Tuesday, September 8, 2009

and so what we have learned...

okay, this may not actaully be what we have learned, but hopefully you all have the veggie tales song in your head now!

The three day weekend was GREAT!! We got to do fun stuff as a family, spend time talking, laughing, and crying. We went to the farmer's market, hung out with friends, played at a park, and went hiking. It might not get much better than this. I was pretty sad Jason had to go back to work.

We did spend time talking about nf and what is coming. I think we both have accepted that she has it. It makes us both very sad. I will not go into all of the things we talked about and what things mean now because there are some things we aren't ready to share with everyone yet. However the biggest thing we talked about was mortality. Now the tumors she has are most likely benign. It is very rare for them to be malignant.

Most people realize at some point that they are going to die. We all will. However very few people think about the fact that their children will some day die. The natural order of things is that they out live us. This is the reason that when people lose children it seems so much harder than losing a parent or spouse. Even though these others are hard, it is something lots of people go through and can relate to.

However, as we are learning more, and trying hard to face things realistically I can't help but think that there is a real possibility I will out live my baby. This isn't saying anything definitive, just that it is a possibility. Every time I think this though it is accompanied by that still small voice reminding me that His grace is sufficientfor me.

Right now we are on a list for Abigail's appointment to be moved up if there are any cancellations. So we are praying for one. Usually children with nf don't even have anything beyond the cal spots until between four and eight I think, and tumors are rare before puberty. So we aren't sure why things seem to be showing up all of a sudden, but think that it warrants investigation!

We are feeling the peace that comes with all of your prayers. As we come to the Lord over and over on behalf of our little girl it is great to know there are others at His feet asking for the same things we are.

"The Lord your God is with you,

He is mighty to save.

He will take great delight in you,

He will quiet you with His love,

He will rejoice over you with singing."

Zepheniah 3:17

Glad that this who our God is,


  1. I'm glad you had a great weekend, and I just prayed that you would get an earlier appointment.

  2. Just checking back in to see how you guys are doing. Stay strong! The uncertainty of the disorder can be overwhelming, but always remember that most cases of the disorder are mild. Don't let the uncertainty get to you.

    Side note: I am actually the co-captain for the NF Endurance Team at the Indy Mini this spring. The team brings a lot of hope to many parents with kids with NF. There may not be a cure yet, but we are going to find it! The positive community that the team provides is something that could be a good coping mechanism for you as your daughter grows up. I know I wouldn't be where I am today without the hope and support the team has given me over the past five years. Whether we ever meet or not, I'll be sure to keep your family in my prayers and on my mind as we race for that cure.

    Joe Gunn