I have asked a thousand ways that You would take my pain away.

It's almost annoying. The past few weeks Abigail has been well. We are on week two without a need to see the doctor. Everything is going pretty well. We are having fun, going on outings, getting things done. I feel semi-normal again.
But I can't get this stupid NF thing out of my head. It goes in burst where I'm fine and seem to be handling things well. Next thing I know I spend a week crying about everything, not wanting to talk to people, and aching to make this horrible nightmare go away. I wrestle with myself. It could be worse, I say. It doesn't help. So then I swing to, it's okay to grieve. Then back to pull yourself out of this you have a wonderful little girl who has very little compared to what she could have going on with NF.
When the day is over I am exhausted from being a mama to a toddler and spending the day in emotional shambles. So I lie down and immediately begin thinking of NF. The house is quiet. I am the only one awake and over and over I think about Abigail's spots, and neurofibromas, muscle tone issues, and wonder. What does the future hold? Is there more going on that we can't see because it's inside? Is she in pain?
Truly when I am going through a hard time the thoughts are nearly constant. I think that it may be close to what it feels like to be insane.
With life in general I know that there are no promises. We are not in control. However even saying that I feel like I'm in control. If I'm hungry I eat, when I want to go somewhere I go. I have this illusion that I am mastering my own life. With NF I feel like I am fighting with everything I have to be in control. And all that fighting leaves me empty handed. I end up back where I was; knowing what the future might hold, but not knowing what it does hold. Wanting to wake up and realize that this ridiculous long word that came into our lives nine months ago wasn't really ever there.
But it is there. So I move forward hoping that I can figure out how to deal with this. What I really want is someone else to talk to. I have made friends online with a few moms. They have been fantastic. But I really want to go sit down and pour out my heart and pain with someone who understands. I do this with Jason. However there is something about being a mom that makes it different. I want to talk to another mom.
I spend some time on a few forums. For the first few months I posted some things, but now I mostly just read and try to respond to people. However through this I have met a really wonderful woman who has a daughter with NF as well. She is extremely knowledgeable and has been a great friend to me. We write back and forth as well as I ask her a million questions that she graciously answers.
I asked her a question a few days ago that I only half way wanted to know the answer to and just told her I was having a rough time. Her response came this evening. First she reminded me to take care of myself. Although that seems silly it's an important reminder. Sometimes I get so caught up in everything else I forget to do what I need to in order to stay healthy. Then she said she wished we lived closer so we could go for coffee and just talk.
Although we can't, because I don't have a passport to get into Canada, and that would be quite a drive, it still filled part of that desire. What I really want and need is someone who understands, someone who knows the worry and pain, someone who reads all of the new studies that the children's tumor foundation post every month, someone who spends hours every week reading medical journals and looking up words so that she can be informed about neurofibromatosis. This woman is all of that and has been dealing with NF for years instead of months. I feel grateful to have such a wonderful friend even if we will most likely never meet.
I'll end with some lines from a song that I really like. It sums up how I'm feeling in a simple way.
Artist: JJ Heller
Song: Your Hands

I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That You would take my pain away
That You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crookedly lie
Oh Lord, before these feet of mine
Oh Lord, before these feet of mine

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

When You walked upon the Earth
You healed the broken, lost, and hurt
I know You hate to see me cry
One day You will set all things right
Yea, one day You will set all things right

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

Your hands
Your hands that shape the world
Are holding me, they hold me still
Your hands that shape the world
Are holding me, they hold me still