More than I bargained for

Eileen

CHD is cruel.

It’s with this disease that you realize life is a precious jewel.

You’ve had surgeries, echo’s, ekgs, catheterizations

And your two.

Hold on, why are your lips, hands and legs turning blue.

You want to run,

But you can’t keep up

You’re so sick of the monthly check up’s.

Hospitals; a home

Surgeries on the regular

Oxygen; tests,

Why is her heartbeat irregular?

Before surgery…

There’s that last hallway hug and kiss.

When will life be better than this?

Blood pressures, wires, stress tests, galore.

I shouldn’t know the names of a dozen cardiac drugs,

I’m four.

Complete heart block,

What do you do?

A pacemaker will fix it.

Its gonna save you.

Wires and leads implanted into your chest,

A mini computer that paces your beat,

So, you’ll be able to walk down the street.

Medtronic, a brand that should be foreign.

Can’t do this and that… so many precautions.

Will there ever be a cure for this?

You shouldn’t have to comprehend this,

Your six.

device interrogations, VT arrythmias

Cardiomyopathy and heart failure

Shouldn’t be in your vocabulary.

I was oblivious to the fact that these terms make most adults weary.

I could explain all these terms, while looking you straight in the face.

I was eight.

You’re at the pool,

It’s a summer day.

You can’t wait to get out to play.

Swimsuit on, ready to go

But wait, those scars on your chest,

There out for show.

You try to hide them the best you can.

You shouldn’t have to worry about this,

Your only ten.

Your rare diagnosis

a degenerate disease

Mom stays up late, researching for hours

losing more and more sleep the longer she delves.

She shouldn’t have to do this,

You’re Twelve.

Heartbeat’s 280

This is life threatening,

Another surgery.

You don’t even have time to wrap your head around this one.

11-15-11…

In you go.

During the surgery,

You code.

Your brought back,

You survive,

Your chest; cracked,

You’re in the CICU

Helping you stay alive,

A breathing tube and Morphine

You shouldn’t be going through this,

Your fourteen.

On the outside,

Your disease is invisible.

On the inside,

doctors stare at the screen

like it’s something they’ve never seen.

Your just sixteen.

Your much more aware,

This disease has become a burden too much to bear.

I’m realizing this is lifelong.

This horrid monster isn’t going anywhere.

But it’s also made you, YOU.

I’m confused.

Holy cow, I just want to scream

I’m eighteen.

More Surgeries,

hardware sewed into the chest.

I want to rest.

These surgeries cost so much money,

Thank god for Catastrophic policies

Your Twenty.

You’ve been through thousands of

appointments

Hospitalizations

Surgeries

Echo’s

Ekgs

Your pacemaker dependent

But your heart, its mended.

You’re a warrior

You’re a survivor

You grew and grew,

And look you’re here to see

twenty -two

and many years more,

-CHD you gave me way more than I ever bargained for.