Tuesday, December 29, 2009

It's Complicated

When it comes to the brain, it's complicated.

And confusing.

We don't really know what Elijah experiences. We do know that he doesn't experience his life the same way the rest of us do. It leaves me confused, wishing that I could spend some time inside his little body to better understand how he experiences this world.

He can see, but we don't know how much or what or when he's seeing. I'm often amazed at his ability to navigate without running into things. And at other times, I'm amazed at how much he doesn't seem to see at all.

He can hear, but we don't know if his brain is processing the information as it should be.

He can feel pain, but his brain doesn't seem to know what to do with the information. That leaves Elijah with a seemingly high pain tolerance. Which, by the way, sounds awesome, but it's not.

He can process his food, but his digestive system is a lot slower than most of us. Elijah's brain doesn't tell his stomach to empty as fast as it should.

He can communicate, but not with speech. It's often in subtle, unconventional ways and you might miss it if you're not paying attention.

He can interact with kids, but he doesn't know what to do with them. He often scares them and my heart soars and breaks to watch him trying.

You see? It's complicated. Elijah has a lots of can-dos, but they're all complicated by the brain's inability to know what to do with the information, which frustrates me. The brain is always changing, forming different connections. That knowledge gives me hope. But, the brain in it's complicated-ness makes life frustrating. It affects every single aspect of a person's life, from digestion to speech, from mobility to vision to hearing. Every.single.aspect. Whatever you do, protect those little noggins.

Because when the brain is hurt - it's complicated. And confusing. And sometimes frustrating.


Tara Bennett said...

Wow, can I relate to this post. Although many of the aspects of my daughter's "encephalopathy" are hurtful, frustrating and confusing, I find her communication truly delightful. Okay, there are times of frustration.... But when I do understand her, my heart just leaps with joy! There is nothing like it.

Jennifer Thayer said...

I've been kicked off every time I try and open your blog or comment the last few posts!! URGHHH!
I finally got through today, I prayed and celebrated for Elijah and glad to hear the results of your further tests.
I know how complicated it all can be. He is able to do so much, yet to the norm, it appear so little. Baby Steps; the caterpillar must take to be the butterfly, right?

Anonymous said...

right, the brain is very confusing.

I've written a few times on your blog and love reading it. Elijah reminds me so much of my little guy, who's 14 months old now.

I know where you're coming from, lately we've been on the road of 'what does he understand?' is it a speech issue, a hearing issue or just isn't quite there yet... I've been thinking that at one point I was tossing around what disablity I would trade for .. odd thought, I know ... would I rather him walk or talk? would I rather him be able to feed himself or understand me.

Now I know, or at least have an idea, that Eric will walk and run someday. But speaking and understanding is still a mystery. What connections his brain is making and what it's not.

sorry for the long post ... I just can't stop thinking that I want him to be able to understand me and talk to me! and hope, hope, hope those connections are being made in his cute little head.

- Susan

Lisa said...

I know I'm late in responding, so I don't know if any of you will read this, but here it goes...

Tara, I'm always delighted when I understand what Elijah is trying to communicate too.

Jennifer, I'm not sure why you'd be kicked off!!??? Thanks for the prayers.

Susan, I totally get what you're saying. Feel free to write as many and as long posts as you'd like. I like to read them. :)

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