Tag Archives: poetry

Tuberous Sclerosis Complex Awareness Day “Thingie”

Day 15 of Blogging for TSC Awareness Month

by guest blogger Julia Gray  (Atlanta, Georgia)

I’m supposed to write about my identity.

Frankly, that’s easier said than done.

I’ve been told that INFP personalities,

Like me,

Have a hard time getting their thoughts and feelings

Out of their heads and into real life.

In the words of Holden Caulfield,

I can’t explain what I mean.

And even if I could,

I’m not sure I’d feel like it.

But I might as well try.

I am tumors

Surrounded by a body

A brain

And a vast imagination.

I am an annual MRI visit.

I have to lie completely still, quitting my twitching and itching for an hour while I lay inside a huge metal cylinder that takes pictures of the problem areas.

I am an uneven heartbeat

Belonging to a heart that wants to dance away from its problems

Or just write or draw them into oblivion.

I am the constant fear that when I zoned out just now I had a seizure and didn’t notice.

I am a lot of things.

An imagination.

Unending passion.

Personality.

I’m not just a cluster of tumors.

They say I’m a rarity,

An unfortunate privilege for people like them.

Unfortunate for me, that is.

They love it.

When my disease, my tumors and I walk into a room together, and the putrid medicinal smell pervades my nose,

We are involuntarily attached,

And they thrive on it.

I’m like a scientific oddity.

They are an undesired gift

For them and their white coats to gawk at and inspect.

I am known as my disease.

But I am not my disease.

Or my tumors.

I am a victim of it.

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To TSC:

Day 4 of Blogging for TSC Awareness Month

by guest blogger Annaka Vimahi  (Utah)

originally posted on her blog

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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Tuberous Sclerosis Complex Awareness Month – Joy

Third Annual Blogging for TSC Awareness Month  Day 1

by guest blogger Ryan Kennedy  (Woodward, Iowa)

Joy

Who knew what this journey had in store?

I was going to be a father again.

My wife held a child within.image1

A healthy birth, everything looks great!

Joy!

Who saw this coming?

A heart murmur

A routine doctor’s visit

A heart tumor

Hope.

This can’t really be TSC. Can it?

More doctorsimage3

Neuro, nephro, cardio, genetics

My son has TSC.

Pain.

How bad will it be?

Infantile spasms

Sleepless nights

My son has autism.

Grief.

What does this mean?

He walks.

He laughs.

He smiles.

He has joy.

He gives me joy.

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The Cure

Second Annual “Blogging for TSC Awareness Month” Day 15

by guest blogger Lisa Cummings

THE CURE

When one day we hear the words,

“We have found the cure!”

A shout will be heard round the world,

Of this you can be assured.

There won’t be any more illness, hospitals or pain,

It will be our miracle, where only joy will reign.

Our children will know playgrounds, instead of hospital beds,

Our children will know restful nights, with peaceful dreams instead.

Our children will know release, from pain they have so bravely endured,

Oh, how our hearts shall rejoice, “When we have found the cure!”

Our children who have never walked, will step to mom or dad,

Our children who have never talked, will say the words we knew they had.

Our children who have behaviors, will know inner peace,

Our children will only know happiness, their daily struggles ceased.

Rare diseases, untreatable, no hope, those words will be obscure,

The shout will be heard round the world,

“When we have found the cure!”

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You will not let TSC define you.

Second Annual “Blogging for TSC Awareness Month” Day 10

by guest blogger Kaci Kennedy  (Woodward, Iowa)

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I tell myself TSC will not define my child. It will not define who he will become. Who he can become.

Yet fear lingers. It tries to overtake.

It attempts to invade my mind. My husband’s mind.

the moments. Moments when fear overtakes…

was that a seizure. that eye movement. that arm twitch. that look.

It wants to crush all of our hopes and dreams for our little one. It wants to tell us he can not, he will not.

I want to fight. I want to have the strength to fight. To fight for my precious one. To show TSC you have no power.

You, my little one, give me that strength.

You do not know what TSC is. You will not let it define you. You smile. You roll over. You reach out for me to hold you.

You triumph daily. Every moment.

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Please check out Kaci’s blog at http://kaci-jo.blogspot.com