Monday, December 31, 2007
Sunday, December 30, 2007
Saturday, December 29, 2007
That's kind of how I feel these days: Our family will file for personal bankruptcy protection on Wednesday.
I've gone back and forth as to whether to write about this; it would be so much easier to hide it from others. I decided to go public with this failure - and it is a failure - for a few reasons.
First, I want to be open and truthful in my dialog with others. "Appropriately transparent," as my dad would say. Declaring bankruptcy is a major event in my life, one that shapes me and affects my relationships and those of my family. To deny it's impact would be untruthful and a little deceptive.
Next, I know there are many others who are reading who are in similar financial straits. These last months of surgeries and tests and doctor's visits have hit us hard; these latest bills are the final bursts of rain that have forced the river to flood over the levies. We were bailing water before Ian's medical costs. It's time to put down the pails and move to higher ground. And so I share this so that others who face similar situations will not feel quite alone.
Finally, a shared burden is much easier to carry.
I've never been very good at finances, but that's not why we are where we are. About five years ago, when I lived in Seattle, all my years of moving and loss and depression caught up to me and I was unable - or unwilling - to work for the better part of a year. Months of insomnia and aimless wandering. We lived on credit cards, using them for cash advances and to pay for groceries and rent. I dropped out of the courses I was taking toward getting a Masters degree.
Ever since then, Annie and I have been patching holes in the dike, trying to hold back the flood waters until my new business venture started generating enough for us to pay back our creditors.
I am fortunate. I make my living in the field that I love, creating videos. Sure, there is so much more that I want to do with my talents, but I know that these last twelve years of work have helped turn my hobby into a profession. Some people in my business make a good living, but most of us struggle to make ends meet. I don't plan to change professions any time soon; I do hope to one day be able to provide a little more financial security for Annie and the kids.
I've got the name of a good bankruptcy lawyer from a lawyer friend that I trust.
This isn't quite how I intended to ring in the new year.
Friday, December 28, 2007
One of the things that I love most about his films is how he captures those feelings of being lost in a world that often appears quite absurd. He does so with wit and playfulness. Here are a few clips:
Palombella Rossa - The Pool
Palombella Rossa - The Car
Caro Diario - The Cafe
Thursday, December 27, 2007
Ian: Hey Dad, we haven't checked out the new GI and Chest X-Ray machine over at Children's Hospital yet, have we?
Me: Hmm, I think you're right! Don't know how we missed that one. What say you and me make a day of it, eh boy? We've got nothing better planned for this beautiful Thursday. I'll buy you a nice, thick Barium milkshake.
Ian: So, where do you take Silvi when you go out for your daddy-daughter dates?
Me: Put your boots on, son...
Wednesday, December 26, 2007
It's time to say farewell to another year. I think it's important to set aside a little time to reflect on the events that shaped the past twelve months; they are unique and never to be repeated. Some of these happenings were filled with much joy - summer walks down by the lake, a visit from my sister and niece, weekends with my mom and dad, gatherings with the in-laws, a family vacation to Colorado, little day trips along the winding St. Croix River, skateboarding with Silvi and her metamorphosis into a vibrant young lady, fourteen years with my wife, the birth of my son, and of my nephew.
If you've spent any time with me here, you know the hardships. Hearing that my son has Down syndrome has been one of most jarring crossroads of my life, and I still feel somewhat stuck in the center of the intersection, gazing down roads that lead to places unmarked on my current map.
As these final days of 2007 disappear into history books, video clips, photo albums and faltering memories, I say goodbye to a life that once was to make room for a new path, unknown and more than a little scary. I am learning - slowly - to welcome this new life and the son whose smile wipes away all that may be lost.
It is not, and will not be easy. Annie and I argue more often, our evenings tinged by attempts to escape the ever-present responsibilities through reading or movies, or spent planning doctor's visits, coping with the growing financial burdens, and learning to help our son find his way in a world that does not really want him.
Christmas is over. To be perfectly honest, I am glad. It's hard to put on a Christmas smile when what you really want to do is escape into the darkness of a movie theater and drown your sorrows in a trough of over-buttered popcorn. There were a few moments of true joy sprinkled throughout the last few weeks: watching Silvi's face as the lights of the Holidazzle parade danced in her eyes, hearing her proclaim, "What a wonderful day!" after seeing the falling snow, Ian in his best outfit on Christmas morning, watching Scrooge (the only proper version, in my opinion) with my parents, laughing at Elf with my in-laws.
But I'm ready for the fresh start of a new year. I have many hopes for this next year; but most of all, I look forward to twelve new months with my beautiful wife and captivating daughter and son.
Thursday, December 20, 2007
More later... unless the world really does come to an end on December 31st.
Tuesday, December 18, 2007
Today we talked about words. About "spiritual speak."
When I lived in Colorado, a friend of mine died while rock climbing. He was older than me by nearly 20 years and was instrumental in helping me learn to listen for the voice of God in everyday life.
In the weeks following his death, many of my friends sought to comfort me by quoting passages from Scripture. "All things work together for good." "I know the plans I have for you, declares the Lord."
To be blunt, these attempts at offering consolation pissed me off.
There are two primary ways to express one's faith: implicitly or explicitly. The reason I shy away from most Christian corporate gatherings is because I choose to express my life of faith implicitly, without a lot of words. I will, from time-to-time, discuss matters of faith explicitly, as I am here, but a quick perusal of my past blog entries will show, I believe, my desire to allow my faith to seep through every pore of my lived life, and not so much through references to Scripture or religious language.
Martin Buber, the Jewish philosopher and educator, believed that there must be no distinction between words and deeds. Words are not rootless, floating about like the feather in the opening scene of Forrest Gump. They are like leaves on a tree, each one with a unique function, each helping to make a tree a tree. Words carry weight, and should not be misused like a credit card during the Christmas shopping season.
