The Drake Rayden Foundation, was founded by Eric and Tarah O'Sullivan, to bring hope through the gospel, raise awareness and funds for better treatment for Drake, and all children, affected by NKH. 

© 2017 by Drake Rayden Foundation.

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Mailing Address:

2607 Woodruff Road,

Suite E, PMB 352

Simpsonville, South Carolina

United States, 29681

July 1, 2019

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Please Fight For Me

August 29, 2018

 

My mom brought over a book of poems I had written when I was probably in middle school.. I have to say it made me laugh because I had completely forgotten about them, and I was the kid good at math..not english... so it was funny I had a book of them.  Must have been a requirement.

 

Now fast forward to now, and if you would have told my middle school self I would be keeping a blog and I am writing poems again...I would probably let out a big sigh of "oh no, english is never going to end..."

 

But..I was vacuuming the other day, listening to my headphones (this is when I take mini breaks).  I clean with my headphones on while Eric takes over kids, and it gives me a break from all the noise of the house... good noise, just mamas have to filter some "me" time in there too.  Don't know if that is pitiful that my "me time" is vacuuming, but that is besides the point. I was vacuuming and a poem came to mind..so I wrote it down.

 

I think I am always trying to find the words to describe living life with a child that has a terminal disease... and honestly some days there are no words sufficient.

 

To all the warrior parents, and families, out there fighting against the diagnosis... I hope this brings encouragement.

 

 

Please Fight For Me.

Written By: Tarah OSullivan

 

The diagnosis is in,

The odds are not good.

They have brought in the best doctors,

but the disease is still so misunderstood.

 

They tell us, “There is no treatment, there is no cure,

Your baby will die, and if he lives, he will suffer.. that is for sure.”

 

“We can take his food, we can take his air,

He will barely notice, he is probably not even still there.”

 

“You can choose to try and fight it, you can choose hope,

But you are far too few, the tide is coming, and there isn’t a boat.”

 

As I lay there listening as you talk to the doctors, 

I am begging you to see me…to fight…..to care.

 

I am trapped in this little body….broken….dying….and in fear,

But I can still hear you whispering, “my sweet baby… hang on, Mommy

and Daddy are near”.

 

I hear you tell the world…”We will fight for our boy,

There isn’t a mountain we won’t climb, or a shore we won’t explore.”

 

I listen as you talk and you pray over me.

“You are our child, our son, our breath that we breathe.”

 

“You are strong, you are brave, you are a child of the King,

Do not let the world tell you what you will or will not be.”

 

“You fight, and we will fight with you, and one day son,

You will know the freedom to laugh and to run.”

 

“So, don’t you loose your fight, don’t you let doubt in,

Because Mommy and Daddy are right here, and we will NEVER give in.”

 

Galatians 6:9… Never give up hope.

 

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