Wednesday, October 31, 2007
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.
Tuesday, October 30, 2007
Monday, October 29, 2007
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.
Sunday, October 28, 2007
- "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.?"
Saturday, October 27, 2007
Friday, October 26, 2007
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."
Thursday, October 25, 2007
If you have an account, stop in and say hi here.
Tuesday, October 23, 2007
In a few weeks he'll begin his weekly physical therapy sessions. "The Future's So Bright, I Gotta Wear Shades."
Monday, October 22, 2007
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.
Sunday, October 21, 2007
Saturday, October 20, 2007
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.
Friday, October 19, 2007
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...
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.)
Thursday, October 18, 2007
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!
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Wednesday, October 17, 2007
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...
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...
Tuesday, October 16, 2007
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.
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...
Monday, October 15, 2007
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...
Saturday, October 13, 2007
Again, my fault for going to the wrong area. It was chilly out and we wanted to cut through the hospital, so went through the nearest door and just asked the first receptionist we bumped into.
Note to any reading medical professionals:
Parents are in not able to process everything that is being told to them. Even if we the parents nod our heads in agreement, we are not hearing much. Like that person having to slam on their brakes to avoid an accident, our attention is focused only on one thing: our child.
Annie and I kept saying to ourselves that it would be nice to have a map and names of the rooms we were supposed to go to. The hospital is a labyrinth and a huge one at that.
I don't feel like I have a problem following directions. But I did spend nearly a full minute trying to unlock the wrong car in the parking lot. Got a lot on our minds these day, to state the obvious.
That ends my rant. No, I'm not going to be one of those parents of patients, like a teenage beauty contestants mother (or father).
I'm just saying.
Friday, October 12, 2007
Ian is a healthy boy, other than that big hole in his heart. He's gained excellent weight, has strong muscle tone (for someone with Down syndrome) and seems content.
We are all set for surgery at 8:00am on Monday.
Today was kind of a fiasco, though.
We did all the preliminary tests: The EKG, Echocardiogram, blood pressure, preliminary assessment meeting with the cardiologist. Then we were told to go to the Pre-Op at the main branch across the way. Well, there are two Pre-Op areas. And, as was bound to happen, we chose the Emergency Room Pre-Op by mistake, much to the befuddlement of the receptionist.
Us: "Hi, we're here for the Pre-Op and to have blood drawn."
Receptionist: "Blood? No that's on the 4th floor."
So we're off to the 4th floor, where, of course, they have no idea who we are since we were supposed to bring paperwork from Pre-Op in the Main Branch.
No matter. After waiting an hour, the "fifteen-year-old" nurse draws Ian's blood. Missed the vein in one arm. Stick. Scream. Stick. Scream. Moved on the next arm. Glove tears. No time to get a new one. Stick. Scream.
Back to befuddled receptionist. Sent to wrong Pre-Op again to meet yet another befuddled, but kind receptionist.
"Who are you again?"
Annie and I sink into chairs as we wait for the receptionist to call around. We hope that the rest of the experience will not follow suit. It was our mistake, but I wish there was a little more guidance for bewildered and tired parents.
Four hours have gone by. No one knows who we are. The kind receptionist sees how tired we are, and gives us a private room to wait in. TV.
Another half an hour, the anesthesiologist finally finds our room. A quick meeting and we can go home.
We get home to four messages from the frantic cardiologist.
"I think there was a miscommunication. You need to get blood drawn today."
Call two: "Still looking for you. Need to go to draw blood immediately."
Call three: "Um, the lab is closing."
Call four: "The lab is closed. Please come an hour earlier on Monday morning to draw blood and meet with the anesthesiologist."
You mean the anesthesiologist who will be leaving for a three day weekend and will not be there on Monday? The one we just met? And where is Ian's blood? In the "fifteen-year-olds" refrigerator?
Again, our bad. But.
Monday is going to be a long day.
At least that is my experience these days as we anticipate Monday.
Last night it seemed like everyone just kind of fell apart at home. Ian seemed extra fussy, Silvi threw a tantrum that would make John McEnroe proud and I retreated to one of my favorite escapes - stadium rock.
Queen. Coldplay. Chicago. Patrick Bruel. Rage Against the Machine. Midnight Oil. And, because my wife is reading, even Abba. (The first step toward recovery is admission).
Last night it was Robbie Williams Live At Knebworth. The entire concert. As loud as my neighbors would allow.
I love the loss of self that the concert brings. You are one of thousands, united by love of music. It's a transcending experience.
When you're going through that "dark night of the soul," there really is no room for complex philosophy or theology or even deep conversations. I have barely touched the books on Down syndrome that I bought. That's for another day.