I imagine most of us have run across people who engage in "spiritual speak."
"Isn't God good?"
"God loves you."
"Turn to God... He'll give you peace."
I think that these words are most often unrooted; they do not spring from within the person speaking the words but are merely places of comfort for the speaker to retreat into, like a fortress with high walls. When I say that I am sad and someone tells me that "God is good," what they really mean is "I am uncomfortable. I cannot face this situation. I fear the uncertainty that you are requiring me to enter into."
I do not want an answer, I want a person.
Words can be loud, but silence even louder.
Stop talking. Be.
Monday, December 17, 2007
The second course of action Dr. A is prescribing is begin RSV (Respiratory Syncytial Virus) injections, beginning this Thursday. This is to prevent any possible respiratory infections that could do long-term damage to Ian's lungs. These are specialized shots that require a doctor to be present to administer them (at least the first dose).
Our PT and case supervisor visited again last week to finalize Ian's program: The physical therapist will visit once every other week (at our request) and the occupational therapist will visit once every other month, at least until Ian requires more care. This program can be amended at any time if we feel like Ian is falling behind in some areas.
He is smiling a lot these days, and is able to sit (with my support) without looking like a boxer who is trying to dodge a hit. He's beat me in 8 out of 10 arm wrestling matches, although I think he's cheating. He shouldn't be allowed to smile during a match as it is a distraction and I lose my composure.
Sneaky little bugger.
Sunday, December 16, 2007
The airport in Peoria is small - intimate. Deserted. We rent a car, find our camera equipment, search for our hotel in the darkness. A few wrong turns.
I am alone in my room, which has a small kitchen. It is unbearably hot. I lie in my boxers on the bed, only to realize I have left all my toiletries in the car. Rather than locating my co-worker, I fight with a vending machine for a bottle of shampoo.
I stay up late watching a movie that makes me so angry that I watch all the credits to determine who directed the film. Romeo is Bleeding is such a bleak and violent and numbing film that I vow to write a letter to the director when I get home. (I looked him up, but now just pity him, based on his track record.)
I wake often, as is the case when I know I must be somewhere early. We meet our contact at 7am in a Bob Evans restaurant, where the pancakes are so ridiculously big that I cannot finish them with a clear conscience. Our contact is about my age, thin, a company man. Wears a jacket, hat and belt buckle sporting the company logo.
We drive to the facility where we are supposed to get shots of large pieces of equipment in motion. Most of the day will be spent shooting in a large aircraft hanger-sized "shed" instead of out in the cold, which I have no problem with.
Our first task is to outfit the equipment with new logos. We find some scrapers to remove the existing logos and chip and scrub and paint. We prepare the shooting location by planting a huge tree stump in the dirt floor of the "shed." We film a piece of equipment demolish the tree stump in a flurry of wood chips and smoke and dust. We film another machine as it grinds up a huge concrete slab we have buried in the red dirt. I am sweating, yelling directions to the operator.
Lunch. Four hours until we fly back home. We pound down the food and rush back for the remaining hours, fixing broken machines, shooting outside, demoing some simulators, getting shots from up high in a cherry picker.
It is time to go. We say a quick goodbye and are back at the airport fifteen minutes later, where we quickly board the flight home. We have the same stewardess, who remembers me.
There were a few moments during the shoot where I stood alone in the enormous "shed", surrounded by noise and machines and shouting people when I wondered if God was in the moment, was present, cared. Did what I was doing matter?
I got home at 9pm and was greeted with "Daddy!" from Silvi's room. She was jumping up and down in her crib; what a wonderful greeting. Needless to say, she slept in our bed that night. She was entirely too excited go back to her room.
Friday morning and I was back in the edit suite early. I had an 11am deadline to get a 10-minute video up on our FTP site for the client to review with the powers that be. It was a race against the clock, and I finished with only minutes to spare, while have to cut a few corners.
I went to lunch with a few of the guys at work, only to receive a frantic call on the cell phone from my boss, saying they were having problems downloading the video on the client's end. I talked them through it over the phone; Friday's are Chinese buffet lunches and I wasn't about to interrupt that for a trip back to the office.
The client called at two and questioned the shortcuts I had taken. I explained that the final video would be polished and that I had already addressed the issue. A few other changes, and I put the final video back on the FTP site. I started another project, a dvd with a complicated menu that I must program. But I am exhausted from the shoot on Thursday and leave work early.
I stop on the way home for pizza and three movies from Blockbuster; Who is Camus, Anyway?, When Nietzsche Wept and Oceans 13. I watch the Nietzsche film first and end up fast forwarding most of it. It is based on a book by the same name that I really liked, and is a melodramatic mess and disappointing. I start the Camus film while Annie is feeding Ian and fall asleep halfway through.
Saturday is wall-to-wall activities. Annie and her sisters are decorating cookies at her parents, and so I take Silvi for one of our cultural outings. One of my greatest desires for her is that she will experience different cultures. I take her to a mixed neighborhood which is comprised largely of people from India and the Middle East. We eat in a wonderful deli that is part grocery store and is frequented by immigrants from the Middle East. Rice and curry and potatoes and passion fruit and yogurt with a soap opera in Arabic blaring in the background. A prayer room and call to prayer over the loudspeakers. Silvi seems to enjoy these outings. I hope they stay with her.
Nap time, and then a walk to the church up the street where Silvi is practicing for her part as a lamb in the Christmas pageant. Her costume is adorable. She is shy and does not want to participate at first. But after a few songs, she forgets about the larger kids with staffs that are being swung about like lightsabers.
The Christmas pageant is in the Episcopal Church where Annie works one day a week, taking care of the children and helping make ends meet. It is the perfect part-time job as it is only a block away and Silvi and Ian can accompany her and have fun playing with the other kids.
