Joy (joi) n. Intense and exultant happiness.

Can't stop moving

This video makes me feel like a kid again. It's the weekend - Enjoy!


And this video is happy-sad. I love it.

My best friends

Just as the sun was rubbing the sleep from it's eyes this morning, Silvi and I settled into some chairs at Brit's to watch Arsenal beat Manchester United. Again. The pub was packed with fans of both teams; Silvi has chosen, wisely, to throw in with her Dad's favorite, United.

Seeing so many friends gathered together made me think of my own friends. I've got a few guys I consider good friends, but my best friends in life, apart from my wife, have always been my sister and brother.

In the picture above, we're in Hollywood; it was the early 90's. My sister and I drove out from Colorado, where we were living, to meet up with my brother in LA and head down to Baja for some surfing, cheap ponchos and fish tacos so fresh they came with tackle gear in case they slipped away. And orange Fanta or a Corona - with a wedge of lime. My sister and I drove straight through, with Led Zeppelin as our wailing travel companion. On cassette. This was before the CD era. (Man, I'm old. I remember when calculators... but I digress.)

We wandered around Rosarito, bargaining with the shop keepers, stuffing ourselves until the shocks on the rented car begged for mercy. We rode some skinny, lethargic horses on the beach, listened to music, surfed (I nearly drowned, but that's another story) and fell asleep with the patio door open just enough to allow the crash of the waves give us the best night of sleep ever recorded in written history. It's in the Guinness Book of Records. Look it up.

If I took the time to tell you about all the good memories I have with my sister and brother, I would make Tolstoy look like a short story writer. We are all married now, with children, and live in separate parts of the country. Despite the distance, I think of them often, especially whenever I hear Robert Plant tell me "it's time to ramble on" or the wind whips the waves onto our little beach.

The days go so quickly. I think that's why I've started carrying my digital camera with me so often. After United hung their head in defeat this morning, all the friends filtered out into the streets, some laughing, some looking like they had just drank beer imported from Wisconsin. But I was only thinking about how I wished my sister and brother could have joined me on this fine Fall morning.

Thanking a friend

This month I am participating in NaBloPoMo, a month long writing exercise that occurs annually in November. I found out about it via my friend Isabel over at Beyond the Map. Her entry today was especially meaningful to me because, well, it's about me!

Thanks Isabel! Your words were very touching; I'm so glad we discovered each other's blogs and are able to continue to share our lives together.

Noises

We live in an apartment. An older one, but we love the neighborhood. It's the kind of place where your daughter can leave her coat at the playground and it's still there the next day. Not that my daughter will ever do that.

It took me a while to get used to all the noises in our place. The ticks of the water pipes seem to be louder on these cold mornings. We have thick walls, so the neighbors don't bother us much. And the lady across the hall who was always getting arrested was evicted last year.

We live in the flight path for the Minneapolis-St. Paul Airport. We have become expert lip readers, although I can't figure out why every time I ask Annie what time we're eating supper she says, "Sex." I mean, I know I'm all that, but c'mon, let's eat first. (And yes, I stole that last bit from Seinfeld.)

We have a cat - George. A royal name, and I think he knows it. He likes to have us watch him eat and has learned to use the toilet. I'm glad he doesn't like us to watch the latter. He has long white fur that perfectly matches the color of the carpet. He's gotten much quicker since moving into this apartment.

Our refrigerator is getting old. One of it's belts is loose, and so it squeals every so often. The sound it makes is almost identical to the little squeaking sounds Ian makes when he's sleeping.

With all the noises, I'm bracing for that "perfect storm" situation, the day when the fridge squeals at the exact moment a jet passes overhead and I leap to check on Ian only to trip over George, who is blending perfectly with the floor beneath me.

I wonder how George would feel about becoming a brunette?

Halloween 2007

(Click on the picture for a closer look.)

Check.

Rechargeable batteries? Check.

Enough space on the digital camera card? Check.

Camcorder battery charged? Check.

Extra video tape? Check.

No, I'm not going on a video shoot at work today. Just getting ready for trick or treating with my kids tonight. Pictures to follow... ad nauseum.

On Being

The Washington Post has created a great project called onBeing, a series of video interviews with people from varying backgrounds intended to help foster understanding. I uploaded the clip on Down syndrome onto Youtube. It's well worth the watch.

Magical night

I hate how words can't truly capture the essence of an experience. They always come up far short.

Tonight on the way back from a quick trip to Target, Silvi and I stopped to walk by a lake down the street from us. We live fairly close to downtown, so the Minneapolis skyline lit the water like, well, look at the picture.

Silvi ran and skipped and hopped and ran some more. We threw sand into the glassy water. Dozens of Canadian geese, taking a break from the trek south, lined the shore. Joggers ran in silence in the warm night air.

But see, the words are not enough. There were stars, lots of stars, and Silvi broke out into "Twinkle, twinkle little star" without any prompting from me. She was so - alive.

Spontaneous and unplanned, the half-an-hour my daughter and I spent by the still waters of Lake Calhoun tonight will remain with me forever.

