves A Mark

http://espn.go.com/espnw/news-commentary/article/10375235/espnw-touch-kindness-seattle-seahawks-quarterback-russell-wilson?ex_cid=2014_bnnr_ESPNWTDFY14_OutbrainD_aqsn

The title of the article …. Russell Wilson’s Kindness Leaves A Mark…. we should all ask~ what mark will we leave.  It’s easy to get consumed in our daily lives but I hope we all take time out to better the lives of others- on a super bowl level!

NEW YORK — One day in 2009, Russell Wilson found himself addressing hundreds of students at St. Timothy’s School in Raleigh, N.C.

We Can ALL do great things!

We Can ALL do great things!

The topic was bullying.

At the time, Wilson was the starting quarterback for NC State and a first-team All-ACC selection. Maura Horton, the wife of Wolfpack offensive line coach Don Horton, had invited Wilson to speak at St. Timothy’s because the couple’s daughter attended the school and a friend of the family who worked there wanted to be proactive in starting a dialogue about the harmful effects of bullying.

Courtesy of Maura Horton

Russell Wilson, with the Hortons’ daughters, was invited by Maura Horton to speak to schoolchildren about bullying, which he admitted he had been guilty of.

They all figured the amiable Wilson was the perfect guy to stand up and talk about doing the right thing. What they didn’t know was that he also had a confession to make.

Turns out, Wilson had been a bit of a bully himself.

It sounds hard to believe for anyone who has followed Wilson’s ascension to football’s biggest stage. On Sunday, the 5-foot-11, second-year pro will lead the Seattle Seahawks against future Hall of Famer Peyton Manning and the Denver Broncos in Super Bowl XLVIII.

But Maura Horton remembers watching all the kids that day at St. Timothy’s as they listened with rapt attention to the young man whose ease and openness allowed him to immediately connect with his audience.

“We were surprised to learn what he said,” Horton told espnW this week. “Russell doesn’t seem like someone who ever could have behaved that way. But because of his honesty, the kids were blown away by him.”

Wilson told the students that when he was younger he would sometimes be mean to his classmates on the playground because he thought that would make the “cool kids” like him more. It took a teacher pulling him aside one day for Wilson to realize there was nothing cool about taunting someone.

“You don’t want to act like that,” the teacher said, reminding Wilson that being good at sports wasn’t a free pass for bad behavior. The message: Sports are fleeting, but words and deeds are permanent.

“Your actions stay with you forever,” Wilson told the students, “so you want to make sure those actions are something you’re proud of in the future.”

The Horton family knows a thing or two about Wilson and meaningful actions. To them, he is a man whose awareness and sensitivity changed their lives.

About a year ago, Maura launched Magna Ready, a business inspired by an interaction between her husband and Wilson after NC State lost a road game during the 2009 season. Don Horton suffers from Parkinson’s disease, although he had not told anyone on the team back then. Because of media obligations, Wilson was one of the last players getting dressed that day, and he noticed that Horton was struggling to button his shirt. The team bus was waiting outside, so the sophomore quarterback stopped what he was doing and, without saying a word, buttoned his coach’s shirt.

When Don arrived home that night, he told his wife what had happened. He confessed his embarrassment and felt distraught that a layer of his independence had been stripped away. But an idea was born: magnetic buttons for dress shirts.

Maura Horton sent Wilson a handwritten thank-you note after hearing about his interaction with her husband. She says she believes Wilson’s awareness in the locker room was heightened by what was happening in his own life as he watched his father’s health decline. Harrison Wilson III died in June 2010 of complications from diabetes. Russell then transferred to Wisconsin after his junior season.

“Most players are focused on themselves after a loss,” Maura Horton said. “It was just a brief moment, but his dad was sick at the time, and I think Russell had a higher sense; he was just one of those guys who got it.”

Last summer, the Hortons and their two daughters visited Wilson at his passing academy in his hometown of Richmond, Va. At one point, the conversation turned to hopes and goals, and Wilson said he wants to win four Super Bowls. Unsure why he picked that number, Maura Horton went home and did a Google search, learning that if Wilson someday wins four titles he will tie Terry Bradshaw and Joe Montana as the quarterbacks with the most Super Bowl rings.

During Wednesday’s media availability in New Jersey, Wilson discussed his pursuit of greatness.

“If someone tells me no, I’m going to try to do the best I can to prove them wrong — more for myself than anyone else,” he said. “I’m a self-motivator. I believe that God has given me a sense of leadership to be able to motivate other people, but also myself. I want to be the best one day, and I’m not going to shy away from that. I’ve got a long ways to go, but I think, to be honest with you, God has put me here for a particular reason.”

The way the Hortons see it, Wilson’s legacy is already set.

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Just Being Is Fun

Sometimes we dwell on the changes we have undergone and are scared of what lies ahead but because of these two little ones we opt for a different path.

I never lose sight of the fact that just being is fun. ~ Katharine Hepburn

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Quote is by Katharine Hepburn – Many know her from her amazing breath of work on-screen.  Others know her for having Essential Tremor as well.

Essential Tremor is a neurological condition that causes a rhythmic trembling of the hands, head, voice, legs or trunk. Some even feel an internal shake. It is often confused with Parkinson’s disease although ET is eight times more common and affects an estimated 10 million Americans alone.

A few great resources for ET are  International Essential Tremor Foundation and Tremor Action Network

Another quote by Katharine Hepburn

“Now to squash a rumor. No, I don’t have Parkinson’s. I inherited my shaking head from my grandfather Hepburn. I discovered that whiskey helps stop the shaking. Problem is, if you’re not careful, it stops the rest of you too. My head just shakes, but I promise you, it ain’t gonna fall off!”.