After rehearsal, we drive over to Annie's parents for supper and an early celebration for those who will be out of town over the holidays. The house is overrun with screaming kids, who love to run the loop from the dining room, through the kitchen and into the living room. Over and over and over. Each lap louder than the previous one.
We eat the decorated cookies and have leftovers from Thanksgiving. (surprisingly good for being frozen so long) Then home for the night, where I try to finish my Camus movie, to no avail. The title is very misleading, since it is a Japanese film about the youth culture, which would have been fine but I thought it was a documentary for some reason. I fell asleep around 8:30.
This morning was the rush to get to the church for the pageant, where we were met by my parents and Annie's brother and sister and her husband and kids. Silvi did great for most of her "performance" and I got some excellent video footage of her with her finger halfway up her nose. Numerous times. Annie finally went up and motioned for Silvi to come down off the stage as it was evident that she was DONE and the stage director(s) were having a hard time continuing to convince Silvi to stay.
She was definitely the cutest girl up there, nose picking and all.
Lunch down the street at Famous Dave's BBQ. Naps. We all slept in our bed this afternoon. Even George, our cat, slept at the foot of the bed.
Then another daddy-daughter date. I took Silvi to see The Golden Compass, which she seemed to really enjoy, "mean monkey" and all. I debated not taking her because I knew it would have some scary moments, but she seems to be taken with scary things. I was watching Jurassic Park one day and she wandered through and absolutely loved it. (I fast forwarded the more gory scenes.) Another one of my desires for Silvi is that she will develop a love of different viewpoints and perspectives. I had heard that The Golden Compass was kind of the anti-Narnia; the film is based on the best-selling books by an outspoken atheist who, according to the news article I read, has a strong aversion to C.S. Lewis' stories and perspective.
You might be surprised at the questions a two-and-a-half year old will ask. "Daddy, why was the monkey being mean?"
"Well, some people are just bad."
"That's a good question, babe. Some people are hurt inside, so they act bad to try to keep from being hurt anymore."
"Why are they hurt inside?"
You can see that her young mind was really stretching her dad's ability to answer some of life's most difficult questions. I need to read the books to understand what the author is asserting, but the representation of organized religion in the film were both accurate and caricatures in the same breath. I enjoyed the film, and will have to mull it over before commenting further.
I'm at the coffee shop around the corner from our place. Jazz is playing on the speakers. I just had a chai latte. It's 9pm on the dot, and I'm going home to watch Ocean's 13 for the first time.
Wednesday, December 12, 2007
Hotel rooms are sad places when you're on your own. I would rather stay in a youth hostel. I miss the sounds of other people milling about, talking, cooking, laughing.
Have you noticed the lack of laughter in most hotels?
I fly to Peoria in a few hours to film a marketing video; I've never been to Peoria. Most of the day will be spent standing in the cold, orchestrating the movements of some large machinery. I brought my long johns. Wool socks. Hand warmers. I should buy some Power Bars.
I still love to fly, even after spending so much of my life in airplanes. I always buy a magazine and a candy bar at the airport. Never before. For some reason, the candy tastes better and the magazine is more interesting if I buy it there, like popcorn tastes better in the movie theater.
I need to go pack my camera gear. Tripod, lights, extra batteries, cables. See you Friday.
Tuesday, December 11, 2007
Simple and to the point. Same great taste.
Monday, December 10, 2007
For the first time since his birth, we finally feel like we've found someone who will advocate for Ian. Not only did he call our pediatrician, but he also called our cardiologist after Annie left the office. The same cardiologist who gave us a pat on the back and said, "See you in March," a few days after Ian's heart surgery.
The phone rang around supper time this evening. It was the cardiologist. She now thinks it might be a good idea to examine Ian in the next few weeks. It seems like Dr. A has a lot of pull around these parts.
According to Dr. A, we were right to resist trying out various medications on Ian to see what might work to alleviate the pressure in his lungs. (Our pulmonary specialist had prescribed various medications, which we did not feel comfortable giving Ian based on her lack of conviction in diagnosing the root of Ian's problems.)
Ian is fine. We'll still meet with the cardiologist just for the sake of dotting all the "i's", but no medication. Dr. A did insist we meet with an audiologist because Ian's response to sound seems a bit delayed and because children with Down syndrome are so prone to hearing problems or ear infections.
OK, so that's the skinny on that. Now we just have to convince Dr. A to take Ian on as a permanent patient. But we'll save that battle for next week. Whew!
Saturday, December 08, 2007
Since it is almost Christmas this tag has a wish theme. It does not have to be realistic wishes or materialistic things. This is what you need to do: Write a wish list with seven wishes, describe your wishes, short or long, and then tag 7 Bloggers to do the same.
- Health for my family, especially young Ian.
- That, as I turn 40 this coming February (hint, hint), I would welcome middle age with grace and a level head. Or very drunk. Either way, I still have my hair.
- For a few hours each day where I may dream on paper in order to finish just one piece of writing I can put on my bookshelf and say, "Look, I wrote that." So if you have a few hours you're not using, send them my way.
- A plane ticket to anywhere in Europe, preferably somewhere where I can sit in a cafe and conjure up the spirit of Marcel, Kierkegaard or Weil.
- The sketching talents of Kathe Kollwitz, directing ability of Nanni Moretti and writing skills of John Irving.
- The comedic timing of Bill Murray.
- Peace on earth. Or a Big Mac. Yeah, make it a Big Mac.
We were concerned that the other doctors just "threw" tests and medication Ian's way, so hope the visit on Monday will shed more light. Just thought you'd like to know.
Me: In a little bit, baby. Daddy was up real late last night.
Silvi: Why were you up late?
Me: Because Daddy was having an existential crisis.
Silvi: What are you going to do with your eggs..al crisis?
Friday, December 07, 2007
I've mentioned this before, but ever since my trip to shoot a documentary in Kosovo following the war in 1999, I've had a fascination with the Balkan region. The Balkans are to Europe what Israel is to the Middle East, a spark in a bone-dry pile of tinder. I doubt many others are following the recent news on this part of the world, but Monday is the deadline for talks to decide whether Kosovo will remain part of Greater Serbia or will attain independence.