Beautiful Fall evening

Memorable moments*

Memorable things said to us by others upon learning that Ian has Down syndrome:

• "I knew a little girl who had Down syndrome. She died when she was three."
• "My next door neighbor's daughter has Down syndrome; she's nearly blind."
• "I should have prayed for you harder before Ian was born."
• "I wonder if he'll grow up to be the next Rain man? (in reference to the savant with autism in the Dustin Hoffman film) "
• "Satan, I know you're listening! You keep away from Ian!" (prayer)
• "Isn't God so wise? That He designed it so children with Down syndrome will have medical issues so the parents don't just focus on the Down syndrome, but on things like heart problems, digestive issues, etc.?"
  

*All of these things were said in earnestness and with compassion; I try to see the heart, knowing that words only can express so much. But I wanted to get these down so as not to forget what it felt like in those early days.

Rembering my niece today

Power Lunch

I was on national television today.

OK, so I wasn't really on television, I just "happened" to walk in the background as the broadcaster for the CNBC financial show Power Lunch was on the air.

As I mentioned before, I often pop over to the Mall of America to sit in the bookstore for my lunch break and to people watch. There is usually some kind of performance or presentation on the main stage. Don Johnson of Miami Vice fame once threw me a T-shirt as I walked past him on his publicity tour. Last week they were shooting a commercial there for shoe inserts.

I knew one of the guys on the crew, so we chatted a bit. The freelance community in this town is a tight-knot bunch, and our company uses a lot of them for commercials, promotionals, or training videos.

The gaffer (lighting electrician) at the Mall has worked on quite a few films as well. He owns the actual wood chipper used in the last scene of Fargo (I wonder how he got all the "blood" out of it). He likes to tell me stories about how awkward it was when Keanu Reeves and Cameron Diaz kiss in Feeling Minnesota or how Kathy Bates' posterior is much bigger in real life. He worked the camera dolly on About Schmidt. Or how Tim Allen hogged the props after the shoot on Joe Somebody, which a lot of other actors give away to the crew.

So where am I going with this? I don't know. But as I approach 40 in a few months, I have noticed on substantial change in my view on filmmaking. When I used to stumble onto a film or video set, like I did today and last week at the Mall, I used to get really excited.

Now I just look at all the equipment and think to myself, "That must have been really heavy to set up."

Facebook

It's been kind of a downer of a few days. Probably dealing with all the emotions from last week. Or it could have been that burrito from Taco Bell. Either way, don't feel like saying much. I signed up for Facebook a few months ago, and am just starting to get the hang of it. It's kind of addicting.

If you have an account, stop in and say hi here.

The latest on Ian

Ian is a happy boy. Eating, sleeping and enduring rough hugs from big sister. His voice is slowly returning to normal; maybe by the time we see the doctor again in three weeks. His scar is healing nicely and there is no infection, thank goodness.

In a few weeks he'll begin his weekly physical therapy sessions. "The Future's So Bright, I Gotta Wear Shades."

Lessons in lort*

So I'm trying to develop more resolve when confronted by one of Silvi's terrible-two tantrums.

I'm such a pushover when it comes to discipline and my daughter. She's cast a spell on me... her beauty gives me a glimpse of eternity, to quote Camus. “Beauty is unbearable, drives us to despair, offering us for a minute the glimpse of an eternity that we should like to stretch out over the whole of time.”

But no longer will I be a pawn in my daughter's game of push-the-boundaries. No, I will be a strong father, a benevolent dictator.

Yesterday, I did not cave to her refusal to sit in her chair for lunch. She wanted to kneel on my chair, but I would not budge. In that moment, I was Gandalf, "You shall not pass!"

The first time-out. No affect. The volume of her screams increase. I try again to place Silvi in her seat, but she will not sit.

Time-out number two. The tantrum escalates, but I remain steadfast. I will win this battle. Napoleon went down at Waterloo, and so help me, this is Waterloo for the 27-pound emperor standing in front of me.

Ten minutes have passed, and her chicken noodle soup is getting cold. I am sweating and she faces me, feet planted firmly, the pacifier sucking in and out of her lips with determination.

And then it hits me. The smell, that is.

Sure enough, she doesn't want to sit in her chair, or any chair for that matter, because she has the worst diaper rash ever, and the load she is carrying down-under only causes her more pain.

My experiment is a resounding failure. I feel more like an abusive father than a strong and knowing sage.

She gets chocolate for dessert, and an extra helping of bread.

*'Lort' is the word for dung, crap, excrement, etc. in the Danish language.

How can that be comfortable?

Daddy daughter time

Silvi and I ducked out of the house on Friday night for an hour to a little hole in the wall with the best Peruvian chicken and potatos in town. (There must have been something very interesting over on her right that night.)

Doing well...good, ok

I guess there is a nerve that runs near the heart that affects your vocal cords. When they operated on Ian there was a little trauma to this nerve and his voice is very "small." Even when he throws a fit, it is hard to hear him if you're not in the same room. The surgeon assures us that it is a temporary condition, so we are not too concerned right now. It is so heartbreaking, though, to see Ian try to cry and only a little whimper comes out.

