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Archive for February, 2013

Family

Friends are the family you choose...and that choose you.

Friends are the family you choose…and that choose you.

They say you can’t choose your family…I beg to differ.

For those who don’t regularly follow either Jess or me on the blogosphere or elsewhere, it’s been a tough few weeks – we found out that Brooke has been suffering from brain seizure activity and that the seizures may be causing some language loss for our baby.  Although we have seen quite a bit of horizontal growth in her language over the last year, her vertical development has essentially stagnated, if not taken a step backward.  We are in the middle of the process of trying to figure out what is going on.  An MRI performed last week showed no abnormalities in her brain structure.  We are still waiting to hear what her 24-hour EEG revealed.

It’s been difficult and I wrote last week how many of YOU have been our Sunlight during this confusing time.  Part of my personal therapy has been to run – this streak could not have come at a better time for me; some runs have been full of deep thought, others have been an opportunity to simply shut out the outside world and go.  As you may know, I have run every run running the Charity Miles App.  Using the GPS in your smartphone, it tracks your run (or bike ride or walk) and makes a small donation for every mile that you cover.  I’ve written more about the app and Charity Miles —>Here<—.

I always thought that Gene (the founder) was a pretty good guy.  I liked his story and I liked what he was doing.  What I didn’t truly realize was that this guy is paying attention and he truly cares.  When Jess and I first found out about Brooke’s brain seizure activity, we were devastated and that devastation was reflected in my posts – Gene tracked my phone number down through a mutual friend and called me to make sure I was okay.  This isn’t a guy I know.  We have never met, but he cares about his Charity Miles team.  I was floored.

But it didn’t stop there.

A few days later, after finishing up a run, I went through my routine of logging my miles, first through the Charity Miles App.  The way it works is that after your run, in order to have the donations sent to your charity of choice, you must post that you ran using the app on Facebook and Twitter.  Charity Miles always has a few hashtags thrown in, I assume to draw attention to groups they are working with.  I always add the #AutismStreaks hashtag and the day before hitting send.  On that particular day, I was surprised to see another one: #TeamLuau

I blinked.  I didn’t think I had added that.  No, I’m sure I didn’t do that.  Then I wasn’t so sure – sometimes I do these things on auto-pilot.  I did a twitter search of the #TeamLuau hashtag – and there it was, on every Charity Miles run done for Autism Speaks.

I was speechless.  I tweeted Charity Miles that I was speechless, honored, thankful.

Their response?

Simply put?

We’re family.

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Week 8 brought a 24 EEG and an MRI for the little one – by Friday I was cooked and could muster only a mile.  I’m not sure whether all the visits to the hospital or my lack of sleep affected my ability to think straight, but I also seem to have registered for a 100-mile race come June.  Good thing I’ve been doing all this base building!

Friday night would have been fantastic in the moonlight, but all I could muster was one mile...

Friday night would have been fantastic in the moonlight, but all I could muster was one mile…

Week 8:
February 19 – 7.0 miles 59:38 8:31 pace aHR 133
February 20 – 8.0 miles 1:00:33 7:34 pace aHR 156
February 21 – 8.0 miles 1:11:45 8:58 pace aHR 126
February 22 – 1.0 miles 10:00 10:00 pace aHR 147
February 23 – 9.0 miles 1:08:59 7:40 pace aHR 138
February 24 – 3.0 miles 24:59 8:19 pace aHR 125
February 25 – 7.0 miles 1:01:28 8:47 pace aHR 122
Week 8 Total – 43.0 miles

#AutismStreaks Total – 293.0 miles (as measured by Garmin 610)

***

If you want to start your own #CharityStreak pick up the Charity Miles app and start raising money for your favorite charity simply by walking, running or biking:

Get the Charity Miles app:

  • Download App
  • Download App

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A little less than a year and a half ago I crossed the finish line of the Vermont 50 – fifty miles through the mountains of Vermont.

It.

Was.

Miserable.

When I crossed the finish line in just over eleven hours, I made a bee-line for my buddy Doug (the guy who had convinced me this was a good idea) and yelled a string of expletives at him.  I was never going to do this again, I concluded.

Ultra-Marathon could now be checked off on the bucket list – time to move on.

Never again.

