Thursday, August 6, 2009

The lap of my daddy

I have felt it for the last few days. Although I couldn't actually say specifically what was going on I knew I was stressed. My body does funny things even when I think I'm fine. So I wondered what it was and when I would figure it out. I think I knew the whole time, but didn't let myself believe that was the problem.

I have done really well with all of this nf stuff over the last month or so. However handling the idea that your child is anything less than super healthy is often a process. I'm not sure if there are typical steps or not. So in the last couple of weeks I have noticed quite a few new spots and am positive the spots I'm seeing on her bum are the freckling. So I feel like everyday as I change her diaper I have to accept it again; like perhaps something has changed and those spots aren't there anymore. I have tried to say it out loud a few times. I think I am working through accepting it still. She truly has this disorder, and life ahead holds numerous unknowns.

However I woke up at four thirty this morning for no reason. When I finally fell back asleep I had a dream. There were people in it, and it started normal, but the end turned out being this man standing and just reminding me of all the things that could happen to my daughter because of nf. I know. Believe me I know, and I'm not sure what this dream was about. However when I woke up feeling physically nauseous thinking about it I knew this was the source of my stress.

I was awaken by Abigail being ready to get up and eat breakfast. She has gone through her morning routine and is down for her first nap, and I still feel this dream. I sort of want to stuff it back down. I feel silly even thinking about nf sometimes when she is fine right now. I talk to other parents and people who have nf and often feel so grateful for the things we have already bypassed as possibilities. People keep telling me that most people with nf have a "mild" case. What exactly does this mean? Abigail will have spots all over her, maybe some learning disabilities and a few tumors. We will go the doctors two or three times a year for nf. Reading that, to some, may sound mild. I am aware that there are lots worse things. Perhaps I'm not looking at things from the "right perspective." However, my daughter having tumors, even if they are benign, does not feel mild. My child getting made fun of for looking different and learning difficulties is not mild. It is hard and something that I will have to help her through.

Some of you reading this may have been the ones reminding me that it is often mild. Don't take this personally. I need reminded of that as well so that I don't go off the deep end with the "what ifs." It's just that sometimes I forget to let myself be sad or angry at the thought of everything. I tell myself I should be thankful that I even have a child, or that she is alive. These things once again are good to be thankful for. I just get so wrapped up in them that I'm not letting myself work through the process. So today I am going to spend some time grieving. I'm going to tell people that I don't want to hear about their issues, I want to spend some time working through mine. I'm going to crawl up on the lap of The Heavenly Father, put my thumb in my mouth and just snuggle in tight and cry for a spell. When I feel like I am done with that I will let Him wipe the tears away. I will climb down and do my best to care for others; now that I have taken care of myself.


  1. I think sometimes you have to do this for yourself. Good for you.

  2. It's called grief. It comes not just with death, but with any negative, life-altering news -- like cancer, or infertility, or NF. I'm glad you got to spend some time with your Abba today.

  3. any nf is too much nf. mild, severe it all sucks. yes perspective is important- but you will grieve this- like we all do- I'm sorry. If you need an nf mom to talk to call me- my number is all over julias website i know what your going through, its rough.