Today, it's What About Bob and Robbie Williams and Die Hard XXIVIIIVIXX and books like The Devil Wears Prada. Yes, I read the book. And saw the film. (I'm secure in my masculinity. I've got some married friends who like cheerleading films such as Bring it On; you know who you are.)
God knows that we're wired this way. That's why He gave us the Psalms.* Simple, yet deeply profound. And an easy read when that's all you've got the strength for.
Whatever you think of Mr. Robbie Williams, he gave me an hour-and-a-half of joy last night.
*I love how this Psalm is almost a mirror of what Christ prays in the garden. "Remove this cup." then "Your will be done."
I will update everyone about how Ian's pre-op examination goes this afternoon.
Thursday, October 11, 2007
Children's Hospitals and Clinics
Minneapolis/St. Paul, MN
2525 Chicago Avenue South
Minneapolis, MN 55404
Heart defects come in all types, from minor to major. Defects can occur inside the heart or in the large blood vessels outside the heart. The heart defect may need immediate surgery or may be able to safely wait for months or years. In most cases, the timing of the surgery will depend on how sick the baby is.
The heart defect may be repaired in a single surgical procedure or may require a series of procedures. Surgery may involve opening the heart to repair defects or repairing defects of the blood vessels.
An incision is made on the side of the chest, between the ribs (thoracotomy) instead of through the breastbone (sternotomy).
It is sometimes necessary to use tubes to re-route the blood through a special pump (heart-lung bypass machine) that adds oxygen to the blood and keeps it warm and moving through the rest of the body while the repair is being done. This machine does the work of the heart and lungs during the operation.
Heart surgery for children requires a specialized team of health care providers:
- Pediatric heart (cardiovascular) surgeons
- Pediatric anesthesiologists
- Pediatric heart-lung (cardiopulmonary) bypass pump technologists
- Pediatric surgical nurses and technicians
- Pediatric intensive care physicians and nurses
Heart surgery requires intensive and extensive monitoring, treatment and coordination by the entire team. Heart surgery for children may take as many as 12 hours in the operating room.
After heart surgery, the child will be moved to the intensive care unit (ICU) to be constantly and closely monitored and treated for several days. During this time the child will have the following:
- A tube in the airway (endotracheal tube) and a respirator to help with breathing. The child will be kept sleeping (sedated) while on the respirator.
- One or more small tubes in a vein (IV line) to give fluids and medications.
- A small tube in an artery (arterial line) to measure the blood pressure.
- One or two chest tubes to drain air, blood, and fluid from the chest cavity.
- A tube through the nose into the stomach (nasogastric tube) to empty the stomach and give medications and/or feedings for several days.
- A tube in the bladder to drain and measure the urine for several days.
When I lived in the East I used to take day trips along the coast, going nowhere in particular. I liked getting lost. Driving without a map, stopping when I was hungry or saw a bookstore that looked interesting. Taking unmarked back roads until they gave way to small coastal towns.
I no longer like being lost. And I would pay good money for a map to guide us through these next few weeks.
Wednesday, October 10, 2007
Michael Palin recently released some of his diaries to the public. They cover the late sixties and early seventies when he was a young father and Monty Python was taking over the world. I got to know Palin through his various round-the-world television series, which led me to the Python films and Flying Circus sketches.
I thumbed through his diaries at our corner bookstore over lunch today. He's an entertaining writer and has a gentle way of capturing the days. But unless you know the people he references or have an intricate knowledge of the Python era, it's really not all that interesting. Perhaps I chose a bad place to start. I really like Palin, so I'll buy his book for a discount and give him a little more time.
But I also am a huge fan of Malcolm Muggeridge. His book, Jesus: The Man who Lives is a masterpiece. But when I read his diaries, or at least gave them my best shot, I was bored to tears. However, Gregory Wolfe's biography on Muggeridge was hard to put down.*
Why are biographies (and the occasional autobiography) so much more interesting than diaries? (I'm making a broad generalization here.)
I think it may be, in part, because we cannot see ourselves by ourselves. That is why there are four Gospels. Four perspectives. My own diaries only capture a part of who I really am. My "biographers" (friends, family, wife, children, etc.) are just as important in shedding light on who Tom the man is.
We only come to truly know ourselves through the eyes of others.
*Palin and Muggeridge met once on a televised discussion concerning the film The Life of Brian. Muggeridge was upset by what he considered some of the "blasphemies" in the film. He and Palin did not get on together. I think Muggeridge needed to lighten up a bit.