About a half hour later, I looked over at Doug and said something along the lines 0f, “you know, if we had actually done any kind of training before this, we probably could have gone sub-10:00.”  I started thinking of doing it again the following year.

As life will often do, scheduling got in the way and I could not participate in last year’s Vermont 50.  I told Doug that 2013 would be the year of the sub-10.  I hadn’t signed up for any marathons save New York City, so I planned on putting in some miles early and then getting serious about training over the summer.

Then #AutismStreaks began.  My mileage through seven and half weeks hasn’t been huge, but I do feel like my legs are coming back – I may be slower than I once was, but I still enjoy time on my feet.  Earlier this week I went running with my Super Sunday 5 running buddy JB.  He is probably one of the easiest people to run with.

Yesterday he posted this on Facebook:

JB's Facebook Post...

JB’s Facebook Post…

***

After Vermont and my experience at Around the Lake earlier that July, I swore I would never run a 100-miler until I had the ability to cover that distance in 18 hours or less.  It wasn’t a speed issue, rather it was I had come to dislike racing at night.  Around the Lake was miserable, absolutely miserable.  The idea of running through the night, which, at my speed, I would have to do to cover 100 miles, did not appeal to me at all.  I knew that at best I could maybe cover 100 miles in 24 hours, under ideal conditions, and the laws of time and space dictate that if that is the case, I would have to run through the night.

Nope.  I wasn’t ever going to do that.

Wasn’t.

Going.

To happen!

***

To humor myself I clicked on the link – what kind of craziness was JB getting into?  100 miles?  He’s crazy!  Trail running madman he is.  That’s just…oh, hey, look – it’s relatively local…and it’s flat…only 3000 feet of climb for the whole 100 miles…what was Vermont?  over 9,000 feet over 50 miles?  that’s six times the elevation per mile…and, whoa! $60???  that’s CHEAP!!!

I shook my head.  What the HELL was I thinking???

No, no, no, no, no, no, NO!!!

I left JB a comment: Are you entered?

JB: Yes sir.

Me:  Do you have a goal time?  WHY THE HELL WAS I ASKING??? And is 3000 climb for 100 miles or for 25 miles? STOP ASKING HIM QUESTIONS!!!

JB: its for the 100, and I think finishing would be a great goal! its pretty damn flat

My response?  I am not actually considering a 100-miler…I am not actually considering a 100-miler…I am not actually considering a 100-miler…

***

Over dinner I mentioned to Jess that I might be thinking about running the TARC 100 – I began with I know I said I would never do one of these things, but you know, it’s relatively local and it’s flat, and JB and Doug are running it and it’s really, really inexpensive and I know I said I would never do one of these things but…

She looked at me as she interrupted me, You know how when I tell you I’m going to buy a pair of boots and I start to come up with all kinds of reasons why I “need” them when I really don’t and you roll your eyes as if to say just go buy them?  I’m rolling my eyes…you’re nuts, but go ahead.

90 minutes later, this happened:

...what have I done?

…what have I done?

GAH!!!

On the bright side, if I’m still #AutismStreaking at this point (I believe it would be day 165) that will be a lot of Charity Miles!

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struggling through the news...

struggling through the news…

It was another week filled with run therapy – the news of Brooke’s brain seizures made the runs this week harder but all the more meaningful to me.  Ending Week 7 with a fantastic 12-miler with my bud JB was just what I needed!  Thank you again for all of your support this week.

Week 7:
February 12 – 3.0 miles 24:05 8:01 pace aHR 140
February 13 – 5.0 miles 37:46 7:33 pace aHR 138
February 14 – 6.0 miles 43:12 7:12 pace aHR 151
February 15 – 10.0 miles 1:17:46 7:45 pace aHR 132
February 16 – 1.0 miles 6:45 6:45 pace aHR 139
February 17 – 6.0 miles 49:14 8:12 pace aHR 134
February 18 – 12.0 miles 1:33:07 7:45 pace aHR 138 (hit 250 miles YTD on the nose)
Week 5 Total – 43.0 miles

#AutismStreaks Total – 250.0 miles (as measured by Garmin 610)

post-12-miler on Monday with my bud JB

post-12-miler on Monday with my bud JB

***

If you want to start your own #CharityStreak pick up the Charity Miles app and start raising money for your favorite charity simply by walking, running or biking:

