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.

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Father’s Day Via Instagram

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.

Always be my no 1!

 

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.

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.

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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

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!

Lucky Number 7

Dear Mr. President…my dad was fired for having Parkinson’s

A thing we have learned on this journey, is that a disease affects the whole family and to not listen and validate our children’s voices would be ill-advised.

Children’s words are often uncomplicated and simplistic.

Our eldest daughter came down the stairs a year ago, handed me a letter and declared “I need you to mail this.”

The White House Pennsylvania Avenue Washington, DC

The White House
Pennsylvania Avenue
Washington, DC

I hesitated…… my brain unable to process what was happening…… came to… and said yes.

I opened it.

"He dint do anything wrong."

“He dint do anything wrong.”

Read and re-read it.

Wept for her reality.

He Didn't Do Anything Wrong

He Didn’t Do Anything Wrong

Drove to the post office

and as I slipped it in the mail slot, I felt overwhelmed by her ability not only to articulate but to EXPECT change.

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Because as a family we stand together, united to speak out, proud and leaning forward for those with disabilities that aren’t treated fairly.  It’s NOT enough to just wish Don to get better but, as a unified group, we have to BE better and foster change.

Libby did receive a response back from The President.

I think she felt she was heard.

Her truth was hard to handle but the real truth of being fired because you have a disease is a blinding reality for too many people in our community.

We will affect change.

Keep Going!

Don’t Stop Trying Because You’ve Hit A Wall……DSC_0128Progress Is Progress No Matter How Small!

Never know where you'll end up if you don't keep going!

You never know where you’ll end up if you don’t keep going!

 

Just Being Is Fun

Sometimes we dwell on the changes we have undergone and are scared of what lies ahead but because of these two little ones we opt for a different path.

I never lose sight of the fact that just being is fun. ~ Katharine Hepburn

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Quote is by Katharine Hepburn – Many know her from her amazing breath of work on-screen.  Others know her for having Essential Tremor as well.

Essential Tremor is a neurological condition that causes a rhythmic trembling of the hands, head, voice, legs or trunk. Some even feel an internal shake. It is often confused with Parkinson’s disease although ET is eight times more common and affects an estimated 10 million Americans alone.

A few great resources for ET are  International Essential Tremor Foundation and Tremor Action Network

Another quote by Katharine Hepburn

“Now to squash a rumor. No, I don’t have Parkinson’s. I inherited my shaking head from my grandfather Hepburn. I discovered that whiskey helps stop the shaking. Problem is, if you’re not careful, it stops the rest of you too. My head just shakes, but I promise you, it ain’t gonna fall off!”.

Different Views

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Often there is a struggle trying to communicate what the journey with a life changing diagnosis such as Parkinson’s is like…. to quantify or elucidate. We all experience it differently, through our own unique lens.

I know that we can not control our children’s outlook but only help them navigate.  I have learned however, to not try to define or categorize their concerns, questions or fears but to try to see the light through their ever shifting vantage point.

Some times it’s a close up and it is all you or they can see

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Close ups provide perspective.

and other times the lens is wider.

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Panoramic views provide hope.

Every journey is different.  Every moment, every decision, every prayer.

We all experience things in our own time and our own ways.

Through the pilgrimage you will truly LOVE the ones who may not be able to see all the stones on your path but can still visualize the panoramic view of your trek.

Broad Shoulders

I ask not for a lighter burden, but for broader shoulders.

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I ask not for an easier path, but for stronger feet.

My Path

I ask not for weaker enemies, but a stronger me.

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Let life do with us what it wants, but let us be strong enough to handle it.

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Stamp And Send Love

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.

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Horton Christmas Card 2008

From the mom of a close friend of mine asking for something so simple.

It read:

“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!

Horton Christmas Card 2009

Horton Christmas Card 2009

From all the Horton’s much love and hope this holiday!

 

 

Until there is a cure we will be the change.

 

Believe In The Magic Of Christmas

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.

May you always believe in the magic of season.

May you always believe in the magic of season.

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.

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PS….. Damn you moms that think it’s ok to spread your disbelief.  Sometimes that’s all we have and need.