The Serbian government is again threatening possible use of force. Or sanctions. Or closing it's border with Kosovo. Russia is upset with NATO. It's a huge mess, and is years away from any resolution.
Which brings me to the title of this post. After days like today, where I spend my hours in a studio shooting videos for XYZ corporations that have so many resources and huge budgets, I get so discouraged with my current occupation. I really want to be back over in the thick of things, shooting stories that change lives, that makes the world a better place for maybe just one or two families. Or five, or twenty. I love being completely lost in new cities, or crossing the border at midnight, dogs barking, armed guards demanding to see my papers. Walking in field only to come to a sudden stop when I hear a metallic "clink" under my shoe, and the relief of finding a piece of barbed wire instead of a landmine.
In the picture above, my wife and I had just explored the bombed out Serbian administrative headquarters, seen in the background. A bunker buster bomb had drilled a hole straight through to the bottom of the building. Who worked there? Where are they today? Can they forgive those who bombed them or will their children take up arms to continue the battle?
I wish I could make my living finding the answers to questions like these. That's my gripe on this snowy day. Annie says that I always start complaining about my life when winter roles around.
I guess I should be thankful for winter... it's been the springboard into all sorts of mischief.
You ever watch CSI? I would hate to see all my germ-laced saliva fill the studio in extreme close-up...
Now that you're grossed out... time for yet another box lunch... Ham and Swiss. Yummy.
Thursday, December 06, 2007
I can now relate with the cup.
I don't know if I qualify for the medical term "flu" but whatever was in my stomach yesterday is now free, making a new home somewhere in the Minneapolis Waste Disposal System.
As Sgt. Miller said to Private Ryan, I now say to the bugs that have found new freedom via the porcelain god, "Earn this."
Wednesday, December 05, 2007
Can't have the cameraman sneezing into the lens all day long; although it would be fun to make the video an Advant-garde piece, I think the client would fail to share my enthusiasm.
Tuesday, December 04, 2007
"Being a disabled child is very different from being a non- disabled child. The world you inhabit is shaped by prejudice, assumptions, false predictions, and fear. Your ability to withstand this is dependent on the people with whom you are connected – how much they can love you and protect you from the value judgements of others."
Beware the Baubles
They stole away our lives
Condemned us to a bean-bag existence
Alone together with our fellow prisoners
Left staring at mobiles, slowly moving round and round,
Just out of reach
In a hush of false protection
They pared down our experiences
To their diet of force-fed crumbs
Not broken–down, but shattered
Stripped of all meaning and context
By their one-step-at-a-time Special Curriculum
Practising for the life
They would never let begin
Now they are trying to sell our lives back
Through their glittering, flashing, bubbling rooms
Mechanical, artificial, expensive,
Another capitalist con
Feeding off our starvation
Beware the baubles, the disco dream
The light of the sun will do, thanks,
The brush of the wind, the wet of the rain,
The sound of children’s laughter
In an ordinary, busy classroom
The touch of a friends hand
Welcoming us back
Into the world
Life is a multi-sensory experience
Full of lights, tastes, smells
Colours, sounds, textures abounding
Emotions, all our birthright
Denied to us by misunderstanding
Put away your cheque books
Bring us in close to the beating pulse
Of shared messy, risky, noisy days
Where we all have complex needs
We will learn then all that matters
And so will you.
© Micheline Mason 2004
1. The Simpsons episode where Homer eats an insanely hot pepper and has a hallucination in which he meets a coyote voiced by Johnny Cash. 2. The Seinfeld episode featuring the black and white cookie.Jerry: Uh, I don't feel so good.
Elaine: What's wrong?
Jerry: My stomach, I , I think it was that cookie.
Elaine: The black and white?
Elaine: Not getting along?
Jerry: I think I got David Duke and Fahrikan down there.
3. The episode from The Office where Michael burns his foot when he accidentally steps on his George Foreman grill.
Michael (enters office on crutches and foot wrapped in bubble wrap): Morning everyone. Don't freak out, I forbid anybody to freak out. Clearly I have had a very serious accident, but I will recover, God willing. I just want to be treated normally today, normal would actually be good, considering the trauma that I've been through.
Pam: It's just that before you said you didn't want any special treatment.
Michael Scott: I don't want any special treatment Pam. I just want you to treat me like you would a family member who's undergone some sort of serious physical trauma. I don't think that too much to ask.
Pam: Do you want some aspirin? Because you seem a little fussy.
Michael Scott: No, I don't want some aspirin! Yeah I am fussy! Aspirin is not going to do a damn thing... I'm sitting here with a bloody stump of a foot.
4. The Arrested Development episode where a seal bites off Buster's hand while he's swimming in the ocean.
Lucille: I asked God to take anything from Buster to keep him from going to war.
Michael: Mom, God's not going to answer a call from you.
Gob: I trained the seal to eat cats, and then released him in the ocean.
Michael: OK, you've got a better case than mom does.
5. The M.A.S.H. episode where Hawkeye (Captain Pierce) starts to have a nervous breakdown.
Sherman: I think you could use a few weeks of observation.
Hawkeye: What do you mean, observation. The only thing I want to observe in Tokyo is what a good time I'm having.
Sherman: You need tests...
Hawkeye: Oh, come on!
Sherman: But you have been doing some pretty bizarre things.
Hawkeye: Gee, I don't know why!? I'm only 12,000 miles away from home, sewing people back together who aren't even old enough to shave and a bunch of people I don't know keep dropping bombs on the place where I work which has a big red cross painted on the roof. Maybe I should just hire a band and have the whole thing catered...
Monday, December 03, 2007
Where is the child in all this? The unique individual who came into the world expecting a fanfare and champagne, only to find tears and disappointment?