Other than that, he seems to be doing incredibly well. I would never have believed that he could go through heart surgery on a Monday and be sitting in the park on Saturday.

Thirteen years

On my drive to work this morning the radio announcer tells me that I will die thirteen years before I am supposed to.

Turns out being overweight is more dangerous than smoking, according to the latest from experts in such matters. Smokers live three years longer than us fatties.

Upon hearing this bit of information, I stopped for a large coffee and a bacon, egg and cheese bagel from McDonald's. Threw the egg and bacon in the garbage and tried to scrap away some of the cheese. Made for a very dry breakfast. No, really, I did.

When Ian was born and I went on a reading frenzy, I started freaking out. (Still am a bit, I suppose) Although children with Down syndrome live longer than ever before, one of the main contributors toward shortened life expectancies, other than congenital heart defects, is obesity.

I lead a sedentary life. I sit in front of a Mac G5 all day editing videos (with the occasional video shoot here and there) then sit in front of my computer at night to watch reruns of The Office or read about people who are out living their fantastic lives, climbing Everest in shorts or tanning on a yacht in Monaco with one of the many princes of Saudi Arabia.

But this is a serious matter, people.

Thirteen years! I have got to get out on that skateboard tonight. Or make a trek up North to get in the water. I owe it to my kids. I owe it to myself.

Of course, last night's episode of The Office is probably on-line by now...

Of Human Bondage

In Somerset Maugham's masterpiece Of Human Bondage, we meet Philip, a little boy with a severely deformed foot. One day at school he stumbles across the text in the Bible about faith moving mountains, and prays day and night for his foot to heal so that he can join his classmates on the soccer field.

No faith is more true and sincere than that of a child. Philip has asked God to heal his foot before the start of the school year. The night before classes he can hardly sleep because he is so excited about having two healthy feet. He imagines himself bounding down the stairs and racing across the soccer field.

Morning comes and with trembling hands he lifts the blankets to see - a deformed and mangled foot.

Ian came home from the hospital yesterday. Penn did not come home from the hospital a few weeks ago.

I'm am overjoyed with having my son home. (and he is doing fabulous, by the way) Ecstatic. Relieved. I am going to throw a party. But there will be an empty seat at the table.

I continue to believe that God heard all your prayers for my little boy. Did it change the course of events?

I'll let you answer.

(I highly recommend Of Human Bondage for anyone asking the hard questions on faith. An agnostic, Maugham can help believers, as he has helped me, to see beyond the easy, pat clichés that often permeate many Christian circles.)

Ian's home

Ian's corner

[UPDATED: See below]

Ian slept well and is keeping milk down. He was in some pain last night so they gave him Tylenol and he went right out. The sleep apnea test results won't be available until later this afternoon; they're a little concerned about his resting heart rate being as low as it is when he sleeps. The cardiologist will talk to Annie about the results sometime after lunch. I'll fill you in as I find out more information.

Silvi is spending the day with Grandma; she woke last night out of sorts so I let her sleep in my bed, a rare treat for her. (except during summer thunderstorms) Annie sounded much better this morning on the phone; you can see a picture of her here. (if you don't get it, reference this post)

More to follow...

Update: 10:20am - All systems are go for Ian to land at home today. The sleep apnea test reveals that he does hold his breath while in deep sleep but he begins to breath again on his own and will probably grow out of it. His lungs are still a bit "wet" so he'll have to take some medication for it. It all hinges on if he urinates or not... he's still struggling to stay hydrated.

Come on, Ian, pee... and let's blow this popsicle stand!

1:25pm - For the latest, click here or here!

Storyteller's Blog

Kim, fellow blogger from Scotland and writer on all things philosophical, and the occasional Down syndrome thought, has just started a blog called The Storyteller's Blog. Check it out if you get a chance. Here's a short story he wrote called The Flower. (one wonders what Kim would sound like without the excellent British accent. Maybe this?)

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Heading toward another night

I'm wrapping up the day at work as Annie prepares to head back to the hospital after a much needed nap. I'll watch Silvi tonight; she's been breaking into bouts of tears for no apparent reason these last few days. I know it is hard on her as well. She and I will take the night to do something fun together.

There is no change in Ian's condition... More blood tests, monitoring his breathing, still can't keep the milk down, not urinating enough, another IV, etc. I'll probably write another update before the evening's done once I hear from Annie. So long...

Update: 8:30pm - Ian is doing well for what he's been through. He's starting to keep his food down and getting some good rest. His temperature is a bit high but not quite a fever. They are conducting a sleep apnea test tonight and that will determine whether he can come home tomorrow or not. That's where it stands at the moment.

It rained all night so Silvi and I stayed in and played PBS Kids games on the computer and wrestled, before tuning in to yet another episode of Road Runner to help bring in the sandman. I'm going to crash early tonight. Good night...