Tuesday, October 09, 2007
Before Ian was born, Annie was diagnosed with a genetic disorder that has meant she has had to take a blood thinner for the past six weeks. The doctors are concerned that Ian might absorb some of the drugs through Annie's breast milk, and so are contemplating having Ian go on formula for the next week or so during his heart surgery. Or Annie may have to wean off of the blood thinners.
She's had a lot on her mind these days. So it didn't bother me when she called me at work to let me know that she had somehow flushed a chicken breast down the toilet. Or that the plumber couldn't get it out. Or that we had to get an entire new toilet.
These days, a chicken in the toilet sounds pretty normal.
If you come from a Protestant Christian background, then you owe a lot of your involvement in the political arena to the late Francis Schaeffer. He, more than just about anyone, paved the way for the Moral Majority, the Religious Right, and Conservative Evangelicalism as we now know it. Read up on him; it's a fascinating subject, even if you don't care about politics.
I have a history in evangelicalism that I won't expand on here. As with any cultural heritage, we all have some baggage that weighs us down. When I was in college and learned that some of the things I always took for granted may or may not reflect reality best, I started looking for some mentors, writers who could help me come to grips with some of my spiritual struggles.
That's when I discovered the work of Francis Schaeffer's son, Frank. I found his book Addicted to Mediocrity, a short book that gave me some new categories to think in:
(It) shows how Christians today have sacrificed the artistic prominence they enjoyed for centuries and settled instead for mediocrity. The evidence for this sad state of affairs abounds. We are flooded with "Christian" doodads, trinkets, t-shirts, bumper stickers, etc., that use God's name as an advertising slogan--"Things Go Better with Jesus"--putting the Creator of the universe on the same level as soda pop! Moreover, Schaeffer writes, "Whenever Christians, and evangelicals in particular, have attempted to 'reach the world' through the media--TV, film, publishing and so on--the thinking public gets the firm idea that, like soup in a bad restaurant, Christians' brains are best left unstirred."Frank Schaeffer is an angry man. But the ideas in his books have helped me come to terms with some of my own "anger" with my cultural background. I laughed (and cringed) all the way through his novels Portofino and Saving Grandma, although they more than hint at his continued anger toward the faith of his father. His latest autobiographical book, Crazy for God, (reviewed here and here) due to be released in a few weeks, is sure to stir the waters. His father is an icon in certain circles, a secular saint.
I'll be the first in line to buy his new book. If you look past all that anger, he does have something important to say. And I think, if we let him, he can help us learn to laugh at ourselves.
Monday, October 08, 2007
As I mentioned in a previous post, one of the few poets who speaks to me is the sad Catholic Francis Thompson. Thompson wrote almost all of his poetry during the four years of his life when he wasn't consumed with his addictions. My dad introduced him to me by way of his most well-known poem, The Hound of Heaven.
I found a book of his poems in a used bookstore years ago. A few months before Silvi was born, I stumbled across the poem Little Jesus. It touched me with its sweetness.
The four of us went out to Stillwater on Saturday, a gorgeous fall day that felt more like summer than October. The town was packed as is often the case, especially when the colors of the changing trees are at their peak. Ian took in all the new sights and Silvi ran and jumped, more fascinated by the spiders along the river than anything else. We stayed until it was dark, watching the river boats, lit up like Christmas trees, make their way up and down the St. Croix river.
On Sunday we attended the Buddy Walk, a last minute decision - literally. I'm not big on gatherings and Annie was afraid that it would be too much too soon, but at 10:30 we decided to attend the 12pm event. We didn't participate in the 1-mile walk. We ended up parking nearly a mile away, and Ian was screaming for food when we finally arrived. While Annie found a secluded spot to feed Ian, Silvi jumped in the bouncy castle and stalked the clowns, giggling. The event must have been attended by over 1000 people.
And so the milestone is this: Life does not end with a Down syndrome diagnosis. Our family time by the river on Saturday was just as meaningful with a son with Down as it would have been otherwise. Seeing all the children playing and laughing at the Buddy Walk gave us a glimpse into a possible future for Ian.
Life is good.
Friday, October 05, 2007
Thursday, October 04, 2007
It was last night. Silvi and I were at our local park, she having run the entire three blocks there while I followed on my mid-life crutch, the new skateboard. (Jim, if you read this, you should be proud. I've actually used the thing three times so far.)
So there we were, Silvi dripping with sweat and me looking like I just survived a massive heart attack, when a young girl ran past me who obviously had Downs. She joined another group of kids running around a baseball diamond with their mother. A man, who I assumed was the little girl's father, stood off in the distance watching.