For a disabled child the world can seem very strange indeed. Lots of adults paying attention to "something" of which the child is completely unaware. The child's sense of self always includes what others call their "impairment" as an integral part of their being. The only "them" they have ever known. If they are in pain, they probably want it to stop. But apart from that, the child is like any other, driven to learn and become itself - a whole, new person with a body, mind and soul.
A disabled child, even with major difficulties in moving, speaking or processing information, will seek to gain control over self and the environment according to their own inner motivation. Through endless interaction with others and the material world, through play and experiment, trial and error, laughter and tears, every child develops their personality, skills, and sense of belonging in the world. When other people assist the child to initiate interactions, the child learns to expect co-operation from others, and confidence in her/his self. Play and therapy are not the same thing. Play is about the child's goals, therapy is about the adult's goals. (emphasis added) The more impairments a child may have, or the greater degree of those impairments, the higher is the level of professional intervention, the less will the child "play" and the more they will be directed by others - and the less ability will they have to protest or get away!
Many "programmes" for young children involve forced manipulation of the child's limbs for several hours a day, by adults the child may not even know. It is difficult to know how the child can cope with this without "shutting off", going numb, or giving up in some way. The "medical" model of disability attacks ones' relationship with oneself because the assumption is made that the impairment is the enemy, but in reality the impairment is part of the person, and only the person can themselves choose to separate them without feeling torn apart. So uninvited intervention, however well meaning, is a form of violence to the inner being.
Why does life have to be so danged contradictory all the time?
As we walked away from the theater, she burst out with, "That was fun!" Imagine her enthusiasm when she realizes one day that most films actually do reach a resolution.
Unless it's a French film, in which case all you're left with is reality.
Annie and I never got around to talking about Ian and his therapy program. Judging by the comments I got on the subject, there seems to be no shortage of conflicting opinions. I suspect this is a good thing, to have weighty views on both ends of the seesaw. "Sweet are the uses of adversity."
Some of the things we can do for Ian are common sense things, like lots of tummy time, helping him remember how to roll over, introducing baby food when the time comes. "There needs no ghost, my lord, come from the grave To tell us this." Other issues might call for professional help, like therapy for various types of muscles (such as what Steve brought up in his comments dealing with certain muscles in the mouth).
All of the doctor's who have seen Ian have remarked on his strength and developed muscle tone. "Robust grass endures mighty winds..." Based on this, I think we're leaning toward having the physical therapist come once a month. And as far as the occupational therapist is concerned, I still need to be educated as to what kinds of things Ian could learn from him/her.
Thats where we're at. "If I chance to talk a little wild, forgive me."
Friday, November 30, 2007
(Updated: It's a snowy day, so I added my mood music for the day in addition to my other tunes. And yes, these songs really date me.)
I added some songs that I'm into these days over on the right. Enjoy, or at least pretend to.
I'll talk it over with Annie this weekend and make sure Ian is getting what is the absolute best for him. Thanks everyone for your comments and for helping a dad get off his duff and being a little more proactive.
Means he'll be heading for that cookie jar any day now...
Thursday, November 29, 2007
Tricia over at Unringing the Bell got me thinking about photography again. Have you seen this site? The goal is to post a photo a day based on the city you live in. It has some great pictures of my city - Minneapolis - and scores of other cities around the globe. Check it out.
P.S. The November 21st, 28th and 29th pictures were taken right down the street from our apartment. The picture for Nov. 20th is also just a block away.
That's kind of what it's like for me around this time each year. As the days grow shorter and the air colder, the dust bunnies all gather in my head and slowly take over.
Must... increase... power....
Wednesday, November 28, 2007
So when I heard Ian had to start PT, I started digging through my closet, looking for a flashlight.
He had his first physical therapy session on Monday. The therapist said that developmentally he's on par with children sans Down syndrome. But she was a little concerned about his hearing. When the therapist made various noises, Ian responded by becoming very still. It may just be his natural disposition to freeze up to try to analyze the noise or it may be that he's struggling to hear it. He passed his hearing test when he was a few days old, but I think we should order another one. Just to be safe.
So I suppose we're about to join the ranks of the few, the proud, the parents who get to watch a stranger twist their children like a pretzel once a week.
I'm too self-aware to be a good dancer. Dancing requires an abandonment to self, and, control freak that I am, I have to learn to live with the fact that I'll probably never bust a move on the dance floor. At least not the kind of moves that don't attract looks of horror. I once went on a blind date in my late teens and the girl started laughing at me on the dance floor.
If and or when we ever buy a house of our own, I want to have a space dedicated to music and dance. (I'll be the DJ.) Right now in our apartment, our bed serves as the dance floor for Silvi as she spins, twirls and does whatever it is you want to call what Robbie Williams does.
I mentioned my penchant for stadium rock. But on our "dance nights," I'll cue up anything from Middle-Eastern techno to the latest Bollywood hits from India to love songs from Brazil to The Itsy Bitsy Spider or Jack Johnson, specifically the theme to Curious George. It cracks me up to hear Silvi request a J-Pop song from Japan, "I want to hear Suki Nana!"
If I could learn to do one thing, it would be to learn to dance well. For now, it'll be me and Silvi bouncing around the bedroom, groovin' to The Wheels on the Bus.
Tuesday, November 27, 2007
Right now I'm putting together a tedious hour long video to be shown at a conference on Thursday. As is often the case, the deadlines are so tight that there is no time to mail or FedEx the final video, so I have to host it on an FTP site where the client can download it from their location. Not a lot of room for errors.
There have been a few times where I've had to work 26-27 consecutive hours to finish up. Fortunately not this time.
