All About NF

I was born broken. My left lung collapsed. From early on, I had a long, rough road ahead of me medically speaking. The amino said I was fine. Everything pointed to me being fine - but people were mistaken. I was not the healthy, vibrant baby that my parents were expecting. If only the collapsed lung was the only problem...

When I was three years old, I was diagnosed with neurofibromatosis type 1. NF1 occurs in one in every 3000 births. I currently have no visible tumors, but have lische nodules, or benign tumors, that are visible in both of my eyes. I have several cafe au lait marks, which is one of the trademark signs of NF1 (in fact, I don't believe there is another disorder that these marks occur in). I have armpit freckling, a larger-than-usual head, and bone deformities. I have learning disabilities (namely dysgraphia and an in-process DX of one in math).

NF is kind of my overarching disability. All my others stream out from having NF. I see a specialist for it, and I'm at high risk of getting cancer or tumors some day. My back surgery is so important because due to the NF1, I have dural ectasia and vertebral scalloping in addition to the regular curve.

NF affects my heart, it affects my learning, it affects everything about me. My NF is the reason that I am the way I am now. There is currently no cure, but there is work being done to find one to help children. I, with a moderate case, am one of the lucky ones, believe it or not. My case is progressive, and will continue to take over my life.

May is NF awareness month. To keep up to date on progress on this crippling disorder, become a fan of the Children's Tumor Foundation which will give you all the info you need.

May we one day find a cure.
May we one day find an answer.
May we one day heal this disease that causes me to live in pain every day, bounce from doctor to doctor, and suffer silently.
May we one day be able to say, NF is an extinct disorder.
And until that day, may we find a way to live in peace.


jesus christ superstar do you think you're what they say you are

"He is Risen! He is Risen, indeed!"

How many times have I uttered those words? How many times have I stood in church on Easter Sunday, dressed up, and sang the words:

"Christ, The Lord is Risen Today! Alleluia
Sons of man and angel says! Alleluia!"

"I serve a risen Saviour, He's in the world today
I know that He is living, whatever man may say."

But does He?
Is He?

Easter is a trademark sign of spring. Flowers bloom, sunshine, the grass is green. The weather is (unless you live in a frozen tundra) generally warm.

But here I am.
Clouded in darkness.
The light doesn't seem to reach me, and I'm lost.

I feel like a failure admitting these things, because they get me the general Christian answers. "Pray to God. Read your Bible."

Do you have any idea how long I've done that?
Do you have any clue how many times I've tried?

Do you know how long I've lied to myself, clinging onto the belief I've had since Childhood?

I grew up Nazarene. We always had a sunrise service on Easter Sunday, Easter brunch, and then the regular service. We'd then (as a family) go to Grandma's and get our Easter baskets.

This year there's no Easter baskets.
There's no sunrise service.
I'll go to an Easter service, but it's because I feel I have to. I feel it's expected of me. And plus, who wants to be alone on Easter?

I feel empty. A hollowness.
So many people around me are rejoicing this weekend.
Rejoicing in the fact that Jesus was brutally tortured on a cross (note to self: never watch the Passion of the Christ. You throw up just watching clips of it).
Rejoicing in the fact that three days later, he arose and our sins were allegedly ransomed.

But yet...
maybe I'm the resident doubting Thomas.
I don't see it with my eyes.
I don't see the current evidence in my life.

I don't feel Him.
I don't even know if Him exists.

And I feel like I'm letting down the world by uttering these words.
That this Jesus? Who is He?
Where is He in my life?

I see people with strong faith, and I think
that used to be me.

I'm the girl who in 8th grade was considered to be faithful, strong, a rock. Who had an incredible faith.

And now it's gone and I've never felt so lost.


you shine up your shoes for services

I attend a school where chapel is mandatory. Now, I get that I go to a private Christian college and that it's my own fault for attending here. But that does not mean, however, that I have to agree with the polices (after all, there's a reason I'm transferring!) or like it one little bit.

Mandatory chapel. Every student here knows it well. You hightail it out of class, or you drag yourself out of bed and try to get there in time to find a seat. It's not always possible to find a seat, mind you, and sometimes you wind up sitting in a place you don't want. Half the students don't want to be there, so you find them on Facebook, texting, or even listening to iPods. The ones that want to be there are struggling to pay attention, but they can't with all that's going on.

Who thought it was a good idea to force religion? And if you miss x amount of chapels, it's CHAPEL PROBATION for you. Miss enough chapels in three semesters? Bye bye, college. You're no longer enrolled at Northwestern.

Now, I don't agree with the concept of mandatory chapel. I feel that students would pay attention, and there'd be a better turn out, if they didn't have to be there. I don't see what the point of mandatory chapel is. To build community? You can't force community. You can't make someone follow a religion.


is is true what i heard about the son of god? did he die for us did he die at all?

In a recent Facebook post, I posted the video Instead Of A Show by Jon Foreman, and a discussion came out about my recent ventures towards leaning agnostic. I suppose that it may be easier to write a full out blog post and explain things. I feel that some people may think this is a recent venture. It most assuredly is not. I feel judged for holding these views, for it's not what's expected of me. It's not what people want to hear, and it's not happy and candy coated. It's raw pain, raw anguish, and raw emotions.

To give a little background, I was raised in an Armenian church. Now, I don't think a Calvinist is right/Armenianism is right is legit in this post, and I may very well explore that later. For now, I think knowing that I was raised in that type of church (and very conservative at that), is likely somewhat relevant to where I am now.

I attend a very Conservative Christian college with a strong Bible requirement. I feel that it is, in many ways, filled with cookie cutter Christians, ones fit neatly inside a box and anyone who doesn't fit that mold is up the creak without a paddle. Even when I was a hardcore Christian, I felt judged because I don't fit the standard molds. My views weren't traditional, and were even likely unorthodox in many ways.

Here I am, at the brink of a college transfer. And here I am, bordering on agnosticism. I believe that there is something out there, some light or force that is greater than you or I. But I also don't know that that source is. I don't know if it's a divine omni-everything God. I don't know if it's a God who sent his Son to die for our sins. I don't know what I belief, and I think that's what scares me the most. After all, I was dedicated as an infant and baptize by immersion at age 14. I've never not known Christianity.

And so here I am, standing in my struggles. I feel like I've failed as a person sometimes, because I can no longer just belief. I need logic, facts, concrete proof. Being very "rough around the edges" has made me callous towards childlike belief and innocent faith, because I don't understand how you can just had it. When all the crap hits the fan, and you've been TOLD all your life that there's a God out there who wants to fix your problems and you see him not fixing it, what are you left thinking? Believing? That you've done Faith wrong? That God doesn't really care for you?

It's a complex cycle, and I don't know how to break out of it or decide on what I believe. Because I just don't know.