Monday, December 6, 2010

I'm doing okay.

Really I am. And by okay I mean I haven't fallen apart, despite the fact that I probably have the right to. And I'm fine. By fine I mean that I have held it together when people have said trite things that make me want to punch them and tell them to come back and talk to me when they have experienced something outside of a "healthy child." And the stomach flu doesn't count.
Perhaps it's because we had Abigail's IFSP today. Perhaps it's because I STILL haven't heard back from the doctor and am beginning to get pissed about it. And then just maybe it's because I feel like the world is completely outside of anything I can control, but I'm having a rough night.
I looked at my daughter tonight and wondered what kind of battle was waging inside her sweet little body that I couldn't see. I seem to swing between peaceful and scared to the core of what might happen over her lifetime...whatever the length of that might be.
There are some probably "little" things that have followed the large blow I felt when I stood listening to the nurse read the MRI report to me. Emotionally I felt like it was a blow that just immediately leaves you lying on the ground unsure if you really want to get back up again or just try to do life from the fetal position you are in.
And then as you are lying there, trying not to think of the pain you move the wrong way and it send that surge through your body. There was first the realization that even though Abigail loves to dance and play basketball, neither of those things will be long term options for her. And then came the moment that I was told that Abigail would qualify for a Make-a-Wish trip one day. It's one of those charities everyone knows about, and has an immediate reaction when they think about kids who get to go on those trips. Not a bad or good reaction, just a reaction. And it's not one where you think, "I hope my kid gets a trip like that someday."
But really as I sit here tonight I want to scream the pain out. I want to yell at the top of my lungs "Go to hell NF. I hate you and everything you do to people. I hate the pain, the uncertainty, and the havoc you reek on children, adults, families, and lives." But NF can't hear me, and I don't want to wake up my sleeping husband and daughter. So instead I sit hear with a heavy heart wondering if the pain will ever decrease. I have my doubts.
I will leave you with a few thoughts. I love the story of Shadrack, Meshach, and Abednego (it's in the book of Daniel 3 if you want to check it out) and the words these men speak as they are getting ready to be destroyed. I know people often have questions along the lines of how do you continue with a faith that "allows" something like this to happen. And it might be easy to walk away, and to put my hope and faith in doctors, medical research, and a cure. None of those three things are bad. They just aren't where my hope comes from, and if I begin to put it there then I am bowing down to something other than my God. So here are the words of these three men:
"If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and He will deliver us from Your Majesty's hand. But even if He does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up." Daniel 3:17-18

I'm certain I have said this before, but no matter what happens with Abigail's NF, I will not bow down to anything other than the One who can save her. Because even if He doesn't save her from the NF here on earth, she will experience life without pain, tumors, or any of the other labels doctors have given her. She will one day be able to run, jump, dance, and walk with no struggles. She will some day be free.

Leaving you with this song to go and listen to. It goes hand and hand with the verses above in my heart (it's on youtube so I'm not endorsing the video in any way).


  1. i love that verse. and in some small way, i feel like i might understand a little bit.

    if you want to yell, give me a call. honest. i would listen.

  2. Trust in the Lord with all your heart and lead not unto your own understanding but trust in Him and he will lead thy way.

    I repeat this to myself dozens of times. Dozens........

    I've thought about the Make A Wish Foundation. Sometimes, I think that I should call them about Joey. With all that he's been through.....I think he deserves a good time somewhere fun. I think that for the whole family.

    Even my daughter who is only 2 years older than him has gone through a lot. I mean she's been there when Kevin and I have been distant because of worry, she's been there when Joey was in the hospital and she stayed with me because we had no day care to drop her off at. She's gone to the surgery waiting room with us for the same reasons.

    Anyone that has a sick child...the entire family deserves a good happy forget about it all trip.