Nowhere but Here

I've been feeling pretty angry lately. No news is good news, right? Wrong. We still haven't gotten the approval we need for Rowen's treatment. I just spent the past hour with him as he screamed about how much he wants to be dead. I promise you this isn't your typical teenaged roll of the eye. It's an honest-to-goodness want and desire to not exist on this planet anymore.

When he talks about this, I get angry. Not at him, but at all we've done and been through for so long to still be here. And not just here, but worse! The past ten years floods my mind like a Mack truck. Ten years of fighting, worrying, praying, working, trying, and getting... nowhere.

I get mad thinking of all the doctors I've sat in front of that haven't seen the underlying mass chaos living inside his body. I get mad that all I've said for years is "I just don't think he ever FEELS good" and was never validated that I had my finger right on the pulse the whole time. I get angry thinking about how I've known something has been off but never had the vehicle with which to take that feeling anywhere.

Now that I do, I'm still getting... nowhere.

I'm not mad at the doctors, mind you. We are all human and can only go as far as the system we live in supports us, eh? After all, PANDAS doesn't really exist, right? Wrong. Wrong. WRONG.

I sat down with my Bible and a journal the other day for the first time in a long time. It had been so long, in fact, that I took a peek in my journal and it was exactly one year to the day that I sat down again to write. Ok, God. You have my attention.

I read the entry and it happened to be about anger. I had written "I'm thankful for battles because they always show me the King." What a cool thought, right? And you'd think my reaction would be just as cool, but... not so much. Lovely sentiment, but HA! The angry two-year old inside of me wanted to punch something. This battle has been long enough, hasn't it? Rowen even said he feels like he is running out of time. How scary is that?! I FEEL THE SAME, GOD! ARE WE RUNNING OUT OF TIME?!

My eyes were averted to the bottom of the page: "Put down your weapon of anger and pick up the Gospel." Oh. Well. There it is.

Stand down, angry two-year old. Touché, God. I think I'm getting it.

I can't say this took away all my anger, because I can go there. Boy, can I go there. The trouble is, that gets me nowhere too. So I keep going. After all, when you have a sick child you become a machine.

Some days I don't feel like I have enough to fight with, but I don't have a choice. Good thing I also wrote, "You don't need a plan to overcome. Your first love is your Savior and He is enough." Well darn, if He doesn't have a lesson in everything I don't know who does.

I keep thinking my next post will be the one that screams, "YAY! We got approval for treatment!" I thought I'd have written those words by now. That is part of the reason I write all of this. I don't want you to forget to keep praying for us. For Rowen. So please take a moment here. Help us to see the King in this battle. That's all it takes.

Another Bump in the Road

Aside from "PANDAS mom", lately I've dubbed myself the "hot mess mom" to boot. Not because I actually think I'm a hot mess, but because it's the easiest way to quickly dismiss the crazy mess we must seem. It's hard to understand a world where others are worried their kids won't make the grade when I'm literally trying to keep my son alive. I know that sounds dramatic (and I'm not one for the dramatic), but that's the way it is.

I've been working on getting Rowen the treatment he needs. It took ten years to get him the right diagnosis, so maybe I got a little too cocky thinking we'd actually get treatment in the same decade. Whoa, don't get ahead of yourself there, Amanda!

Ok, so now I'm actually being dramatic. I have all the confidence in the world we will get treated in this decade. Maybe. Check back with me in 2029.

Rowen hasn't gotten better. In fact, he's continued to decline. I've talked about him "flaring," which is the term used to describe a behavioral change in our PANDAS kids. One of my tip-offs, other than the off-the-wall behavior (and that's putting it mildly, M-I-L-D-L-Y) is when his pupils get really big. It used to come and go, but lately it's been almost a constant. The negative thoughts, anger, frustration, OCD, sleep dysfunction, and suicidal thinking is loud and clear.

I was full steam ahead trying to get the immunotherapy authorized through our insurance. I was on the phone daily, checking on the status. I know that sounds like overkill, but if you lived in our house for one day, make that one hour, you'd be on the phone too. Last week I got the call I'd been waiting for.

"I have some news," the lady told me. "Your request has been denied."

Huh? Did you say denied? Wow. I wasn't expecting that. I figured we had to get it for him, so it would have to come. Boy, was I wrong.

We are now appealing, and I'm waiting on pins and needles. It's like a full time job.
It all seems to be catching up with me though because I've had something of an emotional explosion today. I've cried in front of two people, and in between was rear-ended just trying to pick up my kids. Super. Why not pay a visit to the body shop while I'm at it all.

I'm feeling the attack of the enemy hard. Can I hope that means we are on the verge of change? I'd like to think so but I'm wearing thin. I've also been trying to keep my anger in check. I haven't been a happy camper. I'm human, I guess, but it's no fun.

So here's the take home. I'm asking for prayer. Please pray that we get this treatment and for the continued healing of Rowen. Hopefully I'll be out of a job someday and he will get to say he made it through.