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Living the Puzzle - Christmas Edition

By Ellen Dampf
December 14, 2020
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Watching Polar Express is a yearly tradition in my family; everyone’s favorite that doesn’t begin to annoy you after watching it 50 times.  It was on the other night and we popped the popcorn, marshmallow-ed the hot chocolate, and donned our coziest slipper socks to join Tom Hanks and friends on this crazy train ride.

This year, I watched it differently and it was unexpected.  First, let me start by saying that this year for my family has been an out-of-control train ride.  First the pandemic.  Nothing more to say about that. Just prior to the start of the COVID outbreak, things changed.  We live the puzzle with my 16-year-old son.  But those pieces just do not want to stay together.  Puberty, hormones, frustration- everything erupted, and we began living with an unrecognizable human being.  The sweetheart that I would watch Sesame Street with became the Tasmanian Devil, the Incredible Hulk, with a dash of Elmo to top him off because I know his gentle and funny soul remains in there somewhere.

Josh Groban said it best as he sang Believe.

Children sleeping  
Snow is softly falling
Dreams are calling
Likes bells in the distance

There hasn’t been much snow yet, but I made my own metaphor out of this. To be honest, I keep so much to myself.  I don’t want anyone to look at my son differently and when the going gets rough, I retreat and find it hard to talk about things. And everyone has their own struggles.  Mine are no different from anyone else’s.  Anyway, I’ve been asked on occasion,” How are you handling things?” The answer is in the lyrics.  Reflect on the calm and quiet. Look at old pictures of my children sleeping.  I have so many because watching my son and daughter sleep has always been one of my top favorite things to do.  In case you are curious, yes, I have been schooled on how creepy and weird that is by my 14-year-old daughter.

I dream about when my family can feel stable, whole, and at peace again.  But like the bells, I can dream about it, but it is still in the distance.

We were dreamers
Not so long ago
But one by one
We all had to grow up

Reality hits.  When I was younger, I had the typical dream of getting married, buying a house, having children.  Like many others, I assume, I never thought about hardships but focused on the concept of the ideal family.  As speed bumps came along, I dealt with them and put them behind me, and moved on.  With each bump, I grew more and differently.  

Then comes the autism diagnosis.  I addressed our road to the diagnosis in a previous blog, but just to recap- my son was a preemie.  He was born at 23 weeks’ gestation and weighed 15 ounces. A death sentence 16 years ago.  For years, we expected developmental delays and he needed time to catch up.  So, his autism diagnosis came much later and wasn’t recognized right away because he had so many other medical issues.

My dreams weren’t shattered.  I had to find new dreams, new goals.  Each day, each diagnosis, each escalation, each hug, and kiss- all of them- has made me grow up into someone I never thought I’d be.  A nurse, an advocate, a teacher, a bodyguard all rolled into one.

When it seems the magic slipped away
We find it all again on Christmas Day

Believe in what your heart is saying
Hear the melody that's playing
There's no time to waste
There's so much to celebrate

And give your dreams the wings to fly
You have everything you need
If you just believe

For us, the magic has slipped away, temporarily.  We are blessed to have services and programs at our disposal to help with these behaviors.  We had to make the difficult decision to remove him from school and admit him to a day partial- hospitalization program. It is best for his future and we really had no other options. 

I’m having a hard time decorating this year.  This is by far the most trying time in our lives.  But it’s time to shake it off.

Christmas has always been very special to my family.  It is when we are at our happiest.  Scratch that. It is when I am at my happiest. (Happy wife=happy life, right??) The magic, the decorations, gift-giving, and Christmas Caroling.  People come together to help charities and children in need. It’s a reminder that there is still goodness in this crazy world and it’s time for my family to reflect on important lessons. 

Despite where my son is on the Richter scale, we have so much to celebrate.  We are learning new skills and given new tools to help him; no matter what is happening, he still tells me he loves me; I hear him laugh every day; I watch my daughter include him in activities, and my husband always makes sure we all have what we need.

Josh was right. “Believe in what your heart is saying”.  Everything will be ok.  Maybe my dreams and visions for the future will need to be altered, but that’s ok.  I will give my dreams the wings to fly because I do have everything I need.  My new dream is to look forward to one positive, productive day at a time.  That is our new future. And I do believe.  You have to.  Believe in your gut, your heart, and believe in your children.

Trains move quickly
To their journey's end
Are where we begin again

Ships go sailing
Far across the sea
Trusting starlight
To get where they need to be

When it seems that we have lost our way
We find ourselves again on Christmas Day

If you just believe

Just believe

Read more of Ellen's "Living the Puzzle" series discussing being the mother of a child on the spectrum: Living the Puzzle: COVID-19 Edition and Living the Puzzle: Back to School.

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