Wednesday, July 8, 2009

walking in hope

So this year was my first mother's day as a mother...the last two I have spent wanting to be a mother so it was pretty exciting.

The Wednesday before we had taken Abigail to Riley for what we thought was going to be an appointment where they said she's great and healthy and you are the best parents ever...okay not the last they did say she's developing great, growing, and extremely if we didn't know that...but they said she has lots of cafe au lait spots that indicate a genetic disorder and then I didn't hear everything else because my hearing faded in and out for a while. At the end of the appointment we walked out shocked. I feel like we probably looked like those people they show on television staring blankly ahead with our mouths hanging open as we walked to our car. We tried to remember what he had said on the way back to Muncie. Something about tumors and freckles and coffee and milk. None of those things make sense together. He gave us a website to go to and a stern warning that looking the disorder up on the Internet is not a good idea. It can do horrible things, and you don't want to see it. So if you are now curious the place to look is children tumor or and look for NF1.

Back to mothers day. Jason and I spent the next few days talking and crying...I didn't sleep well because I would wake up and lie there for hours thinking about my daughters body being full of tumors. Sunday morning daddy got up with Abigail and they brought me breakfast in bed along with my presents. Abigail gave me a picture frame with her hand print, footprint, and a picture of Abigail and I. Jason gave me a beautiful card and told me that I could get my tattoo. Now for those of you who know me well I am pretty straight and narrow. I got my nose pierced last year (much to some of yours dismay) because I think that nose studs are really beautiful. But ever since we decided to use tohelet (a Hebrew word that means hope) for Abigail's middle name I have thought wouldn't it be cool to put this on my foot as a symbol of walking in hope while we wait for our daughter. However tattoos are pretty permanent. But after reading about NF we realized all we could do is hope in the Lord and wait. So I did it. I'm literally walking with hope as we move forward with this crazy unpredictable disorder.

A few small disclaimers at the end...if you don't approve of my temple art (tattoo) please keep it to yourself. I am a great wife and mother and this is not affected by my art. Also if you are full of wonderful horror stories about NF or any other genetic disorder, please keep them to yourself. I need encouragement, and no help thinking through worst case scenario. I have done that all by myself.

Walking forward in hope,


  1. I haven't any idea what to say, but because you supported us so much through our trials a few years ago, I really wanted to say something. I won't tell you that it will all be fine, because you and I both know that sometimes things don't work out the way we thought was the RIGHT way. But we learned that God is still God. And while we wish he would explain to us why he allowed things to happen the way they did, we know that he doesn't owe us that. Who are WE that he should have to explain himself to us? Anyway, I know I haven't seen you in a long while, and I don't know what specific kind of help or support you might need, but I will be praying for you as I read your blog. And if you think of some way I can support you, please let me know.
    Karen K.

  2. thanks karen...we actually really feel that peace of God is good and sometimes I feel cheesy and like one of those people who gloss things over when I hear myself say that...but honestly we feel that...prayers are coveted mostly...we'll let you know anything else