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.

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Four letter word……Help!

In a family of 12 you learn very quickly the meaning of the word HELP. Help your sister tie her shoe. Help drive your brother to basketball. Help your mom by doing the dishes. Sometimes you knew you were “helping” by not asking for anything – because your mom and dad may be consumed with something else. I am not a stranger to the word or concept of lending a helping hand. As a child I witnessed my dad help complete strangers. I recall hearing, “Mike, why are you late tonight?” “I helped someone who needed a lift somewhere.” “Who dad?” “Nobody I knew, just someone down on his luck.” My dad’s quiet, humbling kindness was always there and from my mom, the same. She would also throw in, after a search of something missing, “say a special prayer to St. Anthony”– the patron of lost things.

Back Bend Demonstration

Back Bend Demonstration

As a mother I witness help. Libby helping Hadley master a back bend – lesson I hear – You can do anything! Libby helping Hadley learn to read – lesson I hear – I know you are smart and capable AND worth my time. Libby teaching Hadley the rules of tennis and life – lesson I hear – I will always be here for you if you need anything . Hadley schooling us all on her made up knock knock jokes – lesson I hear – It’s important to always laugh. A recent favorite of mine… “Hadley, this is what you do if someone makes fun of dad”. (which unfortunately has happened) Lesson I hear – Siblings understanding strength and unity.

Learning a Back Bend

Learning a Back Bend

As an adult I’ve helped. I make an attempt to help families, both that I know and who are complete strangers. I volunteer my time, thoughts and resources – all of which I know I can do more and should. I am trying to being an advocate for Parkinson’s. One of the manifestations of the disease is a quiet voice and I am happy to lend mine for the cause. I try to help my own family build the tightest indestructible wall of love, that no one OR disease can break.

H E L P

But this four letter word has been haunting my soul. I am an avid reader, lately, not as much for pleasure but for research. The Michael J Fox Foundation published a Facebook post that encouraged people to “share” or comment. Most were lengthy compelling stories about life challenges and changes. I read them all but when I close my eyes at night I still see one mans response. It was four simple letters – one simple statement and if I were being completely honest, a desperate plea. It simply read “Help”.

Today I feel like asking. Help us find sanity. Help us find patience. Help us find peace and if I could channel my mother, St. Anthony, Help us find a cure!

Sisters

Click Here For Audio – Carly Simon

 

Two Little Gazing Standing At The Sea

Two little sisters gazing at the sea,
Imagining what their futures will be.

TWO LITTLE SISTERS LYRICS – CARLY SIMON

Two little sisters gazing at the sea,
Imagining what their futures will be.

The older one says, as her eyes look around,
“I will go as far as the corners of the town.
I’ll plant a little garden, flowers everywhere.
And pluck the most fragrant for my hair.”

I will go as far as the corners of the town

The older one says…..

Two little sisters gazing at the sea,
Imagining what their futures will be.

The younger one stands with her eyes open wide.
And says, “I’ll go as far as the corners of the sky.
I’ll gather all the stars each night as they appear,
And pick the very brightest one to wear in my ear.”

I’ll go as far as the corners of the sky

The younger one stands……

I didn’t choose you and you didn’t choose me.

I didn’t choose you, who would guess we’re from the same family?

But, what will you do when the nights get cold?
When the stars grow dim and your dreams seem old.
Watcha gonna do when winter calls,
And your flowers fall from the garden walls?

I’ll come home to you, you’ll come home to me.
My love will be your remedy.
I’ll choose you and you’ll choose me.
We’ll be two daughters dancing by the edge of the sea.

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I’ll come home to you, you’ll come home to me.
My love will be your remedy.

The best remedy for Parkinson‘s.

A Childs Awareness of Disability

Siblings

Sibling Love

Disability is a broad word.  We live with one. Parkinson’s. And by “we” I mean my husband who battles it everyday, myself and our two sweet children.  It means different things for both of them.  My oldest in someways is the lucky one. She has had many more care free experiences with Don prior to his diagnosis.  When I remember her childhood I have vivid images of Don pushing Libby in her Reebok jog stroller to parks in Boston. Going down, what seemed to be at the time, a huge slide in front of her just to catch her- not an easy feat for a 6 foot 4 man. Picking her up when she fell or tossing her in the air for a thrill.  Sitting on the floor playing Polly Pockets for hours. Trying to teach her golf, basketball and how to really throw a football-  “a girl with the proper grip will impress many people in life” he would say. We had four years of living in this relative bliss.  Then the diagnosis- which we thought didn’t REALLY apply to us.  His progression will be slow.  He’s in such great physical health. For the love of God, he works out everyday for two hours – sometimes a contention in our marriage.  Eats healthy.  If anyone could fight this it would be him.  It cant happen to us.  It will be a long time before the outward signs start to manifest.

Hadley Ellison- our spitfire

Hadley Ellison- our spitfire

Then we had daughter number two. – a sure spitfire!  We made a conscious decision to have another child knowing that Don has Parkinson‘s.  Truth be told after his diagnosis I was even more driven to try to have a sibling for Libby.  I couldn’t bear the thought that an only child would have to endure the burden of the disease alone.  Hadley’s  life with her father has been great just in a different way. Any time she gets is appreciable and looked at as a gift.  Don plays Polly Pockets with her as well.  He’s interested in her basketball skills and wants her to learn the proper way of handling a football but the innocence of her youth seemed gone before she was born.  For all of us dealing with big issues, it sometimes seems unfair.  My 43 year old brain has difficulty dealing with Parkinson’s daily. What can this 5 year old be thinking?

Map of Disablity

Map of Disability

I don”t have a map for how I am to handle this with my children. Often I lay awake at night and second guess how I do, but the other night I was proud. My oldest recently went ice skating at night with a friend and her family.  She came home late.  I asked- “Was it fun?” “Yes mom -a blast!”  “I’m just really tired.  Can I go to bed?” I could tell there was something else on her mind.  Night is our “talking” time so I put the youngest to bed and then went to Libby’s room.  We started our chat… “What was the best part?” – a question I always ask to find the light in her eyes.  “Mom, a lady there fell.” I reassured her people fall all the time.  “No mom she REALLY fell. I think she broke her arm.”  Again reassuring her it will be alright.  I replayed a story that my mom had the same type of accident just on roller skates.  It landed her in a cast and time with a physical therapist. “MOM (clearly I was missing something) the ambulance was there and I think she had a disability.”  Stopped in my tracks I decided I needed to listen closely to the answers of the questions I was about to ask.  “How could you tell she had a disability?”  “Mom, I could just tell.”  “Did you see it happen?” “No.”  “Did you try to help?”  “No mom. I couldn’t and she didn’t have anyone there with her and it looked like it really hurt.” “Did you think she was scared?”  “She had to be. Mom, I’m scared.” “Scared about what?” “I’m afraid that something might happen to dad and we won’t be around.  No one should be alone mom.”

When my head hit the pillow that night I was dismayed about my inability to calm her fears because I cant promise her anything.  I can’t promise everything is going to be ok.  I can’t promise he wont fall.  I can’t promise I wont get sick- a questions she asks regularly.  I have no promises for what lies ahead for us.  We don’t know what will happen- we have to expect the unexpected. But I do know we can promise we will always be there for her dad.  I was  proud that my daughter understands that there are people who may stand out to her for different reasons in this world and that NO one should be alone in their fight.

Together Forever

Together Forever