Wednesday, June 24, 2009

Restful and afraid....

As the medicine enters my 11yr old son, putting his shaking and terrified body to sleep.....a tear rolls down my cheek. Thoughts of regret about the choices I have made, begin to to throw me into a downward spiral of guilt.

"What have I done?" I brought children into this world that are going to suffer endlessly from the pain that NF brings.

The thing about NF, is that it not only affects the physical outward body....It torments the soul. Breaking the spirits of people, who have the potential to become so much.

This is why I work so hard at building my children up, from the inside--out. Fueling their worth, and protecting their spirit. I will not let this monster grab hold of my babies.

I don't dwell on the fact that NF is a part of my life....In fact, I am trying to do the opposite....why not use NF to make me stronger? Wouldn't that teach that nasty, tumor filled beast a lesson?

I used to hide from NF....never admitting I had it, or that it could affect me. I had that "It can't happen to me" attitude. I threw the covers over the NF and pretended it didn't exist. I was ashamed....afraid.

Now, seeing my own children facing the unknown of NF....I want to let them know, that they don't have to be afraid. I am here. I will guide them through the darkness. Like Jesus, who is always here for us....

I will not continue to be afraid. Instead I will find strength and move foward, even during the times I am weak. My children are looking to me, to help them through the darkness.

So, as my son opens his eyes, still groggy from anesthsia, I hold his hand....and tell him how brave he is....and how truly blessed I am to have him in my life. At that moment.....I have no regrets.....just endless joy.


  1. sometimes it is all we can do
    (hugs) great post and a warrior attitude.
    I have NF1 too and so does at least 1 of my sons.
    I hope all goes well for your son.

  2. My son has his next NF apt on 8/13. They have not done an MRI on him yet as he just turned 4. When did they start with your son? Thanks for sharing your experiences and I will pray the results are good for your son. I am always thinking the same things--how can I build him UP so that he can face this head on some day!?

  3. Braden has not had any MRIs before this one. We were told by Drs that if he showed any signs of needing one....we would do it.
    Recently Braden had been having migraine like headaches.....the kind that leaves one laying in bed all day.

    I had to fight to get the MRI...but I feel its the best thing.

    We will know results in the coming week.

    Thanks for the great comments!