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!

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Children Thriving In The Face Of Adversity.

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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!

 

Caregiving is a Continuum

I came across an interview this morning that Cokie Roberts granted Today’s Caregiver. It struck a chord and caused introspection.  Here is the portion I have read and re-read.

Question:  You’ve said that caregiving is a continuum.  Can you explain what you mean by that?

Answer: “That is the message I always try to give young women (I do this at women’s college graduations all the time): first of all, don’t think that there is a period of your life when you’re a caregiver…When your children are small.  When your parents are old, whatever it is.  What women do is take care.  That’s what we do.  We do a lot of other stuff, too, but what our mission on this earth is, as far as I’m concerned (and I get a lot of argument on it, but that’s tough) is taking care.  Sometimes, it is taking care of the planet or the library or the cultural center or whatever it is.  But usually, even if that is what a woman’s focus is, she’s also taking care of human beings.  And it’s not necessarily just of your own children when they’re small or when they’re having problems along the way or of your own parents.” – Cokie Roberts

I appreciate visualizing a different view. It is one that I embrace and will reiterate.

Our mission on this earth is taking care.

The root of caregiving is compassion.  Our two compassionate children.

The root of caregiving is compassionate people, at every age.

You can read more of Cokie Roberts writings in We Are Our Mothers’ Daughters

http://www.amazon.com/We-Are-Our-Mothers-Daughters/dp/B000GG4LX0

My pleasure to introduce Francis Hulshof, a honored Veteran of the Year!

Francis Hulshof, Veteran of the Year Award, given by the First State Community Bank of Portageville, MO

Francis Hulshof, Veteran of the Year Award, given by the First State Community Bank of Portageville, MO

It has become my goal to change the face of limited mobility.  The only way I know how is to spotlight stories and pictures of others to help change the view.  Here is just one…..

The people we meet along the way are far more heroic and fascinating than ourselves.  I received an everyday order for two MagnaReady shirts.  The sizing varied, one medium and one large.  As old fashioned as it sounds, I picked up the phone to call the customer (Francis’s daughter Karen Masterson) to see if I could help and look who I met!

Below is a few segments from a tribute his son gave when receiving his distinguished honor.

Francis Hulshof  grew up and worked on a farm in Portageville Missouri.

 He was drafted into he army like a lot of other young men on Feb 14th, 1951

Local farmer of small stature and a big heart being recognized as the Veteran of the Year. Francis Hulshof was that man.

Local farmer of small stature and a big heart being recognized as the Veteran of the Year. Francis Hulshof was that man.

He was given the job for driving the jeep for Col. Ralph Melcher. Together they worked as Forward Observers, going to the front line to assess the situation, and return back to their camp with new information to process and use in offensive maneuvers.

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Francis Hulshof stands in front of his military memorabilia and plaques that
have been presented to him throughout the years. The two in his hands are
this years Veterans Recognition plaque, right hand, and a Thank You Certifi cate from the Republic of Korea. He received this earlier in the year during the 60th Anniversary of the signing of the Korean War Armistice

Some stories heard from veterans are very entertaining but then again serious. It was their way to remember certain stories and react to the magnitude of the situation. I remember one buddy said to the other, “Where were you when we were attacked at Pearl Harbor?” “I was up on the roof with my machine gun, shooting down every zero I could see.” While the other replied, “Oh no you weren’t, you were hiding down under the bunker with your head down, I saw ya.

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Francis Hulshof and Charlie Haubold chat with
each other at the Veterans Appreciation Breakfast

He was with the 8th field artillery of the 25th Infantry Division, commonly known as Tropic Lightning and he was stationed around Hill 1062 most of his deployment. Corporal Hulshof never said much about the battles.

 Today we thank you!

What an honor and privilege that Francis will be wearing  our  MagnaReady shirt!

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.

“Top Find” From The Stroke Network

Thank you Stroke Network – The Center For Stroke Recovery for selecting MagnaReady as a “Top Find”!

Top Find: Dressing After A Stroke

Dance Recital: Father – Daughter Dance

Hadley Channeling her Inner Great Gatsby  - Dance Recital

Hadley Channeling her Inner Great Gatsby – Dance Recital

It is a hectic time of year with lots of things culminating. Our two active girls, have participated in dance recitals for 8 years and counting now. This is Hadley’s 3rd recital.  She has performed her 2 1/2 minutes of chaos on “the big stage” with vigor and zero apprehension .  Libby, although now retired, lead the way, for 8 years. She danced her heart out- tap, ballet, jazz, lyrical. You name it (with the exclusion of hip hop) she has been formally trained.

Recital time always was a stress for us. Not because the girls needed continuous costume changes (for two years Libby had 7),  flawless make up (which I personally hate to see on my child), perfectly coiffed un-moveable hair, or the right shoes on at the right time.  For those of you that know me, know things like this don’t rattle me.  It was because there was a Father-Daughter dance as the grand finale of each performance. No big deal, a tear induced tender moment shared between father and daughter. Who’s not up for that?  A beautiful slow-moving, step on his toes, dance memory to a classic father – daughter song, sounds sweet!  That is unless Miss Charlene is your child’s dance instructor. You see Miss Charlene’s idea of a Father – Daughter dance always consisted of a fast 5 1/2 minute celebration of the classics.  To her, the “classics” consist of MC Hammer, Michael Jackson, Vanilla Ice and Earth Wind and Fire.  Her plan was for the child to actually show their “Move Like Jagger” abilities while the dads tried to keep up. Two years ago it was 40 plus year old grown men doing the Running Man in stretch polyester MC Hammer pants and long faux gold chains to complete the visual. I will spare you that picture! Every year, Miss Charlene wanted to top the last.

