Friday, September 19, 2008

Pull up a chair...

I suppose you've already done that though. This will be long.

I always wonder if something on my blog will offend someone or if they'll be annoyed, mad, whatever by it but then, like someone else said on their blog, "It's MY blog. It's like my diary!" So true... So, there are LOTS of things I talk about on here that I do not talk about IRL(In Real Life). Or sometimes I do and maybe I make people IRL annoyed/mad/whatever too! :)

Anyway, after my post last night I sat down and read the entire book of Job. I don't know that I've read it fully before. To be honest I'm not even really sure how to articulate what I thought after reading through it because my mind is jumbled with a million different thoughts. So maybe I'll come back to that later.

This happens to me EVERY.SINGLE.TIME that we start new testing with Emeric. I'm finally realizing that. Emeric had blood work done on Monday to test for a bunch of X-linked genetic conditions, conditions for mental retardation, Autism, genetic mutations for Mitochondrial Diseases, and a slew of random, genetic mutations. Each time that we test for something I start feeling really anxious and usually the feeling lasts for a long time. I think this time what hit me was that there is nothing we're testing for that's treatable. Treatable is much, much different than curable. Even if he had something that wasn't curable if we could treat it then we'd be doing something. But when you're left with something that isn't treatable you're left feeling like you can do nothing. And I realize that whatever he does have *might* be treatable despite what the doctors say so that's obviously why we continue testing.

Emeric's seizures have been very well controlled in the last month. Much, much more controlled than they've ever been. This has made me question doing anymore testing. But, then I'm not totally convinced his seizures will remain controlled and I also know they're only controlled because he's on three seizure medications. That isn't ideal by any means. Ideally he'd be off all seizure meds. So, yes I'm happy his seizures are controlled but this doesn't mean he's "cured". It just means the meds are doing their job.

I'm sure I could go back a few months(maybe not even that long ago) and dig up an old post and just copy and paste it here because it's probably the same thoughts I'm having now. It usually is. It's just hard. Despite not having seizures there are still things, "little" things, that go on that are subtle reminders that something isn't right. And then you wonder if he's doing these things because of the medications, because of whatever is going on, etc.

Last week there were two days during the week where for a couple hour period of time his balance was very, very off. To the point where he couldn't stand for quite a while at all. Then he could stand but couldn't walk without falling, then he could walk but he'd hold on to cupboards or whatever he could grab for fear of falling. Now, he's been on seizure meds for a long time so when something like that happens I'd like to blame it on the meds but I know it isn't likely the cause.

Then, on Monday his nurse said he had a very strange "episode" that she did NOT think was a seizure but that scared her. She said he started shaking his head back and forth and his eyes were jerking but he was looking at her. She said it almost seemed like he was trying to see, like his eyes were maybe blurry or something and he was trying to better his vision. Just another one of those things you shrug your shoulders about and brush off.

Or do you?

I mean, how do you decide what to brush off and what's important. Ya know? Is it normal for a 2 year old to not be able to stand? Well, obviously not but at the same time what do you do about it? Anything?

Another issue is Emeric's blood sugars. They've been slightly high nearly each time I check them for the last few months. I don't check them often but the pediatrician encouraged me to keep record for a few months so maybe 1 or 2x a week I'll check. And they're always a bit high. So, is it a big deal or not? There's a norm for a reason but I've learned that slight abnormalities aren't really abnormalities. At least not to most doctors. Most doctors don't do anything much about something until it's pretty drastically abnormal. So, just another one of those things to keep an eye on and hope it's nothing.

It is a constant balancing act. Sure seems appropriate that our Bible study is on "Living a Life of Balance." It's a balance between knowing how much therapy to push for vs. just accepting his delays and who he is. Sometimes I want to push for lots of speech therapy knowing he's so behind and other times I want to quit it all and just say forget it, let him be. Who cares if he doesn't talk. I know what he needs. That's all that really matters.

Sometimes I think about just not giving him his seizure meds and seeing what would happen( don't worry, I won't really do this) and seeing if maybe, just maybe he's "cured".

Sometimes(ok, a lot of times) I wish would just stop worrying so much about it all and just take it one day at a time. And you know, I do that a lot of the time but like I said, anytime we start a new round of tests I'm drug back into the cycle of worrying. It's hard not to worry. It's very, very hard to take one day at a time and to trust God with the situation. There are still days I'm angry with God because I know he could just tell us what is going on with Emeric and he chooses not to. Some days I am ok with it and other days it makes me mad. Some days I can think, but this IS Emeric and would I really want him another way?

I don't know. And that's the struggle.

But, you know, I don't have answers to any of my questions. One thing I do know is that God does have the answers and the only thing I can do is put my trust in him. And that's hard. And I don't always do a good job.

But, I know that if you tell yourself something over and over again you'll eventually start really believing it. So, when I find myself doubting that God still has control I remind myself of this verse:

"You will keep in perfect peace all who trust in you whose thoughts are fixed on You.

Isaiah 26:3

5 comments:

ben and erin said...

wow... i am left with no words.
i'm praying for you tonight that God gives you His perfect peace.

A day in the life of the Simmons said...

I think that verse is perfect.

Annika said...

I am sorry you are going through this. Your previous post from your Bible Study Group was a perfect forward to this post, whether it was planned or not. God will not give you more than you can handle, lean on Him and let Him carry you through. ~Annika

P.S. How did your bread turn out? Do you grind your flour? I think I am the lazy one, I used my dough hook on the mixer to knead mine :)

Nicole said...

Annika,
The bread turned out pretty well actually.

I know you're joking about grinding my own flour. LOL No, but I did use organic whole wheat flour!

If I had a dough hook, or anything else really, I'd have definitely used that to knead it!

Jessica said...

What a tough struggle. I will pray for God to give you peace; and pray that, God willing, you will gets some answers soon, too.

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