How You Slice It.

Sometimes I wonder why I'm updating my blog so much with Rae updates.

Eventually all the tests will be done, the dust will have settled, and we'll be in our routine of normalcy, whatever that looks like in 2, 5, 10 years.  

Maybe it's nothing, maybe by then Rae is living a completely, 100% normal life and the memories of this time have faded.

Or maybe she isn't, and the reality of a diagnosis is a daily reminder to her.

I can't say for sure either way.

My family is dealing with this differently than I am.

Some of them pray and hope and assume it's nothing. Some minimize the reality of what we are dealing with RIGHT NOW and try to make me feel better by reminding me what we've ruled out. Some have shut me out completely, because it's easier to not talk about it than to think about what we're dealing with. Some tell me not to stress. They tell me not to worry, not to let this consume me.

This is why I write.

I need someone to say, "You know what, this SUCKS. And I'm praying," because that's all you can do.

Rae has her MRI on Feburary 12. Big S and I will meet with the neurologist Feb 26, our 3rd wedding anniversary, and get the results. If something is anbnormal on the MRI we'll figure out a game plan from there. If there are no abnormalities, my GI will have Rae put on a feeding tube for a month, then she will have an endoscopy and colonoscopy done to check her GI tract. If there is nothing to be seen from that we will be referred to a geneticist. And then, who knows what. 

Apparently it comes off that I WANT something to be wrong with Rae when I say I want the MRI to show an answer. Obviously, no, I don't want my daughter to have brain damage or something awful and serious. But I also don't want to put her through another 6 months, year, who KNOWS how long to find an answer. If the MRI is normal, she gets a feeding tube and goes down the extensive testing path. If it's abnormal, that's really sucky too, and it's something we will have to deal with.

What if in 2 years we've done all the testing, all the scans, seen every specialist, all the lab work, and she's still "a mystery"? No matter what, diagnosis or not, whether it takes a month, or 5 years, this time, this stress, no matter how much I try to surrender it to God, this IS affecting me. 

People have told me I'm handling this well.

They couldn't do it.

I'm strong.

But I'm not.

I'm really frustrated.

And worried.

And conflicted.

And scared.

And this SUCKS no matter which way you slice it.

And that's why I write, because no one else will just let me say that without telling me how I'm supposed to feel.

M