If you ever get to know me, you will know just how out of character my following actions were. The young girl with Downs left the group and went to join another girl shooting baskets. Nervous, I summed some courage by asking myself, "What would Barbara Walters do?" and then had Silvi go run with the kids while I approached the little girl's mother.
Me: "Umm, Hi, I'm Tom. Is that your daughter over there? I noticed that she might have, umm, Down Syndrome?"
Mother: "Uhhhh, I think he's a boy, and he just sort of started running with my kids. I'm not sure who he belongs to."
Another very long pause.
Me: "Oh. I thought it was someone I knew. I mean, well, my son was just born. My son is Down, has, Down Syndrome and....."
I trail off. She kicks the dirt. I excuse myself and call out to Silvi. I stand there, holding my skateboard, feeling much like George Bush must feel after giving a speech on foreign policy. Then I spot the little boy riding in the back of a bike trailer.
Forget Barbara Walters. I summon the strength of Larry King and call out to the father. "Excuse me! Hello!?"
He rode back to me. Close up, it's very evident that it is indeed a cute little boy, who immediately extends his hand for me to shake. He is four and tells me his name is O. (in case I befriend the parents and they stumble across this most awkward example of my ineptness.) The father is friendly and open, and Silvi and O. giggle with each other. After a few minutes of good conversation, Silvi and I head for home.
It is getting dark. As I skate toward home behind my sprinting little girl, I am happier than I've been in over a month.
Wednesday, October 03, 2007
A receptionist's calendar. A few marks of lead on a sheet of paper.
These pencil strokes inform us that on the
His chest is so smooth. Flawless. I consider it criminal, yes, a felony, to introduce a jagged scar across such milky white and fragile skin. Like taking a blade to Van Gogh's Starry Night or Rouault's The Old King.
No, worse. Much worse.
He will be all the better for it, so they say. And I will celebrate on that day, the day when his lungs fill with the Fall air and his mended heart fuels strong legs to carry him on new adventures.
We will throw a party on that day. A ball.
But until the balloons are filled and streamers hung, we sit alone in this empty ballroom, my wife and I. We wait, and we plan, and through our tears we compose a song to play on that day.
The day when a surgeon's hand touches what I hope one day to also touch: Ian's heart.
Tuesday, October 02, 2007
Newman: It's Thursday.
Kramer: Really? Feels like Tuesday.
Newman: Tuesday has no feel. Monday has a feel, Friday has a feel, Sunday has a feel....
Kramer: I feel Tuesday and Wednesday...
Jerry: All right, shut up the both of you!
Monday, October 01, 2007
We're waiting for the call from the Surgery Scheduler today. Both Annie and I are completely exhausted from a weekend of worry and anticipating the days and weeks ahead.
I'm back at work this Monday morning, finishing up my television commercial. I met with the client on Friday afternoon and he seemed pleased with it.
It's a new month. October. Fall and Halloween and now a new occasion, at least for our family, Down Syndrome Awareness Month.
Annie was at Target yesterday with Silvi, looking at some of the Halloween costumes. Later that night she wept when she realized that she didn't look for a costume for Ian; she didn't think he would live long enough to see Halloween.
Some friends brought us lunch on Saturday. They lost a baby to Trisomy 18, a devastating genetic disorder. They said more in their actions than words. They understand.
We went out for breakfast with Annie's sister and her husband and kids. I was lousy company. Afterwards, we took the kids to Adventure Peak, one of the largest indoor play structures in the US. It's a two-story climbing structure like the one's you see at McDonald's, only this one allows adults to climb as well. It was a nice change of pace to chase Silvi through the labyrinth of tunnels and rope bridges, even if I can't lift my hands above my head today. At least I didn't break my finger like my brother-in-law did.
Ian sleeps and sleeps and sleeps. It's because his lungs aren't getting enough oxygen-rich blood. He is most awake from 6pm - 9pm, which is great because I get to be with him.
I have started reading the five books I recently purchased on Downs:
- Theology and Down Syndrome: I bought this book because I need terms and definitions. Language has the power to heal, to shape and to define. A scholarly study unlike any other.
- Life as We Know it, by Michael Berube: Too often Christians "read the end of the book" first to find out what happens. Berube is an agnostic and I'm hoping he will help me to better understand the muck between "the first and last chapters."
- Becoming Human, by Jean Vanier: Founder of L'Arche. Who understands better the practical day-to-day life of those with mental disabilities? (Other than parents, of course.)
- The Man who Loved Clowns: So far, this simple story is the most moving and profound. Funny how that is so often the case.
- Critical Reflections Of Stanley Hauerwas' Theology Of Disability: Another scholarly text that has me asking many difficult questions. I'll write more on this later.