Friday, September 4, 2009
the world of nf
Abigail taking her last bottle...
Another day, another thing to worry about!! That is how everything feels with nf. I have been trying to research a lot lately so that when we go for Abigail's appointment at the nf clinic I am not taken by suprise. I want to make sure I know as much as possible so that I don't feel like I did in May; because I don't remember much of what the doctor told us. So if I go in knowing as much as I can I won't be thrown off, and hopefully will better be able to deal with whatever the doctor tells us.
In all of the research I feel like I have learned things that have calmed me some, and things that scare the hell out of me. Although I know that nf varies from being nothing to killing people I hadn't let myself go quite that far in the things that could happen thoughts. So last week I was looking online and found a blog about a little girl with nf. After I read about three entries I realized she had died from it. In the third entry there was an eulogy from the funeral of a little boy who had also died from complications with nf. However the eulogy did a great job summing up what I have not been great at putting into words yet.
So now I will start with my thoughts on nf and God. I DO NOT believe that God gave my baby nf. I do not believe he is "testing" Jason or I in any way by giving us a child with nf. I do not believe we or anyone around us has sinned in a way that we are being punished for. I believe that Abigail has nf because there is sin in the world. When sin entered the world, so did sickness and death. That's it. There are tons of questions that can be asked after that, but I don't need to ask them yet. It's fine to ask why, how, and a myriad of other things, but we haven't needed to yet.
I do believe He can heal Abigail if He chooses. I also believe that whether nothing else ever happens with nf, or whether we lose our baby bug way too early, He is God and He is good. Although our lives have been rocked with this new buzz word, God is the same as He was before we knew about it, and will be the same forever. The best example of this I can think of is still the story of the three men in the fiery furnace. They were going to be thrown in if they did not bow down to something else. There response was beautiful (this is a paraphrase); we believe our God can save us, but even if He doesn't, we will still not bow down to your idols. We believe our God can heal/save Abigail, but even if He doesn't we will not bow down to anything else ever.
So I'll end with the hard part of our Friday. I made a doctors appointment for today with our family doctor. She looked at the two spots we had noticed on Abigail. She confirmed what we already had discussed (and maybe somewhere in our heads knew). They appear to be neurofibromas. Tumors. Makes for a rough Friday. Sometime next week we should be figuring out how to move her nf appointment up.
So Jason and I will spend the evening, and three day weekend, hanging out with our daughter and talking. We aren't up for talking with everyone else about it right now. We are in need of prayers. We are doing "okay" but are both sad for what may lie ahead for our daughter. Thanks for all of your love and support.
Enjoying our daughter,