Saturday, February 22, 2014

A SLAVE TO TSC . . . ?

To TSC (Tuberous Sclerosis Complex):

We had never heard of you when you randomly entered our lives,
You ruthlessly descended on our first born son, changing the trajectory of his life.
How cruel you can be, filling our lives with calamity.
Because of you, our son endures severe autism and ADHD.
We are constantly guessing when he’s in pain, he cannot speak.

We never know what you will do next.
A new surprise challenge lurking around every corner.
So many life-threatening possibilities:
Brain trauma, kidney bleeds and maybe failure.
Will his heart stop beating? Or will he go into status epilepsy?

You are unrelenting, unforgiving, you see?
Controlling every single moment we breathe.
We are slaves to all your twists and turns.
We are not free: to travel, to play, to relax,
To make quick trips to the grocery store.

We cannot leave any door open,
Or any item overlooked in our house.
Or, it will end up ruined, destroyed, thrown about.
The financial burden you inflict is enormous.
You wreak havoc in every aspect of our lives.

You make us play a constant guessing game.
We don’t sleep. We are never at peace.
You demand all our time and energy.
I fear shutting the door when I lay my son down to sleep.
I panic, “Will my son live through this night?”

You leave us feeling crazy,
Fear driving our days and nights.
I see TSC in every ailment, big or small…
Every out-of-the-ordinary move could be a sign of something big.
I’m constantly questioning, “What is real and what is not?”

You control our past, present and future;
Have taken our free will. I despise you.
You inflict so much pain: emotional, mental, physical.
We are forced to bend to your command,
As you demand all our time and energy.

You leave us isolated. We feel so alone.
No sure answers or solutions.
Even professionals don’t know how to help.
You don’t draw empathy,
And leave us feeling like no one understands.

You are unknown to most,
Yet unlike cancer, you leave no possibility for a cure.
Unlike diabetes and heart disease, there is no way to proactively manage you.
You have created an impossible task,
As we try to deal with what you throw at our son.

You have tried to take my child from me.
In spite of this, he shines.
Through all the chaos, I can still admire his curly hair and his deep brown eyes.
His eyes: so inquisitive. There is so much there.
You try to block it, but I can see who he is.

You try to break us:
Creating harrowing situations that leave us in anguish.
You have come close to success so many times, making us question who we are.
But in those moments we fall to our knees.
Praying to God to help us through each tragedy.

Our son brings joy to all those whose paths he comes across.
Without you, who would we be?
Would our child’s accomplishments mean so much?
Would his laughter and smile be as bright?
You’ve made us realize: We are not here for him, he is here for us.


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