~ Bless those who see life through a different window
and those who understand their view ~
Independence Day 2015
Children Of Parkinson’s
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Through A Different Window
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Tag Archives: battle parkinsons
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
Braving the fight for 9 solid years and counting! Don, Libby And Hadley Horton Spring 2015.
May Our Faith In A Cure Always Be Bigger Than Our Fears
The holidays are all about believing.
‘Tis the season to take sheer delight in our small children’s innocence and lovingly see the sparkle of something so grand and mystical in their eyes. I want to hold on to it forever! Believing in things we can’t see should be eternally ingrained in our souls. Children’s hopes for the holiday season can sometimes be far reaching. Our little one had a separate note for Santa on top of her wish list.
She asked for those traditional things little girls dream of
– Isabelle, The American Girl Doll Of The Year
– Eifell Tower Lego Set
– Acrylic Paints and Canvases
– A Sock Monkey
and
a cure for Parkinsons
“I Believe You Can Change Parkinsons” – Part of Hadley’s Letter To Santa – Age 4
She just believes…. that Jolly Old Saint Nicholas can change Parkinson’s
and I will never tell her he can’t.
May her faith in a cure always be bigger than her fears.
Resilient ?
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!
Children Thriving In The Face Of Adversity.
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
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
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.
Do You Hear What I Hear?
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.
Because you are important…. I listen.
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.
We are in this together!
Until there is a cure we will be the change.
Small Part Of The World
Click Here For Audio
– Connecticut MEA 2011
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.
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?
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.
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.
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
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!
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!
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
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.
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.
A Gentle Reminder
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