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.

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Sleep Baby Sleep

Sleep Hadley Sleep!

The wonder her dreams are filled with.

The peacefulness of a child sleeping.

Mom mistake number 1 in parenting was made the first week Libby came home from the hospital. The blunder pediatricians warn and clinics are devoted to. The one where, at the library a vast section of parenting books are indexed on; how to avoid, solve, terminate and demystify.  Ring a bell? If so, you know the name Dr. Richard Ferber and my mistake…..sleeping with your child.

It began quite innocently and seemed so natural.  There was this new little life that we were responsible for. How could I close my eyes and sleep without her by us? What if she needed something and I didn’t hear!?  So, in one room there stood a beautiful new pristine white Bratt Decor crib and the other, a bed filled with 3 bodies.  At her 1 year check up the doctor declared “You have become Libby’s pacifier” and urged us to stop. I made an attempt to put and end to it but she sat there screaming, to the point that she made herself sick and I caved. It wasn’t worth it to me.  Four years later, we were welcoming a new blessing and the biggest transition was getting Libby ready to sleep on her own while we made the number 1 parenting mistake …..again.

Libby and Hadley are completely different as most siblings. From their demeanor, to their likes, fears and sleeping habits.  Libby lays there peacefully, in one spot, always on her side, ready to tell stories, share her day, say her prayers and close her eyes. In the morning she almost always in the same position.  Hadley the complete antithesis. She is never ready to surrender for the day! A ball of energy. Afraid if she closes her eyes, for just one moment, she may miss something. Even while sleeping, her body is constantly in full running motion.

I never gave much thought about how my children slumber until Don’s Parkinson’s diagnosis.  Don was a crazy sleeper and dreamer, always experiencing a game or practice in the middle of the night. Many times I was woken to a play being relived and I was a collateral practice dummy.  I attributed his sleeping habits to lack of it.  Coaches work non stop.  Watching and re-watch film until the wee hours of the morning.  So, it was natural to me that he couldn’t turn the switch off.  While pregnant with Libb, in the black of night, I was awoken to  Don “going for a ball” and “we” were in the way.  Many nights are spent playing musical beds because of this.

Then I read one of the first warning signs of Parkinson’s is a failure of  “muscle control” system to work during REM sleep. People in the early stages of Parkinson’s disease may have unexpected movements and act out their dreams during REM sleep. They may jump out of bed, kick, punch, jerk or moving ballistically during REM sleep, at a time when movements are usually suppressed. This sign may appear eight or more years before other Parkinson’s symptoms develop – and it may be the first sign a patient has. Then it all started to make sense.

Someone recently asked me if I would have the children genetically tested to which I responded adamantly no, for a variety of reasons.  It deeply worries and haunts me after watching Hadley sleep that she is more like her father than just her features and temperament. At night, when I start down the path of terrifying thoughts that our girls may have to face Parkinson’s in their future, I just look to the right, see that sweet baby face, listen to her breathe and say a special prayer, just between me and God.

Spring Break With Michael J Fox

Parkinson’s Awareness Month means just that…Be Aware.  Aware that many people are fighting to find a cure, several are securing funding for the possibility of relief, droves are digging in to promote education, treasured people are teaching how to live fully with the diagnosis and umpteen individuals are empowering acceptance.

My eldest brother and his family, traveled recently to Los Angeles to assist The Ohio State University Buckeyes basketball team in their quest to make it from their Sweet Sixteen standing to the goal of NCAA champions.  He sent me a text – no words -just this picture.

Spring Break with Michael J Fox

LA with Michael J Fox

I quickly showed it to my girls (ages 5 & 10) and their faces lit up like fireworks.  Not many people under the age of 20 really can say they know the film works of Michael J Fox.  This had nothing to do with Marty McFly.  “Awesome” Libby exclaimed.  Hadley said “lucky” and wanted to know if they had met him. At that moment, they didn’t feel alone.  Their awareness helped my girls feel accepted.  Happy that their 10 and 13-year-old cousins would extend a silent hand to say not only do we understand but we are here to support you.  It says we stand beside you, with you and in kid language, we have your back.

Thank you Mike and Beth.  Awareness can be small simple gestures too.