Posts Tagged ‘run luau run’

My reason...

My reason…

It’s been a tough week at Chez Luau – last Monday Brooke came down with a headache that became so bad that we decided to take her to the ER. The doctors in the ER ruled out stroke and meningitis, but could not figure out what had happened other than to say maybe she had a virus coming on and her system went “haywire”. Not very satisfying. They could not rule out brain seizure.

That was followed up with an EEG on Thursday and a meeting with a neurologist later this morning.

For whatever reason, autistic kids have something like a 25-40% chance of suffering a brain seizure before/as they enter puberty. It has loomed large on the horizon for us, but last Monday’s headache, followed by falling asleep right after dinner on the couch and certain behaviors while Jess and Brooke were waiting in the ER brought those concerns into focus.


On Saturday, while out running 5 miles in the middle of the Nemocalypse, I came to another “why” moment. Not the “why me” kind of why; no, the “the reason why I run” kind of why.

After 5 miles during Nemo...

After 5 miles during Nemo…

The autism community is split when it comes to topics of science and research, especially when talking about an organization like Autism Speaks. Jess has written extensively about the power dynamic between autistic people and their parents. Parental advocacy can look very different than self advocacy. Along with its awareness campaigns, an organization like Autism Speaks funds quite a bit of research into the possible causes of autism. Some people talk about possibly finding a “cure” for autism through this research.

When Brooke was first diagnosed with autism, the first thought that came to mind was how do we cure this? This thinking does not sit well with many of the self-advocates because, well, to put it simply, they don’t feel the need to be “cured”. Jess has made this point more eloquently many times over, but the point is this – how would you feel if someone was constantly telling you that you needed to be cured of something that was intrinsically you? I don’t think it would feel so good.

But that being said, I still run for Autism Speaks and I still raise funds for them – along with trying to raise autism awareness, this whole #AutismStreaks thing has essentially been a fund raiser for them – and it is situations like this past week that have reinforced my belief that research is necessary, that funding for science is a must.

What we find out regarding Brooke over the next few days is almost irrelevant in the big picture. We will find out that Brooke either had a migraine or had a minor seizure or that her system is completely normal and as the doctors said in punting Monday night, her system went haywire under stress. The bigger picture is that our kids DO suffer from a significantly higher incidence of seizures. Science can help up determine why, how and maybe even what we can do to prevent those seizures.

There was a time when, if offered, I would jump at the offer for a pill that would “cure” Brooke of autism…as a parent, I would be lying if I said that I still wouldn’t consider it, but the truth is, I know there would be hesitation on my part, because I wouldn’t want to lose WHO Brooke is. Ultimately, it would have to be her decision, not mine. But in the meantime, I feel like with proper funding, science CAN realistically attempt to understand why brain seizures are happening to our kids. Even if there is no project currently exploring the connection between our kids and brain seizures, the history of science is filled with accidental discoveries – so it’s not unreasonable to think that as scientists delve into the causes of autism, they may stumble onto the cause of these seizures.

It’s another reason for me to run – another reason to keep #AutismStreaks going even when my legs or lungs or brain tell me it’s time for a rest – another reason my heart continues to say Run Luau Run!

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I am running and quite frankly I’m a little disappointed in CNN.

Tonight is the first official debate between 2012 Presidential Nominee hopefuls for the Republican party. Forget the fact that I’m not a Republican, but come on CNN, not even a phone call or an email or a tweet to ask my opinion on the candidates?

Some of these guys JUST started running. I’ve been running for over 2 years!!!

Okay, so maybe I haven’t officially “officially” announced my candidacy for the top office of the United States, but come on!

Each and every one of these Republican candidates has a broad, if not very vague and general platform they are running on – cut taxes, cut spending, rescue the economy – but none of them is specific on HOW they are going to do that!

And don’t even ask them about health care. The only thing they can throw out is repealing “Obama-care”.


I’ve been running for over 2 years and my platform is fairly clear. Better living through better living!

  • Get This Nation Healthy – incentivize exercise and healthy eating and change the mentality of big corporations so they will want their workers to be as healthy as they can be.
  • Lower Insurance Costs – healthier citizens means lower health costs means lower insurance cost.
  • Increase Production – healthier workers means more production per man-hour.
  • Stimulate the Economy – bigger production and spending less on medical costs and insurance means more money being spent on goods means more demand means a healthier economy.
  • Regain Our Status – once the economy is clicking again, the United States will again be THE place everyone wants to be.

It can’t happen overnight, but with the right attitude and a strong desire, we can once again be the lean, mean powerhouse machine. With clear eyes and full hearts, we can’t lose.

Yeah, I may not be up on international politics, and I can’t say I really know much about how to run a country, but I DO know that we need to take care of our own people and give them the tools so they are able to succeed on their own. With some hard work, a lot of sweat and a little knowledge, we can get this country back in saddle!

Better living through better living – that’s the Run Luau Run platform.

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Now, who wants to be my running mate?

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So last night a good friend and fellow runner informed me that the Boston Marathon had closed registration for the upcoming 2010 event.  This was two months before the record closing from last year.  I had been convinced that I had until mid to late January to run another marathon in an attempt to qualify for this year’s race.   Disney or Miami – those were the two marathons I was looking at.  Based on my performance during the first half of the Manchester Marathon I thought I just had to run smarter and I would be fine.  Despite my awful crash and burn in the second half, I felt like I had learned a thing or two that I could take into the next marathon.

But then my friend emailed me and told me the news.  My first reaction was, “Okay, I can’t qualify for this year’s Boston.  How else can I get in?”  There are many charities that are awarded bib numbers that I could work with.  My friend who emailed me is running for the American Liver Foundation (if you have a moment, please check him out at http://liverrunner.blogspot.com ) and he suggested that there may be a few spots left on his team.  He also suggested running for Dana Farber.  Another running friend mentioned the Doug Flutie Foundation.  I went online and began checking out the various charities, wondering which would offer the easiest path to an official number.  They are all good and well deserving charities.

I never got past the splash pages for any of the charities, some of which are somewhat close to my heart.

The truth is I started this journey, this quest if you will, with one thing in mind.  I wanted to run a marathon and qualify for Boston.  I wanted to be able to say, “I am a Boston Qualifier!”  A few months back I saw a movie called “Spirit of a Marathon”.  The movie followed the paths of several different people, of various running skills, as they prepared for the Chicago Marathon.  One runner in particular put a lump in my throat.  He had run several marathons, always with the hope of qualifying for Boston.  He had had a good training cycle and thought that this year might be the year.

At one point he looks at the camera and says, “there are different levels of runners.  There are runners.  There are marathon runners.  And then there are Boston Qualifiers.”  I got chills hearing that.  My eyes even got a little leaky.  I was completely crushed when later in the documentary he injured himself and was unable to run.

I want to be on that level of Boston Qualifier.  I may never reach it.  I know there are ways to get in that are just as honorable.  There is nothing wrong with running to change and save lives.  It is just not the path that I want to take.

So now I know that I will not be running Boston in 2010.  I will still run part of it.  I plan on pacing my friend through parts of the race.  But I hope to still run Disney in January and run a qualifying time to apply to the 2011 race.  Just like a marathon itself – you get hit with bumps and challenges.  The key is to power through them and achieve the goal.

That is my quest.

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