You know you're stressed when you get to the Wendy's drive-thru and curse the fact that there are two cars in front of you. Or you start fantasizing about super gluing pencils to your fingernails and calling yourself The Leadinator. Or begin wondering how aerodynamic your EZKeyboard is when the client asks for the text to be just a little bigger, bigger, bigger, bigger, too big, a little smaller, a little brighter, too bright, a little less drop shadow, on second thought, let's not have any text after all.
Ahh, the Wendy's Number Seven Combo meal. You demand nothing of me and, oh, how you comfort me.
Monday, November 26, 2007
I'll sleep next year.
Friday, November 23, 2007
Well, OK, so I was stuffing myself, too, but come New Year's, while all of you are frantically trying to write out your goals, I'll be partying like it's 1999.
(I made a new page for them and put a link over on the right so if/when I fail, at least they are hidden from view.)
Wednesday, November 21, 2007
My daughter, Silvi, will be born any minute now. At the risk of being a stereotypical new father, I feel this huge, almost overwhelming, desire to change everything about myself, and the world, to ensure that Silvi is safe and loved. As someone who tries to control the chaos of life, I realize just how much there is that can come between that safety and love. Life is dangerous, and love even more so.
I have chosen to call this journal Narrow Ridge because I believe that I must walk along the narrow ridge in this world. I must live between hope and despair, between certainty and doubt, between laughter and tears, between community and solitude. Truth be told, I am not very good at walking the narrow ridge. It is all too easy for me to slide into a life of despair and doubt and sadness. And solitude.
As my daughter joins our family, I realize that I will live a life observed. Lately, I've been feeling as if I'm about to meet my inlaws for the first time and they will be staying with me for a week. I got rid of all our old coffee mugs because none of them matched. We now have six new matching coffee mugs. I sold half of my books. I took three carloads of clothes and lamps and old furniture to the thrift store. The closets have been straightened, the dishes done, laundry washed, floor swept, carpets vacuumed, and we're buying a new coffee table this week. And I bought a soccer ball to lose the spare tire(s).
None of those things, of course, address the real issue. I want my daughter to look up to me, to respect me, to love me. And there's just so many things about me that are, well, unfinished.
This journal is an attempt to share just a little of a life well-lived along the narrow ridge.
It had to do with people's comments about Ian again. I know that it's quite natural to be so sensitive to how my little guy is perceived by everyone in these early days, but I've got to tell you, I wanted to smash a chair against the wall last night.
Take a breath, Tom. Those feelings are starting to rise up again as I write here.
I know it's hard for people to say the right thing, and that, in fact, there really is no "right thing" to say about all the feelings that are swirling around like a flushed toilet full of ... water.
Like the nurse who told me that Ian can never ride on rollercoasters because his neck muscles can't hack it. That's true, but did she have to tell me that two minutes after Ian was born and diagnosed with DS!? I mean, Ian still has blood all over him, Annie is being sewn up and you're handing me my son and telling me not to let him ride rollercoasters!?
That's actually pretty funny. Now.
But that's not what I got worked up about. It was just this little off-the-cuff remark about there being no disabilities in heaven. That sent me over the edge for some reason. I just wanted to tear apart the house and yell, "Ian is alive and here and yes he has a disability but don't talk about how wonderful it's going to be for him when he's dead because he's very much alive and he's smiling and trying to talk and I love him and I hope there are no insensitive people in heaven because if there are then I'm going to kill them and then I'll be kicked out of heaven with a one way ticket straight to hell!"
I'm glad I slept on it.
But you know what, I said some pretty stupid things when my niece died. I had to apologize to my sister for the weakness of my words, for wanting to say things that would ultimately make me feel better and back in control of the world. I'm trying to learn to give people the benefit of the doubt, even when I want to hide and rage and throw a tantrum that would make Silvi proud.
I'm anticipating the day when I don't fly off the handle so often. It's only been two-and-a-half months. (Is that all? I feel like I've lived ten lifetimes in these past weeks.) And I'm also looking forward to the day when all I have to write about is how bored I am at my job or tell you about the flat tire I got on the way home last Friday night and ripped my jeans jumping over a fence.
I miss being bored some days. Nah, I don't.
Tuesday, November 20, 2007
Doctor #1: "Ian looks great. See you in March."
Ahh, now we can relax and kick back for four more months. Ring, oops, excuse me, the phone is ringing. "Uh huh, OK, yup, umm, let me look on my calendar. Yeah, I can come in to see you tomorrow."
That was doctor #2. She thinks Ian's breathing is a bit "labored." Had me count his breaths while she timed them on the other end of the phone.
Doctor #2: "Well, after hooking Ian up to the Medieval Make Your Child Sit Vertically And Scream For Thirty Minutes X-Ray Machine, we see what appears to be a dark spot on his lungs. Why don't we schedule an appointment with Doctor #3 and see what she says, hmm?"
Doctor #3: "Ian looks really healthy and has great muscle tone. Aside from that raspy breathing I'd say he's perfectly healthy. But let's run some tests next month. In the mean time, here's a Make Your Child Sleep At A 45-Degree Angle Device and a little thing we like to call The Nebuliser. It's a mask that allows him to breath in this medicine we provide you. For how long, you ask? We give you a six month supply. Oh, you can get more, sure. He may need to do this once a day for years. Please see the receptionist on your way out to schedule a Let's See If Your Child Has Acid Reflux Test next month. We'll consult with Doctor #4 to see if additional tests will be required after that."
I love these straight answers.
Monday, November 19, 2007
Sunday, November 18, 2007
Either way, the world wishes they did not have to face the questions my son's life requires asking.
I'm a layman philosopher. Not an expert. I read philosophy because it brings me joy. I love the ring of the precise words as they sit next to each other. The way philosophers take a flashlight and shine it into the shadows, searching for another piece of the puzzle that explains or mystifies.
Because I want to know the truth, because I want to see the world as it actually is and not the way I wish it to be, I must conclude that my son is hated.
