GO DAD….. GO!

Whats the saying….. apple ….. tree?

the apple does not fall far from the tree

  1. A child grows up to be similar to its parents, both in behavior and in physical characteristics.  [quotations ▼]

 

or in this case like father, like daughter

We spent the holidays slightly different this year ~ with a bad fall ~ a 7 day (partially paid through medicare)  all-inclusive trip to the hospital.

Don’s morning routine often consisted of placing quotes, reflections and hopes in the girls lunch boxes.

He sometimes references a treasured book someone once gave him because his thoughts aren’t always as clear

however, his optimism is.

Had ~ Be A Leader Love, Dad

Had ~
Be A Leader
Love, Dad

Our youngest thought just like her father….. On his first full day at the hospital she asked “Mom can you place this on dads lunch tray today?”

hadley dad letter 12-15

You can do anything you put your mind to – Your daughter Hadley ❤️

The lessons we teach are often non verbal. Love is constant and encouragement can  come from a sweet 8 year old child if they have witnessed it in their lifetime.

Children truly don’t think there isn’t anything their parents can’t do~ Hadley and her dads battle with Parkinson’s is no exception. I think deep down this coach is probably proudest that he has a coach-able kid… who might just one day, follow in his footsteps…. whether it’s on the field, court or in life.

a side note* “the p.s. is “you can draw muscle men if you want”. Something he does when she’s coloring with him….  You are never too old or too masculine to color with your kids ❤️

p.p.s. the oldest gets these too

Libby - Be Quick But Don't Be In A Hurry Love, Dad

Libby – Be Quick But Don’t Be In A Hurry
Love, Dad

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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

DSC_1107

Children Thriving In The Face Of Adversity.

MIT’s Open Style Lab – Mentorship

An amazing program that I am honored to be contributing to is MIT’s Open Style Lab, the brainchild of MIT grad Grace Teo and Brown University medical student Alice Tin.  A strategic platform that focuses on new wearable technology for those with limited mobility.

Helping bring visionary designs that aid people with limited mobility and dexterity to production is the ultimate goal.  What I absolutely endear about this program is that it brings together 3 areas of focus for 1 greater goal.  To unify the occupational, engineering and textile world under one umbrella in efforts to create a level platform has long been overdue.  I am proud to be a part of the process.

Below is an article published for Boston Magazine.  I believe it sums up the program nicely.  For more information, amazing stories and updates, check out Open Style Lab.

“The greater need besides being able to [dress] independently is being able to look like everyone else, or look how you want to look,” Horton says. “Instead of standing out because of your disability, that’s one way that we should be able to all stand on a level platform.”

http://www.bostonmagazine.com/health/blog/2014/08/04/mit-open-style-lab/

 

Students Create Adaptive Clothing at MIT Open Style Lab

Engineering, design, and occupational therapy majors team up to design apparel for people with disabilities.

Barbara and her Open Design Lab team. Photo provided.

After a series of fractures left her in unbearable pain, Barbara Harrison elected to have below-the-knee amputation. While she knew the surgery would change her life, she wasn’t prepared for the small changes that nobody thinks about—like how clothes will fit.

Harrison, a Winthrop resident, now has a prosthetic leg, and the process of getting dressed in the morning is more difficult. That’s why a team of college students at Massachusetts Institute of Technology (MIT) are working together to design a new kind of pant that can be functional for those with disabilities.

Creating apparel that is both functional and aesthetically-pleasing is the whole idea behind the MIT Open Style Lab (OSL), a new 10-week summer program where students design clothing solutions for people with physical disabilities. Funded by university grants and corporate sponsors, the program is the brainchild of MIT grad Grace Teo and Brown University medical student Alice Tin.

“Clothing is social capital. Often [clothing for people with disabilities] falls under the functional end of the spectrum and doesn’t look cool or stylish,” Teo says. “What we’ve noticed is even if you have the best intentions, the best product, the most helpful technology, if it doesn’t look great, people don’t want to wear it.”

OSL fellow Alex Peacock's sketch of a glove that can be worn by his client who has fisted hands due to a spinal cord injury. Photo by Kira Bender.

Hoping to change this trend, Teo and Tin have recruited 24 engineering, design, and occupational therapy students to this summer’s inaugural OSL program. The students work in teams of three, with each team assigned to one of the program’s eight clients—all of whom, like Harrison, have a physical disability. In the early weeks of the program, which began in June, teams met with their clients to identify specific clothing challenges. Now, students are focused on creating prototypes of their designs under the guidance of expert mentors.

Maura Horton, a professional designer, is one of them. Though her background is in designing clothing for children, Horton’s recent efforts have focused elsewhere. She is the creative force behind MagnaReady, a line of dress shirts for seniors and people with limited mobility that uses magnets instead of traditional buttons. She designed the shirts after her husband, then a 48-year-old college football coach, was diagnosed with Parkinson’s Disease—a debilitating condition which left him unable to dress himself.

“When my husband was first diagnosed , I looked at the [adaptive clothing] choices that were available online. It frightened me,” Horton says. “What I was seeing online was not something I wanted to replicate with my family. They were not quality choices.”

Horton says one of the most important aspects of her “magnet-infused” shirt design, which her OSL students use for inspiration, is that it looks like any other dress shirt available in stores. Unlike other adaptive clothing, it does not differ in appearance from traditional clothing in an obvious way.

“The greater need besides being able to [dress] independently is being able to look like everyone else, or look how you want to look,” Horton says. “Instead of standing out because of your disability, that’s one way that we should be able to all stand on a level platform.”

