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...

Ian and Mommy

I was going through the pictures I took in the last few days and came across this one, which was taken minutes before Ian went in for surgery.

Today? Tomorrow?

(I'm sorry, honey, but when I saw you this morning at the hospital I couldn't help thinking about Nick Nolte's mug shot.)

Annie had a rough night. Ian still has a low grade fever and has been holding his breath from time-to-time. He can't keep anything in his stomach, so is still on an IV. They drew three vials of blood this morning but are afraid they may have clotted, so may need to redraw them.

I'm back at work. Annie's mom is with her all morning and then I'm meeting them over lunch to give them a ride home for naps. It's still up in the air as to whether Ian will come home - depends on his feeding and fever. I'll write more as I learn more...

Update 11:00am - Ian will have to stay over at least another night, so that means Annie will remain as well. The cardiologist is worried that Ian may have sleep apnea, a sleeping disorder that is common to children with Down syndrome. He continues to struggle to keep things down and that may be a side-effect of the medication he is on to clear his lungs. More later...

The latest

Silvi and I are home from visiting Ian. Annie will stay over tonight (it stinks having to spend our anniversary away from each other: "For better or for worse...," I suppose. Ian is doing exceptionally well. He guzzled a bottle of milk and was wide awake while we were there. Still no word about him coming home tomorrow, but that's the plan.

I'm wiped. A few episodes of the Road Runner on Youtube and then Silvi's off to bed. Beep, beep...

Update - 7:45pm: Annie just called and said Ian is running a 102 fever and won't stop crying and spit up all the milk he drank. The cardiologist is on his way to do a check up...

8:25pm - Annie's mom is going over to the hospital for a bit to keep Annie company. Still waiting for the cardiologist to check on Ian. Ian has finally drifted off to sleep.

8:45pm - Annie isn't feeling quite so alone so called her mom back and told her she didn't have to come to the hospital. The cardiologist thinks it could be an infection or dehydration. They drew blood to check the white blood cells and have just put in an IV. They'll know within the hour if there is an infection. So far, this is no cause for much worry, so if anyone needs to go to bed... :) I'm just surfing the web and talking to Annie tonight, so I'll probably update the blog as the info comes in.

9:15pm - Nothing yet... Silvi just cried out in her sleep what sounded like, "No more Big Bird." I'm too tired to read, so am watching music from around the world.

9:30pm - Still no word.. I don't want to call back to wake Ian... I'll guess I'll call if I haven't heard from Annie in the next 15 minutes.

9:45pm - No infection! That's great news. And the fever has almost broken... down to 99 degrees. They suspect dehydration. Annie is going to bed and I'm going to try to relax the rest of the evening to some music from Italy. Signing off.

Ian's heart surgery

If I was directing a film and trying to show externally what the parents were feeling internally, I could not have chosen a more appropriate morning than yesterday.

We woke at five to wet streets and darkness and light drizzle, bundled Ian in his car seat and drove the twenty minutes along the deserted neighborhood roads.

Ian slept and Annie and I didn't say much.

The parking garage. Skyway. Security badges.

The tension is broken by the first nurse we meet, who reminds us of the Mohel hired to perform a circumcision in an episode of Seinfeld. Shaking like she's eaten coffee beans straight from the plant, and talking entirely too loud for the situation, she has us fill out all the necessary paperwork.

A private waiting room. Another nurse. Blood pressure and oxygen levels and weight and lots of medical history questions.

We are alone. Dharma and Greg is on television. It's either that or numerous infomercials telling me how to make a million dollars while sitting on the couch eating Doritos.

We meet the surgeon. He is kind and soft-spoken and tells us that he has performed more PDA ligation surgeries than any doctor in the US. One of the benefits of living in Minnesota, home to Mayo Clinic and the U of MN medical research center.

They need to redraw Ian's blood. One of the test's they needed was not run.

We kiss Ian and give him a hug and they take him from us. We are alone again.

We find the cafeteria and eat the hospital food, which is right up there with airline food. Two people approach us and tell us they are from my parent's church and want to pray with us. My dad arrives.

Annie finds a room to pump her milk and my dad and I wait in the appropriately named "waiting" room. There is a computer screen that tells me Ian's surgery has begun. Our cardiologist stops in to update us. The screen changes to a picture of sutures, letting us know Ian is almost done.

Annie returns just as the surgeon informs me that the surgery was a success and there were no complications. We are sent by a volunteer to the wrong part of the hospital to visit Ian.

I lose my cool with her when we return from a frustrating search. (I see her later in the lunch line and apologize. She also apologizes.) A few more hallways and we find Ian.

He is doing well. We look at an x-ray of his chest and his heart is nearly half it's previous size; it is back to normal. We sit with Ian for an hour-and-a-half, then meet Annie's family in the cafeteria. All the sisters and their kids have come. It is cheery and chaos in the same moment.

I eye the portable heart defibrillator on the wall as I finish up my large roast beef sandwich and chocolate chip cookies.

We return to Ian's side. He is doing excellent. We find a private room and sleep and begin to feel a tinge of hope again.

The nurse tells us that Ian will remain sedated most of the night. They remove his breathing tube and he breaths well on his own. They tell us it is ok to go home.

Silvi arrives from her grandparents house a few minutes after we get home. She is full of hugs and joy and dancing and running. It is good to be home.

Annie calls in the early hours to check on Ian. He has cried a little so they increased his medication. Annie and Silvi and Grandma are at Ian's side now, and Annie will stay the night to feed and comfort him. I am back at work, but will take tomorrow off to take care of Silvi.

The cardiologist says Ian may come home as soon as tomorrow. I'll keep you posted...

Happy Anniversary, Babe.

Fourteen amazing years. I love you, Annie.

Surgery

Ian's surgery went off without any complications. Thanks everyone for the thoughts and prayers.

He is still on a ventilator but should be breathing on his own within a few hours.

I'll write more later as time allows. Again, we appreciate everything our family and friends have done for us...