NEW DIGS

After much contemplation I have decided to take this blog in a different direction.

I know it is a big pain in the hiney to change your links and blogrolls, but I seriously think it is time to change.

So, with out further ado... Please join me at

LISA'S RAMBLINGS

Blue, Red and Green

It's been an emotional couple of weeks for me and though I know really what is at the root of my heartache that doesn't really make it all better. I wish I could control how I felt. That I could stop the swirling of emotion that presses forward at times.

Ethan started school again. Last Thursday was his first day, and tomorrow will be his second. I feel sternly about this little adventure. His teacher, Miss Kari called as soon as he departed on the bus to let me know that he did amazingly well. You could hear the excitement in her voice as she exclaimed that it had been successful.

While I feel grateful that it was, I have reservations that far exceed my hopefulness.

I keep insisting in my mind that we can not endure the same element of anxiety that occurred the last go round. My heart is hoping beyond all hope. I suppose we will see what his tolerance level is. Maybe some of the things we have been doing with him, have taken root and will truly make a difference. Perhaps he is growing up, and change isn't so bad for him. Or it may have been pure luck.

More often than not, I am happy with Ethan. This time of year, especially brings out the anger in me in regards to his afflictions. I want to play the "fair" card or the "why" card. It's a roller coaster I know my readers are familiar with because the same ups and downs have been with me since the get go. I am not sure why such an even field is so hard to stay on, but I often find myself on steep hills looking down or at the bottom climbing up. While I have read this is normal, it is frustrating. I am constantly irritated with how unregulated my emotional status is.

Also, as of late, I have been jealous. Shocked? Oh I am sure you are. (sensing the sarcasm) Why is it that I feel like Ethan is the "worst" off? Others that have struggled with similar issues seem to be progressing SO well. It is so frustrating to compare. So why do I do it? OH MY HELL, who knows. I try to stop.

Please don't misunderstand me. I really am glad, that others progress. Sometimes, I just wish it would rub off a little.

Lickity Split-

Mister Man is growing up.

It's incredible. Is it so bad, to just want him to stay the way he is now? *sigh*

An Obama-nation

YES!!!

WHAT HE SAID!

Conversations, An Open Dialog

Since my post about medication management, I've had a few conversations with people, or random email asking me or delicately bringing up what could be a sensitive subject.

Basically it boils down too, Is having a shorter life expectancy or life span for Ethan, such a terrible thing? With his limitations, is his turn on earth one that has to be endured rather than celebrated. Not for those of us, who struggle to provide him with what he needs, but... is HE better off here?

These are hard questions. These are thing things that cross my mind in the middle of the night, or when I am a nervous wreck trying to figure out what ails him or how to placate him. I think they are perhaps unfair questions, but valid. (If that isn't an oxymoron, what is?)

So... knowing what I know now, would I still make the same choices about life support, invasive medical interventions and the best technologies in the world, to sustain his life?

Personally for ME- I would say, with out a doubt. For me, yes. For me, I would do it all over again in a heartbeat. Paul on the other hand, who is far more analytical and evidence based in thought, than I am- might not agree.

I don't know what kind of deal we made in heaven, Ethan and I.. and the answers to all those cosmic questions are left dangling out there in space, with out a response... but at the end of the day, I really truly would not change any of those decisions.

As far as ... his life span and medications vs non medications ect. My thoughts have been focused on that lately. I really think that to keep my end of the bargain, I need to make Ethan's life as worry and pain free as possible, but still allow him the opportunities to grow and expand his horizons so that he can be as viably successful as his limitations will allow.

I think that Ethan might just have something to say in his last hour. I know, as he gets older that his challenges will be more pronounced. I understand that for us as care givers it is only going to get harder. And yet. These lessons we are learning are incredible. As much as I can write about them here, it is something all together to live them. What would our lives be like, with out him?

But, what is his life, for him? He is often uncomfortable and can't communicate why. He is sometimes sad and ornery, with out a way to define or pin point what it is. Yet, this is the only life that Ethan knows, and I am not sure that he suffers the way we do, when we see what we view as his restrictions.

It is very difficult. The questions are difficult.

There are also many "what if's"

What if, we learn more about the brain, and someday there are interventions that can help E? What if someday, a light turns on, and he gains capabilities that we can't even comprehend for him? What if... what if...what if...

Someday, we'll know all the answers. And these days and questions will seem far away and trivial. In the mean time, we'll just put our best foot forward, and make choices and decisions for Ethan to the best of our capabilities.

And someday- we'll know.

Random

• School started today. I cried
• Victoria had her last, "first day" of high school. Again, I cried
• I've been into ice cream lately. Though the salty tears tend to make it less yum (are you getting the theme here)
• They want E to come to school three days a week this year. Tears again.
• E has been fussy all weekend.
• Do you think it was the Popsicle?
• I've been mourning this day, all summer.
• It's my most favorite time of year, the harvest time.
• We had a really neat dinner last night, to celebrate the start of the school year.
• Every time Victoria starts to talk about college, I get nauseated.
• When I signed her graduation info, I cried.
• When we bought her new sketchers, I cried.
• Hum, maybe not in a healthy place?
• Gosh. Maybe I need medication.
• Maybe I am having an identity crisis?
• I have started to pick out water polo kids, that need support, so I can continue to attend the games.
• I attended a missionary farewell on Sunday. It was an amazing experience.
• Our family friend is has his this next Sunday. I can't believe it is already time for them to go.
• This is totally boring! I am sorry!
  

Retard Brigade at the Parade

I know that isn't the nicest title. I know it isn't a popular word anymore. Sometimes I think, that political correctness is flat out silly. The word retard is not a bad word.

However- because of the connotation of the word, used by many to describe people who are choosing to be foolish or silly, hence comes the negative vibe.

I think we have come through several new words. Disabled, impaired, a child with special needs. They all mean the same thing.

It seems reduntant to me, to keep changing the vocabulary. Once you do, the connotation follows, and then you have to change the language again.

However, I digress.

So, I toted my family to the Box Elder County Fair and Rodeo Days Parade yesterday. Amazingly enough- Ethan did quite well. There was not screaming. No yelling. No kicking or crying. He sat on my lap, giggled, laughed and was in general a pretty darn good kid.

We sat back, a way from the parade front, in the shade on the park lawn. Though our view wasn't perfect, it was nice enough and the weather was perfect. Since my Mom was with us, we had two wheelchairs and the rest of us just sat in lawn chairs.

This is the perfect small town parade. About seventy entries and every single one of them throws candy. It is so neat. While we didn't have anyone that threw candy all the way to us... there was one vendor that made sure we got treats.

Kent's Market Place, our local Western Family grocery store provided the crowd with Popsicles. And I mean, the entire crowd. Employees on a trailer with huge dry ice bins, threw out the frozen treats, to other employees who walked in and out of the crowd making sure that everyone got one.

I was touched beyond measure, when they included us in their quest. A neat gal offered me one for Ethan. I know this is such a little thing, really. He was sitting on my lap, but you can clearly tell these days that he has issues. He bends over funny and is always skewampas. Yet, it feels so ... nice to be in included in *normal* things. She didn't pause, stare, or look at us funny. She just beamed a beautiful smile and handed me a Popsicle.

Remarkably, Ethan even compounded my excitement by nibbling on the cold grape goodness. He gummed it with his mouth and licked it a little. I broke off bits and chunks of it and he gnawed at it, with glee. I was covered head to foot in sticky purple goo, but it was more than worth it.

Delightful.

It is always the silly little things that give me hope. That help me find... the courage to keep moving forward.

Hope is a priceless commodity. I am so grateful, when I find it.