Today I signed another consent form for Evan.

Another form saying that I’m ok with someone cutting into my son’s body.

Another form saying that I understand the risks of them cutting.

Another form that gives another person the right to hurt my child.

I’m supposed to protect him.

Not allow this stuff to happen.

But, like all things in this journey, Evan needs this.

This time, I signed a consent form for a surgeon to cut into his stomach and place a tube in it so he can “eat.”

Evan worked so incredibly hard. So, stinkin’ hard.  But, we were not making his daily intake goals.  And the concerns for him are dehydration.  Have I mentioned that his heart anatomy relies on him being well hydrated, if not, clots can form…and those clots can travel to parts of his body to cause a stroke?


So, risk reward, yet again.

My unnatural state of deciding what option is better…the lesser of two evils.

Options feeling like “no option” many times…because if not…Evan could deteriorate quickly.


It’s not right that I have to  make these choices for him.  It’s not right that I walked into our house today and couldn’t breathe because I was crying so hard, while Craig held me, whispering in my ears how scared he was too, as our boy…our sweet, smiles for miles baby boy, just sat and babbled and played like all is well.

I can’t believe in  3 days I’ll be letting them “hurt” him again.

But, he needs it.  The unnatural state of him….how he needs all these things to survive…to thrive…he needs it.

And I need him to be safe.  I don’t care how my boy looks after surgery.  I don’t care how I have to feed him.  I don’t care if there are tubes coming out of his stomach.

I need the Supernatural God to step into the operating room.  I need the supernatural nature of healing to happen.  I need the supernatural miracles to happen – to protect my boy from infection, to protect his heart, brain, organs, to keep him safe…again.

I’m asking God again.  I’m begging God again.  I’m storming the gates of Heaven with Evan’s name.  Crying out…again…to please protect my boy.  Because as his Mama, its the only natural, right thing I can do.  Because everything else to date…has been so unnatural.

I just want him back.  Better than before.  Safe in my arms.  And then safe at home with his family.

Where he belongs. The natural state of things.



  1. My dear friend. I completely understand the anguish you and Craig are going through. It sucks. It isn’t the life you want your child to have. We have been robbed of so much, yet we have been given a deeper understanding of the preciousness of life. Not many appreciate every minute of our sons’ lives the way we have been forced to. All I can offer you is my love and my prayers. I don’t want this for Evan, but like you said it is needed. Cry it out, cry out every ounce of fear and sadness for what is coming. Because the day it happens you will not have room for it. God will replace your sad face with a brave face. You will come out of this even stronger than you are now. I love you friend. Hugs for you and rasberries for Evan.