Statistics are numbers that capture real events. They are scratches on paper that represent breathed experiences. And so if it is indeed true that 90% of mothers choose to end their pregnancies upon learning their future child will be like Ian, I have little choice but to believe that the world would prefer Ian's non-existence over his existence.
The world would prefer that my son did not exist.
Why use the word "hate?" As a layman philosopher, I realize the importance of using the right words. Would you prefer "distaste" or "dislike" or "hostility" or "animosity" or "loathe" or "abominate?"
Perhaps you think my language is too strong. OK, then I will use the word "fear."
The world fears my son.
To understand this, we must first understand the Story we are living. What are the central themes that we all appear to subscribe to?
What do the movies tell us? Will Smith in The Pursuit of Happiness tells us that if we work hard we can overcome all obstacles. That is the theme of most movies created here in these union of states called America. Sister Act, Apollo 13, Dead Poets Society, Rudy and Flashdance are some that jump to mind right away. All films I enjoy, by the way.
Or look at the best-selling books this week: You: Staying Young, Become a Better You, The Secret, Women and Money, Think Big and Kick Ass in Business and Life by Donald Trump.
It's all the Story of Progress. Work hard, more education, do your best.
But Ian is a stumbling block on this road to Progress.
Ian represents a limitation.
And the last thing the Story of Progress can tolerate is a limitation.
I read stories of parents afraid to allow their "normal" children to learn in the same classrooms with children like Ian. These parents are afraid it will hold their children back. Never do we hear parents say that having someone like Ian in the class will improve their "normal" child's chances of making it into Harvard or Princeton or Oxford.
It may help this "normal" child understand more fully what it means to be human, but that is not the Story we are living.
Advocates for children with Down syndrome may cringe at this assertion of mine, that the world hates my son. They may ask how stating such a thing is in any way helpful to advancing the cause of people like Ian.
I am all for advocacy and education. Ian's life will be all the better for it. And the lives of countless people with Down syndrome are better today than ever in history.
If they survive the womb.*
I think it is best to start with the blinders off and eyes wide open. Let's not fool ourselves. Ian forces us to ask questions that are not part of the Story of Progress. Questions about fidelity and sacrifice and suffering and love stripped of it's Romantic and nauseating lack of staying power.
Yes, the world hates my son. But it desperately needs him.
*I am not talking about the issue of abortion here , but more about the decisions made to abort because of a diagnosis of Down syndrome in utero.
Friday, November 16, 2007
Ian sleeps well through the night, but it may be too well. All that work just to breath wears the little guy out. Breaks my heart, watching him work at it so hard. Some days he's so pale, like rice paper. His skin is translucent - delicate.
He's smiling a lot. And he's trying to laugh. I'm not sure, but I think he's laughing with me and not at me.
[2:45 pm - Ian has another appointment back at Children's Hospital on Monday afternoon to do more tests on his labored breathing.]
“There were rows upon rows of young people with Down syndrome,” Ms. Ahern said. “These children are mobile and can move around. But they are being left in metal coffins (their cribs) to lie there until the day they die.”
Thursday, November 15, 2007
Tuesday, November 13, 2007
Sunday, November 11, 2007
In a few hours Annie and I are going on a date to watch a soccer game at the Metrodome with one Mr. David Beckham. Although I'm not a huge fan, I am a fan nonetheless, and the days when I get to watch a proper soccer match are few and far, far between.
I'll let you know if he lives up to the hype...
Friday, November 09, 2007
Wait, wait, come back. Oh alright, go.
About half my readers just walked out of the room. For you remaining few, notice how much elbow room you now have? Spread out; make yourself comfortable.
I went to hear him because he is one of leading advocates for people with intellectual disabilities. For the past 40 years he's written many insightful books that reflect on the lives of people with disability, such as Down syndrome.
He emphasizes friendship and community, as well a life of service to others, as the primary dimensions of what it means to be human and to live humanly. (This, in my opinion, is the main weakness in the ethics of the philosopher Kant, who calls us to treat others as an end instead of means. While this is a good thing, but does not go far enough.)
Last night he was giving a lecture on the role of theology in the university. I won't go into details about it here; he wrote a book on it if you're interested. In brief, he doesn't think theology should be taught as a discipline, but should serve learning by shedding light on how the disciplines are and are not connected. This, he says, must be accomplished without a return to Christendom.
OK. How's it going out there. I see one or two people are still here.
I think I've found a new favorite writer in Dr. Hauerwas. I went up to him afterwards and told him that I appreciated all the work he has done on behalf of those with intellectual disabilities. He seemed affable and gentle, although you wouldn't know it from his talk.
One other thing. Stanley Hauerwas is an outspoken pacifist. Many of you know that I spent some time in the service about twenty years or so ago. Yup, that's me in my Army uniform, doing some jungle school training down in Panama.
I wish I had a few hours to talk with Dr. Hauerwas. I haven't solidified my thoughts on "just war" or outright pacifism, although I'm probably closer to Billy Carter than George W. Bush. I'm constantly torn between William Wallace and Mahatma Gandhi.
Well, I just saw the last person walk out the door.
Anyway, I went to hear a lecture last night. It was cool.
Thursday, November 08, 2007
The Global Market doesn't quite live up to the mystique of Pike Place, but it has its own charm. Minneapolis has a large international community, especially people from Somalia. In fact, I think that other than Somalia, we have the highest concentration of Somali's anywhere.
Imigrants from all over the world have booths in the market where they sell various trinkets, clothing and food that makes my mouth water as I sit here writing about it. I took my camera with me and snapped a bunch of photos as Silvi and I wandered aimlessly. I have a cheap digital camera from Walmart and long for the day when I can buy a professional digital SLR camera.
A few weeks ago I wish that I had any camera with me. Throughout the week, various events take place in the center of the market, and on that particular night it was belly dancing. The dancer was exquisite and had Silvi join her out on the floor after tying a scarf around her little blond head. How I wish I had my camera!