Libby and Don Father - Daughter Dance

Libby and Don Father – Daughter Dance

Normally I have a sense of humor about things, but asking a man with Parkinson’s disease, who innately would never qualify for a “Mirror Ball Trophy” to stand out was not a moment we relished.  At the end of the day, Don was willing and able but concerned he would embarrass his daughter. Strong words – reverse and repeat – he was worried he would embarrass his daughter because of something he has, NOT who he is.  His left hand just didn’t move – it hung close to his body and he no longer had full extension. I privately went to Miss Charlene and tried to explain our trepidation and why Don’s arm couldn’t do the Saturday Night Fever, Staying Alive move.  She wasn’t worried about it, so, we soldiered on.  In true Horton fashion, hours were spent learning, re-learning, reviewing film and rehearsing.  Libby and Don exhausted many more hours practicing than were required and in the end it only brought them closer.

Hadley Dance Recital 2012

Hadley Dance Recital 2012

I was thankful the auditorium was dark as night because Miss Charlene did evoke tears from me while the rest of the audience cheered.  At first, for the fact that we were different from every other family.  Honestly, sometimes it breaks my heart where the kids are concerned. We understood that this was supposed to be a special moment but I know for Libby and Don it was a little stressful for reasons her peers just couldn’t process.  As I looked at the stage it was hard not to notice that we stood out.  Don’s moves not in synch sometimes with his fellow cohorts but at some point my tears turned into extreme pride.  Libby and her dad doing it…. not letting anything stop them from participating.  I have to believe, later in life, when Libby reflects on these experiences, it will mean more to her than I am able to describe.  We DO stand out.  We WILL make a difference. We say it all the time, that we won’t let Parkinson’s define us and in these instances, both of them persevered together.

Libby and Don - Father - Daughter Dance

Libby and Don – Father – Daughter Dance

We will have to preserve that tender father – daughter slow dance for another time.

Reflection

Memorial Day is one of the nation’s most solemn holidays. May we all take more than a moment to reflect on those who have given their lives.

Reflection Pool

Hadley, Libby and The Edwards Girls Reflection

“That’s what it takes to be a hero, a little gem of innocence inside you that makes you want to believe that there still exists a right and wrong, that decency will somehow triumph in the end” Lise Hand

They Fought Together

They Fought Together

“True heroism is remarkably sober, very undramatic. It is not the urge to surpass all others at whatever cost, but the urge to serve others at whatever cost.” Arthur Ashe

Washington Monument

Washington Monument

The Beginning Of Letting Go

Spring is developing into wonderful anxiously awaited season, with great things in bloom.  My bloodshot eyes and continual runny nose can attest to its arrival.  Spring means different things to many.  In our life, it had always involved spring football with a culmination at the end a “spring game”.  This is the first time in 30 plus years -24 that I have been part of, that we haven’t attended one.  Knowing how important to Don this tradition is, we started planning. Even if from the sidelines, he would like to watch, this is food for his soul.  The plans were to voyage to Boston, a place we fondly called home, to watch the BC Eagles take the field under their new leadership.  Then the unfathomable traumatic events occurred and we thought better than to travel.  With the devastation that was besieged on this great community we started to place in prospective our simple feelings of wants and looked at the greater city and people’s needs.  Moments of prayers followed as we watched and listened to the events unfold, while being in constant contact with our friends that remain there and then we cheered at the conclusion. The Boston College spring game was cancelled, as it should be, but we witnessed an unplanned game, of good vs evil and goodness won!

Balloon Release

Mrs. Debby’s Balloon Release

Life changes all around us, whether we want or are open to it, or not.  My youngest daughters beloved preschool teacher passed away from breast cancer at a very early age.  How to explain the loss to a 5-year-old child, I thought, was going to be difficult. This was the second teacher / friend we had lost to cancer in a short period of time.   A collective group of mothers decided to have a balloon release ceremony to help the children let go physically of something, say a prayer, watch the balloon rise, disappear into a greater place and trust in life again. The kids held on securely to their balloons as they each said something special about Mrs. Debby and then, it was time to say goodbye.  As the release happened, I slowly looked around.  The adults with tears, myself included, but each child had a grin so wide it was hard not to feel their sense of trust, that in letting go, everything will be ok.

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It was with wonderment I watched Hadley.  Inspiring to me.  Helping me believe that there was a time when we / I were free to accept change.  We ALL make adjustments in life and have to accept new realities, whatever that may be and for us, now, that includes no spring football.  It’s not just a game but it’s been a way of life that we are letting go of.  I  believe it hurts Don to his core and for those of us who witness his inner sadness, it is difficult. There are different ways to experience loss and nothing can compare to the tragic way the people of Boston are grieving, but I do believe that living with a disease is its own form of loss.   As an adult I wish I had the ability to let go of something, truly release it, and not hold on, as my 5-year-old does. I am re-learning.