Monday, November 23, 2009

Vote for Grover T!

Its time for another contest - this give Grover (and me) the chance to sit courtside at a Mavs game. We had a great time putting the video together.

The most amazing thing about this is how much he wanted to walk around on his own. It used to be where we could not get him to move or walk around without picking him up and carrying him from place to place.

Now, he wrestles with you like a fish whenever you try to get carry him. Very independent that boy now is!

Enjoy the video!

It does require that you register to vote, but the good news is that HP will not send you any spam if you ask them not to!

Go Grover!

Friday, November 20, 2009

Sunday, November 15, 2009

A New Week Begins

Grover has been on fire lately! I think that most of it has to do with the additional nutrition that we are giving him through the night, but I also think that we have uncovered a number of physical things that have been hindering him, and now we are able to provide real solutions to help him out.

Unfortunately, this has not translated directly to him mowing through a plate of salmon and green beans like his sister - but we have to think this is something that will get us closer.

I want to thank all of our friends for their support and enthusiasm for my little project - it has been a lot of fun to work on, and really helps us to put our thoughts out there in hopes of receiving any level of feedback from old and new friends alike.

We have some exciting things in store this week, we'll keep you posted. Until then - here are Grover's pictures from the 2009 Buddy Walk. Enjoy!
2009 Buddy Walk - Super Grover T and Friends!
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Wednesday, November 11, 2009

In the Interest of WHY?

There is an inherent beauty in innocence. I see it in Avery’s eyes still, yet I know it won’t be there forever. Invevitably, she’ll encounter something, somewhere, someday that makes her understand that there are different ways to look at, and understand things. In fact,I am pretty sure it has already happened. Yep. It is why I am writing this.
In Grover’s eyes I see the same innocence. With him, I think it will be a presence within him that will guide him on his journey. He’ll probably encounter many of the same things as Avery – but his ability to differentiate between situations, moods, feelings and dangers will likely not be less inclined towards self-preservation as his sister’s.

They will both learn about the Yin and the Yang.
The existence of things that are good and the bad.
The difference between the dark and the light.
The expansive gap and fuzzy area that separates right and wrong.

And their individual reactions to these polar opposites will be, well, polar opposites.
This became very clear to me today, probably by chance, or more likely because it’s a lesson I have been subconsciously learning for a little over 3 years now. A lesson that is becoming clearer, and proving a worthy challenge on both sides of the Grover/Avery algorithm.

Just tonight, I saw how powerful a negative experience can be for a self-aware toddler. She is 20 months old mind you. This clarity came to me when I saw the effect a little bit of bath soap had on Avery as it accidentally found its way in to her bright blue eyes last night. It obviously smarted something fierce. Shrieks of sadness came from her, as her trusted ally of good times turned against her. The water that she plays in every night suddenly became an enemy. Something that was fun and free of any negative association now showed that it could be scary.

24 hours later – when bath time came, she wanted nothing to do with it.
Bath time is scary.
The water hurts.

It really stabbed me in the gut to see this. Partially because I was the culprit who let the evil soap in to those powerful baby blue eyes. That is some guilt right there. I’m going to have to learn to live with it and be the strong one. But this is not about me.

It is about Avery.
It is about Grover.

The main reason for my sense of “ugh” (yes, I am a Wordsmith) is that I now know that she knows. And I saw the first sign of the Word coming from her mouth.

She already knew so much more than I give her credit for. She remembers things. Not only things, but things and the reactions they cause. She knows that the reactions can be good and bad. Knowing this leads to the Word being introduced.

It takes a lot of work and effort to make something good. We have worked very hard here to make the things that we have good and trusting for our kids. We make it so they don’t have to use the Word for clarification of something that is either good or bad.

I fear this because it is so easy.

It is so easy, for in one instant – for something, anything -everything- to be viewed in a different light. And the change starts with the Word.

For me, I began to fear the Word because of something as seemingly insignificant as a Wednesday night bath, and it opened up my eyes to the challenges my wife and I will have as we raise Avery. As she grows from toddler, to preschooler and so on, the connotation of the Word will impact everything.
It is very humbling to know that we will not be able to catch her every time something untoward approaches her on the road to adulthood and beyond. The mere thought of not being next to her as her pathway becomes a real road with real hurdles is unsettling. Not being there to provide that soothing answer to the Word, as it echoes repeatedly, for one situation after another.

It is scary.
It is a challenge.
It is an opportunity.