As founders of the OSL program, Teo and Tin share Horton’s sensibility. The ultimate goal of the program, they say, is to make “the distribution of clothing more accessible.”

“Everyone has a range of clothing to work with because [clothing is] a channel for self expression. For populations with disabilities, that vocabulary is limited,” Tin says. “What we’re doing with Open Style Lab is to reintroduce diversity into their wardrobe.”

Student teams will reveal their final clothing prototypes at a public presentation at MIT on August 16 from 3:30 p.m to 5 p.m. The prototypes will also be presented during weekends in October at Boston’s Museum of Science. For more information, visit openstylelab.com

Grace Teo and Alice Tin try on goggles that mimic eye diseases at the MIT AgeLab. Photo by Laura Hanson.

Dad Fell…….Again.

Falling is a reality for many Parkinson’s sufferers.  Balance and gait become impacted in many ways.  We will never become accustomed to the spills of a 6 foot 4 man who was once so physically strong.  Don’s falls are simply scary for him, as well as us. Sometimes we see the warning signs, but lately, more often than not, we just hear the thunderous crash followed by silence and then feet running from all directions to see what we will find.

It’s those unexpected findings that has our 6-year-old feeling uneasy.

Pre Fall Smiles!

Pre Fall Smiles!

Hadley knew at the age of 3 how to dial 911 and what our address is.  Not because these were preschool bench marks but because the likelihood of her needing to use this information was high.  How many other families can say they have emergent plans for “what if dad falls”?  Most families barely have plans in place in the event of a fire.

Often when I leave the house and Hadley is alone with her dad, a definite uncertainty starts to boil to the surface.  It’s as if I can see her heartbeat starting to race and that little brave soul kicking into gear.  She wants to be courageous but the unknown is scary.  So she begins asking very specific questions.

What time are you coming home?

– what she’s really asking is: How long do I have to be fearless for?

Will you be able to answer your phone?

– what she’s really asking is: Will you be there if I need help?

Can you call me and tell me when you are headed back?

– what she’s really asking is: Can you tell me when I can stop worrying?

Do I call 911 if I can’t get you?

– what she’s really asking is:  Is it ok if I can’t do it all by myself?

Leaving Hadley feeling comfortable and confident is getting harder and harder to do.  Her internal sense is one I have to listen intently to.  I don’t want to deprive her however, of that ever important one on one time with her dad.  Oh how I wish that while I was gone her only fret was about what Barbie is wearing and making a huge play dough mess together.

A day of face painting and an falls.

A day of face painting and falls.

We are getting really good at communicating with each other, another great advantage of modern technology. Below is a video Hadley texted me, after Don fell while I was out.  Hours earlier we were all enjoying a neighborhood fair, attempting to have a normal Saturday.  I had just run to do the mom thing – grocery shopping.  I was only going to be gone for a quick moment.  You can see the remnants of face paint on her sweet innocent cheeks in the video below.

watch here http://youtu.be/MtYwyZJ5UIo

Her response was calm and positive but that fear of “what if” will not leave her.

A fall can happen any moment for us.  Parkinson’s isn’t thinking not now, not today or wait until mom gets home. Falling is rapidly loosing control.  I believe for families of Parkinson’s sufferers, we all feel that lack of control whether we hit the ground physically or emotionally.

3 Cheers For A Cure!

Don and I are celebrating our 21st year of marriage.

Not a typo.

Really, it’s been 21 years.

We’ve never been a couple to exchange extravagant gifts.

A few years back I received one gift that I will always cherish.

You see, my mom never throws anything away.  Not a hoarder but a complete sentimentalist.  Unbeknownst to me she provided Don with a piece of my past that she thought he “might like”.  A throw back Thursday treasure.  A cheerleading picture (pre photoshop days!).

Always Your Cheerleader

Always Your Cheerleader

 

Don, in turn, took my brace faced picture, purchased a side by side frame and inserted his playing days football picture.

 

Don - Wittenburg Tiger Days

Don – Wittenburg Tiger Days

Completely sweet.

Attached a note that read …….

We are quite the pair. Meant to be. Always by my side. Love – Don

Couldn’t agree more. I can’t find my pom poms or do a herkie any longer but I am cheering him (and many others)  on now, in more ways than one.

B E A T  P A R K I N S O N ‘ S ! 

Until there is a cure we will be the change.

 

 

 

 

 

 

Oh What A Night!

We traveled as a family for the first time to the wonderful city of Seattle.  To attend the American Parkinson’s Disease Association Magic Of Hope Gala. Don was being honored.   What an incredible time for us to come together and share our story, journey and hopes for the future.

The Magic of Hope Gala 2014 - American Parkinsons Association

The Magic of Hope Gala American Parkinson’s Association

We were lucky to meet many warriors of the disease who are valiantly fighting as well. We were happy to help raise awareness and money for programs and research that we believe will help those afflicted.
Copyright 2014 Garet Munger

Copyright 2014 Garet Munger

We were humbled that Russell Wilson would take a moment to help support our cause by speaking and donating.

Attached is a clip from his tribute to Don.

I know Don was honored to hear Russell’s words but honestly, upon reflection we both agreed that he had given a gift to the Parkinson’s community and our family – especially, our girls.

As the disease progresses and the father they once knew is harder and harder to see, they will have this small token from Russell.

Helping them remember what a difference Don made in his career as a coach and human being.

Once again, thank you Russell.
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.

DSC_0053

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.

 

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!

 

Image

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.

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!

 

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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