~ Bless those who see life through a different window
and those who understand their view ~
Children Of Parkinson’s
~ Bless those who see life through a different window
and those who understand their view ~
Children Of Parkinson’s
I 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!
I participated in a radio show for the National Parkinson’s Foundation South Palm Beach Chapter. In closing the host, Jeff Dowd, asked – “What is one piece of advise you would want listeners to take away from our time today?”
My answer was simple.
I said and truly believe – “I hope everyone would be open to listen. Listen to your loved ones. Hear what they are saying verbally but especially non. It’s often what goes unsaid that stays in our hearts longer.”
You can only affect change by listening. Change in perception, change in environment, change for the cause and most importantly change for their quality of life until there is a cure.
I’ve seen a glance down when something is difficult, feelings of I use to be able to do this bubbling up.
We hear comments by others about his progression while he is standing next to us, as if his hearing is impaired and he isn’t able to understand what is being said about him.
We notice looks and hear sighs when someone doesn’t have patience with his slower pace, as if to say you don’t matter.
We listen as he has a conversation with someone and the person he’s speaking with nods and laughs, as if they understood what he was saying but we know, they have no idea.
All things we take in and process. All things attempting to create defeat. Defeat of a soul. Defeat of spirit. Defeat of your accomplishments. Defeat of human life.
You can’t let that happen because the disease takes away enough.
We have accepted that we can’t completely win our battle against Parkinson’s, only keep it at bay for as long as possible, but, we can defeat ignorance.
So listen, and when you see a shift in you loved ones attitude, rise to the occasion and when you hear ignorance, challenge it.
Until there is a cure we will be the change.
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.
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.
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!
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.
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~
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!!
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:
Wish i had video taped it, it was SO well received!
Thanks again Maura!
Lucky’s Real Tomatoes
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.
From the mom of a close friend of mine asking for something so simple.
“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!
From all the Horton’s much love and hope this holiday!
Until there is a cure we will be the change.
An unwanted and unsolicited dialog has been happening at our home. Our 10 1/2 year old openly questioning her belief in Santa. Although, I would assume she had started having doubts last year, she was kind enough on my old soul to keep her curiosity silent.
That is until now.
The conversation started….
“Mom, so-in-so’s mom told her there is no such thing as Santa.” My initial quick response, I shouldn’t repeat. It caught me off guard and my guttural sense to preserve our children’s youth and naivety kicked in. The next day….again…..”Mom, so-in-so said her mom and dad let them pick what they want off their list. She has NO Santa gift.” I was a tad more prepared and responded gentler with; “Well, that’s great for their family but WE believe.” The last straw……. “Mom, seriously, I can handle it. I know the truth. Everyone else’s mom is honest with them.” I took a deep breath, turned and looked in those deep blue eyes to try and touch her soul and stated what I truly hope my family will always believe.
I said, “Libby, if you don’t believe in Christmas or in the existence of St. Nick, then it makes it difficult to trust in magic and miracles. In turn, it makes it unfathomable to believe that there will ever be a cure for Parkinson’s or hope for your dad. We have to be able to have confidence in things we don’t see. You just have to believe.”
Not that I expect her to fancy in a jolly old soul coming down the chimney forever but I do want her to trust in the true spirit of Christmas.
PS….. Damn you moms that think it’s ok to spread your disbelief. Sometimes that’s all we have and need.
Today was the day. A BIG day. One that coaches plan for, fans live for and here at NCSU, athletic directors fire for . The biggest rivalry opponent in your house- on your turf – ready to accept defeat. Today NC State (Wolfpack) and UNC (Tar Heels) would face each other in a contentious in state rivalry that has turned into a controversial “battle of the state. For those of you who are from out of the area, it is similar to the OSU vs Michigan, Alabama vs Auburn or Florida State – Florida feud. Basically, it’s a game where at the end of 60 minutes winners have bragging rights for 364 days and that is the equivalent to gold around here.
But for us, the first time in many years, we were not apart of it.
No, today as a family, we took part in a much bigger, and in my humble opinion, a more important fight. One that is on the national level. The fight for a cure to Parkinson’s. Moving Day is a walk hosted by the National Parkinson’s Foundation. I think it a was a little piece of divine intervention for our family that it was held on the same day. I couldn’t help but draw a few comparisons.
There was still team vs team donning colors and a uniform.
War paint and tattoos could be spotted everywhere.
The cheerleaders were motivational and spirited!
The proverbial crazy fan spotted!
And at the end of the day we left feeling victorious because we ALL had won! Last we heard the tally, funds raised to help the cause was well over 100,000.
“All we were worried about was one, and it was this one,” Fedora said on being 2-0 against NC State. We couldn’t agree more! All we are worried about now is one too, but it’s Parkinson’s and has stakes higher than any rivalry game out there – because this is real life, not a game. Besides, five of those winning footballs take up a lot of space on the shelves…
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.
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.
“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.”
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.