Category: EB Awareness and Research

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I have started to book and promote the second semi-annual ‘Rocker’s for EB Awareness’ Event.

I have some great bands and some good people on board. Thank’s to Sean and Casey for being willing to host this tremendously important event.

I just feel a bit overwhelmed. I don’t know how to talk to people very well, I am not a promoter or a booking agent. I am not so sure what I am doing and I just wish I had the ability to better fundraise for such an important cause.

What I do know is that I am pleased that I can give back for all that I have been blessed with and given in my life. I guess it is the effort and the true spirit that lives in your heart that matters.

When I think of the poem written by Courtney Roth I can’t help but realize that this is very important and although I am not a powerhouse fundraiser, we all need to start somewhere!

Dear EB,

Because of you, my child does not know a life without pain.

A simple touch causes him pain.

Because of you, my baby does not live the life that a child should live.

Because of you, he can’t even be around other kids.

We’ve never been on a play-date.

He has never played in the dirt.

Because of you, my TWO year old does not know what the park looks like.

Or what a bike looks like.

Or what a dog looks like.

Hell, I don’t even know if he remembers what his MOMMY looks like.

Because of you, my son has never spoken a word.

He cannot say “Mommy.”

Because of you, he lives with a tube in his throat… and still has trouble breathing.

When something is wrong or something hurts, he just cries big tears and can’t even tell us what is wrong.

Because of you, he cries to get out of bed in the morning because he knows he has to have his diaper changed before he can rock-rock.

Because of you, ALL HE WANTS TO DO is rock-rock.


Because of you, when I say the word “bath” my child does not get excited and ask me if he can add bubbles to the water or bring toys along… instead he cries and gets extreme anxiety thinking about how painful it is.

And I am the one inflicting the pain.

Because of you, he has no idea what it is like to actually sleep through the night.

He doesn’t get to “snuggle” with his Mommy before bedtime.

Or any time.

Because every touch is painful to him.

Because of you, I have a mini Pharmacy in my house.

And I could possibly build a small house out of the bandages and ointments he uses in one month.

Because of you, my son has not be outside in literally over a year.

Because of you,  I cannot go swimming with my son.

I cannot take him to the zoo.

Or the movies.

Or to a friend or family member’s house.

Or take him ANYWHERE for that matter.

Because of you, my child is so confused as to what “hungry” means or what “full” means.  He gets fed by a tube 3 times a day on my time, not his… because he can’t tell me when he’s hungry.

And if he does feel hungry enough to put something in his mouth, it hurts too bad to keep eating.

Because of you, my baby has infection eating away at his raw sores.

Because of you, he never stops itching… not even after his bath.

Because of you, my child could not dress up for Halloween this year… and he has never been Trick-or-Treating.

Because of you, he spent last Halloween in the hospital, and this Halloween in the rocking chair, crying while holding his stomach in pain.

Because of you, last Christmas my son was too sick to enjoy a single toy from Santa… and this year, he will not be able to see his Christmas tree, his ornaments, or any of his presents.

That hardly makes it easy to get in the “Christmas Spirit.”

But then again, you make NOTHING easy.

He won’t get to help me “bake cookies” for Santa, or he won’t be shaking me at 5 AM on Christmas morning to wake up so he can open his presents.

Because of you, I have a feeling of absolute helplessness and disgust in my stomach every single day- whether I am smiling or not.  It never goes away.

Because of you, I secretly laugh inside when someone complains about something.

I can’t help it.  I try not to laugh out loud.  But it’s humorous the things people complain about.

Because to me, my son is the only one who needs to be complaining… but he doesn’t.

He smiles.

You know why?

Because of me.

Because I am the BOMB at pretending like I don’t hate you for what you have done to my baby.

My heart constantly feels like someone is giving it an “Indian burn”… twisting it in knots.

Because of you, I feel as cold as ice… just plain emotionless and heartless sometimes.

Almost like I can’t understand why everyone’s life can just go on while my baby is suffering.

Shouldn’t the world just stop… Because of you?

Because of you, my only child’s life is slowly deteriorating before my very eyes.

And because of you, there is nothing I can do about it.

But I will beat you.

My son may or may not have the chance to beat you,

but I will.

You might think that you can win, but you can’t.

I will not stop until the mention of your name is known across the world.

Until the doctors hear of you and say: “Psssh, EB?”

“That’s nothing, we can fix that!”

Because of you, it is my goal that no child should suffer like mine does.

Because NO child deserves this pain.

Because NO parent should have to be making the decisions that I am making.

And NO life should be taken,