I think this is also hitting me because I spent the earlier part of the day beaming over the innocence and happiness that I saw in Grover T’s eyes this morning when he woke up. Awaiting me as I got out of the shower was a soggy diaper of a mess, ready to roughhouse with his old man after a night of tube feeding.
This is a kid who should be scared of stuff. He’s been through things that I can’t imagine. He should have the Word tattooed on his forehead. Have a stack of business cards that he passes out at random posing the question signified by the Word. Yet he doesn’t.

He doesn’t know the Word exists. Or maybe he does but does NOT see the use in dwelling on it.

My almost 35 years on this planet have not been nearly as eventful as what he has endured. Yet, (almost) every morning, he wakes up with a huge smile, a friendly roar and is ready to hold on to your neck and not let go.

This is not a hug born from fear.

This is not a hug that says “Don’t leave me. I am scared.”
It is definitely not a hug ripe with the emotion of a child waking from a nightmare, or in any type of mental anguish.

The hug does not even have a trace of the Word inherent in its delivery or motivation. It’s a hug that says, “Today, I am happy”. For no reason whatsoever. I just am.

Simple as that.
Happy for today.

Happy not because what will happen tomorrow can be predicted, but happy because today is today.
It’s a mindset that will obviously present challenges to Grover as he embarks on his own journey. I know that Jennifer and I will have challenges with our son that in some respects will end up in tears, both happy and sad. But with him, he might not always know the Word and its proper context. And that is the difference that makes me want to be so protective of both of my children.

As Avery grows older, she will begin to ask “WHY” more and more. When we wish she will stop asking, we will be teaching Grover to ask it at a similar clip.

WHY is that?

My hope is that Avery’s path will be driven by questions. Driven by a quest to understand. To learn, and to use every lesson to improve upon experience. Not just to ask WHY and leave it at that, but to understand the answer, and not ask it again under the same pretense.

WHY does this hurt?
WHY do I have to brush my teeth?
WHY can I not eat a certain kind of food?
WHY do the leaves fall?
WHY does the dog have fleas?

As Grover develops, he will encounter similar situations and challenges, but I don’t know that he will ask “WHY”. I think he’ll adapt. He’ll make the situation whatever it needs to be. However it needs to be. For him. Of course, it may not be an ideal scenario for a situation, and one that Jennifer and I will have to do a predictable share of damage control on. But the differences I foresee at this moment are staggering.
It’s an inverse relationship.

Avery will ask WHY her head hurts. We will try to find an answer

Grover will say his head hurts. We will have to ask him for reasons WHY.

Avery will ask WHY she can’t eat certain foods. We will have to answer that question.

Grover will not be given certain foods. We will need to teach him WHY this is.

The end result is both children needing and deserving to understand.

The non-linear naiveté that I have learned about with children like Grover is a blessing that comes with baggage. But then again, so is our ability to know the truth behind things.

In one day I have seen the pros and cons of each.

It is obviously good to know things to avoid if they cause distress. Of course the ideal situation would be to not know of things like fear and pain (real and perceived), but that is not entirely realistic.

It is also good to see daily material situations and objects in a simplistic, naïve and non-threatening manner.

But that obviously presents a maelstrom of challenges as well.

Maybe the (unrealistic) solution would be for Grover to divvy up his extra chromosome and spread it around with the rest of us. It seems utopian to have the ability to ask “WHY”, but not rely on it as a crutch, nor have it hanging over our heads like a black cloud of answers we dread.

WHY is a useful Word. It is a common Word. It is a Word that is needed for many reasons, and would ideally be avoided for equally as many.

One thing is for sure. The duality of how this Word will exist within my family, my home and my life will be challenge enough to encourage me to have the right answers, and not to be the negatively inclined answer to the question.

Not for my wife.

Not for my Grover.

Not for my Avery.

Not for anybody.

Friday, November 6, 2009

Super Grover In Training!

If the promise of a petting zoo is not enough to persuade you....check out this!

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2009 Buddy Walk is Almost Here!

Hello Friends of Grover!

This is a friendly reminder that the 2009 Buddy Walk is Sunday!

It starts at 11am with the official "Buddy Walk" stepping off at 1p.

The event is at Flagpole Hill, which is on White Rock Lake. Full information can be found here:
2009 Buddy Walk - Dallas, TX

This is a wonderful event that provides enormous financial support for the Down Syndrome Guild. This is a great opportunity to raise awareness and show your support for The Down Syndrome Guild of Dallas

The suggested donation for the event is $25 - and all proceeds from the event directly benefit the programs and services offered throughout the year by the Guild.

We had a great time last year, and know that this year will be even more fun. We look forward to seeing you!

Grover can't wait to see all of you!

Tuesday, November 3, 2009

This poem is weighing heavily on my heart today...

Chris Hood
9:12am Nov 3rd
This poem is weighing heavily on my heart today...
Wonderful Story

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