Last night they were teaching free Celtic dance lessons. No, I did not join them. I haven't watched Riverdance in a long time so felt no need to make a spectacle of myself in front of complete strangers. (I'll have to tell you sometime about my stint as a ballroom dance instructor at the Fred Astaire Dance Studios. I don't think I've danced formally since.)
I love living in big cities. I've been fortunate to have lived in many of them: Chicago, Seattle, Denver, West Palm Beach, and now Minneapolis. I like to take a bus or train to the heart of the city and wander, exploring second-hand bookstores, sneaking into expansive hotel lobbies, listening to musicians play on the sidewalk. And although I don't share Ayn Rand's take on life, I do share her infatuation with tall buildings and bustling streets and narrow alleyways that call for exploration.
I once read a book on the need for men to take to the wilderness from time-to-time in order to reclaim their place in the world. My wilderness is the city. After reading that book, I took a train - alone - along the Pacific coast to Vancouver where I spent three days wandering for miles through crowded streets full of music and shops and life. I'll never forget sitting on the beach as the sun set, watching the hordes of street performers and tourists and skateboarders and families meander along the boardwalk.
Minneapolis is a quiet city, if you compare it to Chicago or Seattle. But on a summer night, when the humidity breaks, you'll find the tables packed on many restaurant patio's or in front of the many pubs and bars on the city streets. If you look hard, you might just spot me walking with my daughter (and son and wife, when he grows a bit) wandering aimlessly, in search of nothing more than the thrill of being alive.
Wednesday, November 07, 2007
But what I felt, was, I feel like a horrible dad for even thinking it, but I wanted to feel that way again. You know? Back when things were... "normal."
I don't want an extra chromosome, a "little angel", a "gift from God". I don't want to be a part of a special community. I want to blend in, like everyone else.
And I don't want to have to reassert the fact that I love Ian. Of course I love him... he's my little guy.
Sorry. It's hitting me a bit hard this week. I think I need a trip somewhere sunny.
[Updated: It's an hour later. I should have mentioned that I wrote this post after watching videos on YouTube and being bombarded by juvenile attempts at being funny at the expense of others, like this video. I know, I know. Don't watch them. Too late.]
I hate doing things because I have to.
And I'm not big on group activities. At parties you'll find me on the outer edges, either talking with a few friends or just sitting alone, enjoying people watching.
Plus I've got a bad case of the pre-winter blues; I'm sure no one wants to read about how long I stare at the screen without knowing what to say. If you do, here you go:
I've been meaning to paint my cabinets; I'll call you when the paint begins to dry. I'm sure you'll enjoy the show.
Tuesday, November 06, 2007
Altogether-Too-Peppy-For-The-Situation-Cardiologist: "Ian's heart is still enlarged and there's pressure on his lungs. Thanks for coming in; see you in March."
Annie: "Uhh, hmmm, okaaaayyyy."
Altogether-Too-Peppy-For-The-Situation-Cardiologist: "Otherwise, he looks great. Bye-bye, now."
*That's from I Love Lucy, for all you youngsters out there.
Monday, November 05, 2007
But I'm committed to writing each day this month (thanks a lot, Isabel). Oh well. Let's hope my self-censoring radar will kick in before I become inappropriately transparent.
I think one of the benefits to having good people in our lives is their ability to act as mirrors. Without Annie, I would probably consider myself to be a normal and well-rounded guy. I would think that it's perfectly sane to refuse to drink milk more than three days old, that everyone buys journals in bulk without writing in them and that reading for eight hours straight is a good way to improve my social life. (Who says imaginary friends can't make you happy? Try telling Calvin that Hobbes doesn't make him happy.)
Without my wife, I would also probably think that buying a new/used Bible every other week is a reasonable use of my pocket cash.
I used to buy lots of Bibles. Every translation I could get my hands on. NIV, The Message, NKJV, NLT, RSV, with and without cheese. I won't bore you with a list of them all.
I'm not very "religious," at least I don't think so. I pop into a traditional church service once or twice a year, I have no idea what to do when Lent rolls around and haven't the foggiest which side goes first when making the Sign of the Cross. I just try to mimic Jesus, like a little brother following around big brother, annoying the crap out of him (no offense, Luke).
I'm sure I would have annoyed Jesus. "Umm, Tom, it's cool you want to hang out with me and all, but I'm heading out into the desert for some alone time."
Anyway, I'm getting off track here. I knew I should have just posted more pictures today.
Over the years I think I've figured this Bible-buying compulsion thing out. It comes down to a matter of trust.
See, I just don't trust many "Christians." That goes for Bible publishing "Christians" as well. For instance, it's hard for me to read the English Standard Version translation because one of the professors on the translation team is friends with an organization for which I have a strong dislike. I struggle to read the New Living Translation because Pat Roberson likes it. (Sorry, Pat, I know everyone uses you as a whipping boy, but you bring it on yourself.)
Yeah, I know, like I'm Mr. Perfect. Shhh... I'm bearing my soul here.
I also don't trust advertising. Probably because I'm in the industry. I know how jaded and skeptical - and manipulative - advertising is prone to be. Walk down the religion section of any bookstore and look at all the brightly colored Bibles. Try not to think of the team of graphic artists and sales associates and marketing personnel and MBA's who helped put that Bible on the shelf. I used to tear the covers off of my Bibles because it bugged me so much.
Alright, so that last part is pretty weird. And I knew that before Annie told me so. But, hey, you're the one who's still reading about my warped sense of trust.
I suppose that I am still trying to find a Bible that is untainted by flawed people, although I realize that it's a futile search. It's just so hard to learn to trust, you know? My wife's helping me in that department. So are Silvi and Ian.
Stupid winter. Making me look like a freak in front of everyone.
Sunday, November 04, 2007
Saturday, November 03, 2007
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.
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.
Friday, November 02, 2007
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?