Tuesday, October 27, 2009

As the day draws near.

It is slowly making it's way into my thoughts again. It is like it has sort of crept up slowly and now it's moving at full speed. We have one week left until our first nf appointment. For the most part I have prepared myself...I think. I am fairly certain that the diagnoses will be made official. From that though, I don't know what else to expect. I don't know if they will want to schedule an MRI, or x-rays, blood test, appointments with a geneticist, or oncologist. I just don't know.

And that is the part that has me lying awake. The unknowns. What if they find something. What if she has a horrible tumor already that is slowly causing her more and more issues. What if.....I can't even bring myself to write very many of the other things I can think up. So I find myself attempting to fill my time with reading and checking facebook. My mind numbing housework is hard to do because everywhere are small reminders of Abigail; and they nearly always lead me to thoughts of the appointment.

It is the last appointment that we have to make it through for a month. That is granted that she stays healthy. A month might not seem like very long, but we have been to at least one doctor appointment every week for the past six weeks. A month off would be a huge relief. I'm glad we are knocking out three appointments on Tuesday as well. It means that we will be at Riley ALL DAY, and that we will most likely have a tired crabby kiddo, but it will all be done.

Since my goal of this blog is to be honest and informative I will tell you I am scared. I am scared for my daughter and what her future holds. I am scared that she will have a severe case of nf and go to be with Jesus well before I am ready to let her go. I am scared that I don't have what it takes as a mom to do what's best for her. I am scared that she will be bitter at God one day. I am scared that my heart will break from the pain I feel and the longing I have for her to not ever have to face this sort of disorder. I am just scared.

Since I am being honest I will also tell you that I don't want to hear that God only gives me what I can handle, or that He has some sort of purpose for this. I have said this before and will say it here. God did not give this disorder to my baby. He is not testing me or Jason. He isn't trying to find out how much we can handle. She has a disorder because the world is a fallen place.

Psalm 121
A song of ascents.

1 I lift up my eyes to the hills—

where does my help come from?
2 My help comes from the LORD,

the Maker of heaven and earth.
3 He will not let your foot slip—

he who watches over you will not slumber;
4 indeed, he who watches over Israel

will neither slumber nor sleep.
5 The LORD watches over you—

the LORD is your shade at your right hand;
6 the sun will not harm you by day,

nor the moon by night.
7 The LORD will keep you from all harm—

he will watch over your life;
8 the LORD will watch over your coming and going

both now and forevermore.

I am thankful that my God is watching over my baby. He is much better at it than I will ever be. I need to sleep sometimes. He holds her all the time. Just like Abigail so sweetly sings;

He's got the whole world in His hands,

He's got my baby bug in His hands!


  1. I stumbled onto your blog quite by accident... seeing the NF1 reference in your header caught my eye, and I stayed to read. My husband has NF1, but didn't find out about it until he was 36, suffering from chronic pain with no answer. The MRIs found the tumours, and the tumours introduced us to NF1. I know your pain and I don't. Praying for you as you wait for this upcoming appt.

  2. I'll be keeping you guys in my prayers. I met Dr. Hingtgen at the Chasing Down the Cure 5k in Carmel this summer for NF research. Your daughter is in good hands!

  3. We were there too...so maybe we have already met? That's where we met the wonderful doctors and I feel good about going to Riley! Thanks for the prayers...

  4. Possible! I was the tall skinny guy wearing the NF singlet. (Pretty descriptive I know.) I came straight from my summer job working at a camp in Brown County so I may have been pretty rough looking... :-) Glad to see the appointments went well!