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)

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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.

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.