Just Make the Pizza!!! The Reality of Dystonia 2016-11-16T08:37:39+00:00

Just Make the Pizza!!!
The Reality of Dystonia

by Brittany Rosebrook

tannerpizzaJust make the pizza.

I’m not talking about roll out the dough, spread the sauce pizza, I’m simply saying to turn on the oven, throw the frozen pizza in, and make sure it doesn’t burn.

Simple enough, right? It should be.

On a night where our six-year-old son needed to get to one of his activities, after finishing his homework and getting ready, all we had to do next was eat a simple and quick dinner—so, tonight became the famous pizza night.

My husband was taking care of Tanner, our two-year-old son who suffers from Alternating Hemiplegia and severe dystonia every day, among a laundry list of other complexities. He turned the oven on to preheat it, and threw the pizza in as I was getting our other son ready to go.

Dystonia decided it needed to make its nightly visit, and Tanner began breath holding, sweating, contorting, stiffening—and all the classic signs that a full body episode was again on its way. As I began rushing to complete the “getting ready” process with my son, I decided we weren’t going to have enough time to actually eat it, and so tonight quickly became turkey-sandwich-with-yogurt-and-veggies night for my older son.

Minutes before we absolutely had to get out the door to be at his activity on time, my husband asked, “Are you going to watch the pizza then so it doesn’t burn?”

“What??? NO!!! I have to get him to his activity!! You can’t WATCH a pizza to make sure it doesn’t burn!?”

And the answer, simply stated, but unspoken, was no.

He actually couldn’t make sure the simple frozen pizza in the oven for another 10 minutes (at most) wouldn’t burn. Dystonia took over our lives yet again, and the focus had to be on Tanner, and making sure he was going to get through this episode and still be breathing in the end. No, we weren’t going to eat the pizza for dinner that night, it just wasn’t possible, but at least our older son was fed dinner, and was still super excited for his activity.

The lessons of life, or should I say the reality of our lives, struck me hard after a few minutes in the car driving my other son to his activity. The distance I felt from the norm to our “norm” was a world away.

A frozen pizza. Who knew it could be so powerful? Simple, yet everyday thoughts, activities, and plans, are so different from everyone else we know, that it blows my mind at times, and yet, keeps me grounded and moving forward with a determination I never thought possible prior to Tanner entering our lives.

Once I left the house, I thought deeply about the entire situation. In the stressful moments of rushing to get my older son fed and out the door, I snapped at my husband with a thoughtless, “you can’t watch a pizza to make sure it doesn’t burn?” The answer is simply no when you are dealing with severe dystonia.

With that scenario, I’m left feeling even more grateful for every day that we all have together. I am grateful for my husband, who has never given up on our family, and works hard everyday to ensure I can stay home with our son and give him the best that I can. I am grateful for my older son, who is so adaptable it is amazing, to all of our family and friends who have supported us, who try their best to understand, and who would do anything to make our lives even the tiniest bit less complex.

I am grateful for Tanner, who suffers far more than most adults ever have in a lifetime on a daily basis, and yet he can still smile, he can laugh and make us laugh. He was perfectly placed in our family two years ago. Tanner has taught us more than we could have ever imagined, because of all of his complexities, and I am forever grateful for him. Though we have night nurses to take care of him while we sleep, though our days are filled with medications, therapies and appointments, and though everyday consists of us being doctor, nurse, and therapist, I cannot imagine a life without Tanner.

So with that said, who ever said you couldn’t eat pizza for dessert at 8:45 PM?

My older son got home from his activity, and that’s just what we did. Tanner was already soundly sleeping for the night, and so, when my son got home, the rest of us ate that pizza. Nobody lost a limb that day (as I always say for a good day), and we were still all here in our house together, grateful for another day, and even more grateful for things not getting worse medically for Tanner than they could have.

Though as stressful as those previous moments were, the pizza tasted just as good as it would have hours before.

And no, it was not burnt.

There’s a Champion Inside of Me

From the minute I was born
I was known as a “champion.”

They told me I would do great things
just look at the joy I already bring.

Would I climb up Mount Everest?
or would I soar through space?
Would I surf in the ocean?
I will eventually find my place.

My place was in the hearts of those around me
My love for everyone soared faster than you could ever see

What does it mean, to be a champion,
I was not too sure,
but I knew that I needed to investigate more.

For I was born different, extra special, you see,
Even though it made no difference to those around me.
I have more struggles on a daily basis,
but I get through them, and I remember where my place is.

Home is where the heart is,
and that is so true.
Each member of my family,
helps me get through,
the tough times, the sad times, the in-between times,
the happy, the exciting, and whenever help is needed on the dime.

For what is a champion,
I still am not sure,
but I do know one thing,
my love is so pure.

I love those around me
with all of my heart,
I am the best kind of champion
because of my start

For the love they have given,
surrounds me everyday
I just wish I could show them
in so many different ways

My body doesn’t always let me
but they know it’s true
it’s felt in the kisses I give ‘til I’m blue

I have to take medicines just to get through,
I am promised, it’s a job no one likes to do,
I take them with triumph,
and no one knows how,
but I do it because I’m a champion,
I should probably take a bow.

Hope can be seen through the eyes of you,
We will find the cure,
We won’t stop ‘til we do!

You’re our champion, son,
and we’re so proud of you,
fighting through the hardest of times like you do.
We will stop at nothing,
to find you that day,
where no longer can anything get in your way.

No matter what,
you are loved more than we can say
Our little champion,
Together we will stay!

We will continue to grow
our community of friends,
who also search for a cure,
and won’t stop ‘til it ends.
We love you, our champions,
and you know this is true
our hope can be seen,
through the eyes of you.

Author: Brittany Rosebrook • Date: 10/7/2016

About the Author

Brittany was shaped for this complex life long before she knew it. She has always had a passion for working with children who have special needs, and has an associates degree in early childhood education and a bachelors in psychology. For many years, she worked in homes, schools, and communities one-on-one as well as in classes, loving the celebrations of success that were possible each day, and with each individual child.

Her son, Tanner (age 2) presented symptoms of dystonia and alternating hemiplegia of childhood from the day he was born. Little did she know how much life would change, and just how complex it could be, but every day is a gift and she lives with a new level of always feeling grateful and finding the positives. She is now a stay-at-home Mom so that all of Tanner’s complex and trying needs will be met each day to set him up on a path of optimal success.

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