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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The Question?

“The Question Is Not What You Look At, But What You See.”

~Henry David Thoreau

Sometime progression for Parkinson’s {and other neurological diseases} is marked by how people see you {or your loved one} on a particular day.

We are asked  “How’s Don doing ? Last time I saw him he was struggling.”

or

We hear: “Hey, How’s Don? I saw him and he looked pretty good.”

Those living with Parkinson’s know, it can fluctuate minute by minute or hour by hour.

I find it necessary to not see our family or Don’s path through others eyes but how we want to remember our journey.

Summer 2015

Summer 2015 – Don,  Hadley (7) and  Libby Horton (12)

Through A Different Window

~ Bless those who see life through a different window

and those who understand their view ~

Be who you want your children to be

Independence Day 2015

Children Of Parkinson’s

Never Lower Your Expectations Of Kindness

There are elements of Parkinson’s Disease that are rarely discussed. When outsiders think of the disease, their mind often flashes first to the always-lovable Michael J Fox and his great demeanor and positive outlook. Optimistically, we prescribe to his Always Looking Up mentality, but in reality, there is a whispered side of Parkinson’s that those in the community live every day.

Parkinson’s Disease is the world’s second ranking neurological disorder, yet other than the textbook tremor, many people are unfamiliar with the symptoms. It would be a great case study to examine how people who are unaware of the disease can treat a person who has the disease. When we go out as a family, we notice these people. We feel the stares, hear the loss of patience, and see the rolling of the eyes. We can imagine what is whispered. We’ve heard questions asked if he is drunk. We listen to the obligatory, “I’m sorry” once we disclose the diagnosis to new acquaintances. We are aware of both friends and strangers relief, thankful it’s not them.

As parents, we witness our children’s response as they look down to the ground, awkwardly wishing the moment would pass. Children are best at observation. They quietly read body language, posture and tone. They understand differences. They are forever processing. They are honest in their assessments and when they relay things back there is often no filter.

Our youngest daughter innocently asked, “Why do they think dads unseen” and in a recent journal entry she wrote
” People tret Dad like hes invisible and think he is werd. Like when people see him they make mad and bad faces😟”

“People tret Dad like hes invisible and think he is werd. Like when people see him they make mad and bad faces☹”

It pains my heart that at seven she understands that people glance over her dad, but yet she can’t process it. Here’s the man who she loves and thinks is amazing, but at the same time, struggles with others recognizing that there is something very different or strange about him. He has had Parkinson’s her whole life, and she knows that his disease at times can be limiting and hard. She is innately kind and patient, but each instance questioning why others find this difficult to do. Through her eyes I see the disconnect.

I don’t have an answer for her.

I could tell her ~ It’s ignorance. 
I could tell her ~ They don’t know better.
I could tell her ~ She was wrong and excuse away the behavior.
I could tell her ~ They are just having a bad day.
I could tell her ~ It doesn’t matter.

But we won’t

It (he) does matter.

Ignorance is not an excuse.

In 2015, regardless of what someones ailment is, they should know better.

She does understand and their behavior is wrong. What she is seeing is real – insensitive, unkind, inexcusable, thoughtless people are among us. She watches her father fight everyday to do things he once took for granted, from small things such as buttoning a shirt and writing to much larger things like walking, talking and keeping his balance steady. She sees him. He is not invisible. His love is as real as his challenges. He’s not “werd” (weird). He’s just her dad.

It’s a shame to say that people’s perceptions of us can affect our daily lives; that negativity and neglect could shape our children. Our goal is to make sure our girls never lower their expectations of how they should be treated and vice versa. Circumstance has taught my girls strong lessons, and I am grateful for the virtues that they now hold.

Treat others how you wish to be treated yourself.
No one is irrelevant.
Kindness matters.

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

DSC_0168

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

A Part of Hadley's Letter To Santa - Age 4

“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 ?

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.

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.