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!
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.
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.
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.
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!).
Don, in turn, took my brace faced picture, purchased a side by side frame and inserted his playing days football picture.
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.
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.
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.
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.
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.
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.
I am a small part of the world.
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!
I am humbled to share Justin’s story and his company UNlimiters. He has created a wonderful resource center to help so many. Please take a moment to watch his video but more importantly to hear his words
Watch here –
Felling like an outsider is not acceptable in today’s world! WE should all feel like we can do what everyone else can.
Born with Cerebral Palsy, UNlimiters founder Justin Farley has always had a passion and determination to live an unlimited life in big ways, and in small ones.
For example, because his Cerebral Palsy causes shakiness and unsteadiness in his right side, Justin always struggled with buttons and fine motor skills. But with the help of the MagnaReady shirt, Justin can dress like the business professional he is.
I am happy to be a small part of his journey.