Get the Charity Miles app:

  • Download App
  • Download App

Read Full Post »

It’s been a rough, tough couple of weeks here.  For those that don’t follow me or Jess on Facebook or Twitter, we received news earlier this week that Brooke has in fact been suffering from brain seizures.  Jess and I were, despite preparing ourselves for the possibility, completely rocked.  The news from the neurologist was followed up just hours later with more difficult news from Brooke’s neuropsych (or as Jess calls him – Dr. Dreamy).  Her verbal IQ had taken a frightening tumble over the last year, dropping her into the bottom one percentile of her peers.

Yeah…Jess and I walked out of there a complete mess.

That was Wednesday night.  Thursday went by in a complete blur.  Jess stayed home to prepare for Brooke’s team meeting at school, while I drove her around to attend to those preparations.  I just wanted to get to the end of the day and go to sleep.

Sleep didn’t help.

I woke up this morning just as distraught, just as angry, just as stressed.  So many of you have sent words of love and support and offers of connections to doctors.  Up until today, that had been my lifeline – I can’t thank you enough.  I know there are people out there who say that social media has made the world a colder, less inter-personal place, but after what you did for me and Jess Wednesday night and yesterday, I could not disagree more.  Like I said, you have been my lifeline.

But then something else happened today.  Instead of running angry as I have for the last several days, I decided to run comfortably; to purposely run at a slower, steadier pace.  I kept my pulse in the high 120’s and just glided for 5 miles before turning up the pace a little.  It was meditative, contemplative, reflective.

At the end of the run I took my usual “#AutismStreaeks Day Fill-In-Blank” photo.  The sun was behind me, which I hadn’t realized, and created a burst across my face in the photo and it struck me – even the darkest of nights must eventually give way to the sunlight.

...even the darkest night must eventually give way to the sun...

…even the darkest night must eventually give way to the sun…
#AustismStreaks Day 46

 

Brooke will get through this, as will Jess, Katie and I.

Thank you for being our sunlight.

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Six weeks already? Wow!  This was a tough week – between Brooke’s EEG and a storm that finally delivered what the weathermen had promised, it has been a tiring week.  That said, there were a couple of really good runs – Thursday’s 10-miler proved to be one of my best efforts of the year (the last 2.5 miles coming at a 6:44 pace) and that was preceded on Wednesday by a very zippy 6-miler that was way faster than last Sunday’s race.  Running in the middle of Nemo was an adventure to be sure, followed the next morning by an ice cold run – 9°F!  Yikes!

All in all a good week of running despite a tough week at home.

Hope you all got your miles in this week!

-Luau

Week 6:
February 05 6.0 miles 52:18 8:43 pace aHR 123
February 06 6.0 miles 42:03 7:00 pace aHR 149

250730_10151510848908755_151514334_n

Day 37 – a zippy 6 where I just missed going sub-42

February 07 10.0 miles 71:11 7:09 pace aHR 147

Day 38 - Best run of the week - run on very little sleep - last 2.5 miles were at 6:44 pace!

Day 38 – Best run of the week – run on very little sleep – last 2.5 miles were at 6:44 pace!

February 08 3.0 miles 24:14 8:05 pace aHR 129

Pre-Nemo Run

Day 39 – Pre-Nemo Run

February 09 5.0 miles 45:32 9:06 pace aHR 134

Day 40 - 5 Snowmageddon Miles

Day 40 – 5 Snowmageddon Miles

February 10 2.0 miles 16:55 8:58 pace aHR 156

Day 41 - Post-Nemocalyptic Run in 9° temps

Day 41 – Post-Nemocalyptic Run in 9° temps

February 11  5.0 miles 40:00 8:00 pace aHR 135

Day 42 - 6 Weeks in the books

Day 42 – 6 Weeks in the books

Week 5 Total – 37.0 miles

#AutismStreaks Total – 207.0 miles (as measured by Garmin 610) – puts me 3 miles behind my mileage of at least 5.00 miles per day.

***

If you want to start your own #CharityStreak pick up the Charity Miles app and start raising money for your favorite charity simply by walking, running or biking:

Get the Charity Miles app:

  • Download App
  • Download App

Read Full Post »

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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