A long time ago, I made a promise to Livy that I would always be there for her. I have kept that promise. Now it is time to bring people together from across the country to be a part of something meaningful, to create epilepsy awareness and to raise funding for research so that a cure can be discovered.
This is the first time I have written about the promise I made to Livy years ago and what it means to me. Livy’s epilepsy has changed me. And now it is time to fight back.
A Father’s Promise
Livy, from birth I have watched you.
I am scared.
What do I do?
I am not ready.
I look in the mirror, eyes glossed.
Tears, I wish they were happy.
Why, why is this happening?
I am lost.
Doctors, EEGs, surgeries, shunts, oxygen machines, hospitals, medicine pumps.
Beeping, would someone please stop the beeping?
I hold my breath when you do.
When will it stop, when will the seizure stop?
Ashen, you are ashen.
Finally, it breaks.
You are back.
Where did you go?
Do you know?
Do you know what happened?
Time is stolen.
Tick-tock, lives torn apart
10 seconds, 10 minutes, 10 hours, 10 days, 10 weeks.
But look at you, Livy.
You amaze me.
Your smile. Your gorgeous, beautiful smile.
You light the room, you light my life.
I know you are back when you smile.
It is your signal that all is clear.
The monster is gone.
Back to the closet, under the bed.
Hiding, lurking in the shadows.
Epilepsy, you are the nightmare.
You terrorize our children.
Waiting, always waiting.
I know every move you make.
Did you see her flinch? Is that a new twitch?
Always one step ahead.
But someday, somewhere, I will catch you.
You think you are free.
Turning lives upside down.
Striking whenever you please.
No more. No longer.
I was afraid.
I saw eyes that were not Livyâ€™s, quivering, bouncing.
That look. It was not her. It was you.
Now I see through the fog.
I am emboldened.
The fear I once felt, tucked down deep
Now burning, boiling, a yearning to do more.
Epilepsy, you picked the wrong dad.
I did not ask for this.
But I accept it.
I accept your challenge.
You give me purpose.
Was that your intent?
I do not think so.
You may have her now, but I am coming for you.
You have stolen from me.
My daughter’s innocence.
A life of peace.
I will not give up.
I will not relent,
I will never give in.
You have awoken me, a passion I never knew.
As long as I am here, I will fight you.
Yet you are a coward, you attack our youngest and most at risk.
No matter sick, hurt, asleep in their beds.
At night I check, chest rising, skin warm,
What would I do if she took her last breath?
It happens, the ultimate price.
I have read stories, so many stories.
The pain, the anguish.
I hurt for them.
I am angry.
You made me.
I am your enemy.
I am not alone anymore.
I will gather determined mothers, fathers, sisters and brothers.
Warriors in your throws aching to break free.
You have no idea what you started.
Think Livy is your victim?
You are wrong, very wrong.
She is a Hero, my Hero, with the power to inspire and give hope.
She is stronger than you could ever dream.
You used to make me cower, retreat.
But now I am emboldened.
The scars burn and I remember.
Oh do I remember.
Livy bears her scars, physical, emotional.
What you have done to her.
Her little body.
You broke her so many times.
My God, what I have witnessed.
My heart and soul are changed.
But you will not beat me.
I will chase you and never stop.
Wherever you are, I will be there.
You have found refuge in the shadows.
But no longer.
I will bring you to the light and show your true colors.
My color is purple through and through.
If our Warriors falter, I will be there to lift them up.
To tell their stories.
This is your last warning, Epilepsy.
I am here to make my stand against you.
I made a promise to my daughter.