Why I am petrified

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The whole pack was together then

“He says what we’re thinking.”

Hearing that petrifies me. I feel a panic rising and sometimes it hurts too much to move and I think I’m turning into petrified wood.

See, I’m one of those people who’ve had complete strangers come up and tell me my child would be better off dead. I’ve heard them refer to him as a “pathetic little thing” as they walk by. When my son was born with severe disabilities that affected every single part of his body, I found I pretty much had to prepare myself to hear and see anything when we left the safety of our home. When I wrote a letter to the editor of the Oregonian describing the need for services for children with disabilities many years ago, back when the paper published a letter writer’s home address, I got a letter in the mail telling me I should have had an abortion so I wouldn’t be burdening society with his existence. I saw people mocking my son’s unusual movements behind his back. I heard people laugh at him.

Over the years, especially after the passage of the Americans with Disabilities Act, fewer people said cruel things and the mocking diminished. Or went underground. I chose to believe our society was becoming more accepting of and kinder to those born with disabilities. And that we had reached a kind of civic agreement that society would include them because it was right and just and good for everybody. (Even then I was admonished by a boss to stop bringing up my son as an example of lack of equity.)

A few months ago, I watched a presidential candidate openly mock a person with disabilities, to the delight of the crowd. Later I saw a video that captured someone kicking a child in a wheelchair being removed from the same candidate’s political rally, while those standing nearby cheered.

“He says what we’re thinking.”

The candidate who made fun of the body position of the person with disabilities will soon be president. He will have the support of both houses of Congress, whose leadership have made it clear for years that they want to reduce/end/privatize government programs designed to help people who can’t equally compete in the system that promises to provide “liberty and justice” for all.

We paid the extra costs we faced to accommodate our son’s disabilities (e.g. an addition to our home with a wheelchair accessible bedroom and bathroom, a 70-foot concrete ramp, vehicles that would accommodate lifts, etc.) with no government assistance whatsoever. We did this because we knew our son was as valuable as any other person on earth and we would do whatever it took to give him a wonderful life. We gladly made sacrifices to do without things other families had. But in order to do this, he had to have access to medical care that we could not begin to afford. Insurance companies were allowed to exclude people with pre-existing conditions then. When you are born with his disability and need surgery within hours to save your life, you are never without a pre-existing condition. The marketplace does not take care of people with severe health care needs because they are not profitable.

The Affordable Care Act (Obamacare) prohibits this and makes insurance available to people who used to be assigned to high risk pools that were outrageously expensive and inadequate. Publicly funded health insurance like Medicare and Medicaid is efficient and affordable because it does not have to cover exorbitant executive salaries, huge advertising budgets, and maximize profits to shareholders. That’s why large group participation and government requirements are needed for those the marketplace will not support.

If these health care needs are not met, people die. In other words, they are aborted after they are born because their existence is deemed too much of a burden to society.

I lost my son nearly two years ago, as his health challenges were finally too much for his body. I miss him so much I can hardly make it sometimes. There is a hole in my heart that will remain the rest of my days.

I’m not the only one who misses him. While he was here, he made the world a far better place.

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The day Free Geek celebrated Blaine’s 10th anniversary

Blaine worked at Free Geek for more than 11 years, teaching people who couldn’t afford to buy computers how to build their own for free. This is what the person who was his supervisor wrote me on what would have been by son’s 37th birthday last summer:

“Not only did it turn out that Blaine was interested in teaching, but what was incredible and so out of the ordinary at Free Geek at the time, was the way that he did it.  He was so generous with his knowledge, as well as so kind and patient.  He never belittled a person for not knowing something, or for making a mistake.  If someone needed extra help, or extra time, Blaine never was frustrated. He stuck by that person and worked with them, with kindness and encouraging words, until they got there.  He was open and giving with all that he knew. 

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The Blaineversary cake

 

Blaine quickly became a star. Volunteers loved him. They felt comfortable asking questions and asking for help, when in the past they would often get gruff responses, or actually yelled at for doing something incorrectly.  I know it to be true that Blaine was the number one factor for volunteer retention in the Build Program. Not only that, but with his kindness and generosity the culture at Free Geek started to change. People started just being nicer to each other. When people are treated with kindness, they too start being kind to others. It is infectious. This is what Blaine brought to the organization.  It became a more welcoming and kind organization. It became a place where anyone could come to learn and not be afraid to do so. I have heard you say how much Free Geek meant to Blaine, but I want to make sure that you know how much Blaine meant to Free Geek, the organization.  He changed it in such a profound and positive way. He made Free Geek into the organization that it set out to be.” 

So you see, he and others with disabilities are not a burden on society. Mocking them is a travesty and should bring so much shame to the mocker that he dares not show his face until he apologizes and convinces us it will never happen again. If given a chance to be, people with disabilities can make all of us better. Just like all of us can. But what kind of world do we live in when a mother feels she has to justify her son’s existence so he gets to have one?

The world where “he says what we’re thinking” now feels like a death sentence.

People with disabilities are not the only ones petrified by “he says what we’re thinking.” I write this because it is what I know best. Please listen to all the petrified. Think about what they are all hearing and feeling. You may not be in any of these vulnerable positions right now, so please find it in your heart to imagine if you were.

I can’t see and hear “he says what we’re thinking” any more right now. To survive, I have to take a break from television, Facebook, twitter and other places that scare me to death. I hope to be back sometime, but for now, I just can’t anymore…

 

This is the universe speaking. Are you listening, Marie?

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I know the universe is talking to me. And I’m listening, but I need help figuring out what it’s trying to say. These are the things that happened when we tried to take our first ever undeadlined trip in our RV Rigby this week. Yeah, it didn’t go so well. I’m writing this from my sickbed.

1. Last week, I didn’t feel good all week. Had a sore throat and a cough. But mostly just wiped out. Still managed to do all the things I had scheduled for the week, but otherwise just felt like dried snot. However, I thought I was back to my old self by Sunday, and was good to go.

2. I found all the paperwork for reservations and background material I had gathered for the scenic drives. But had the nagging feeling I was forgetting something and I just never felt all the way ready, if you know what I mean.

screen4web3. The evening before we left, I dropped my four year old iPhone and the screen shattered. Now mind you, I got my first iPhone the day they became available in June 2007. I didn’t exactly wait in line, because when I saw the line in Pioneer Place, I decided we should eat dinner and come back later. Which was just as the line was tapering down, and they still had phones! I’ve dropped my phones a bazillion times, at least. They never got even a ding in all the prior drops. Yes, I do use one of those small bumper cases on it. But this time it fell screen first on the edge of a Fiestaware plate. Believe me, you do not ever want to go up against Fiestaware. That shit is solid as the Pre-Cambrian shield. (Geography nerd joke, don’t worry if you don’t find it funny. You pretty much had to be in a Geomorphology class.)

4. We were on a tight timeline for leaving Sunday so I didn’t have enough time to make a reasoned purchasing decision or Apple Store encounter before we left, so I decided to make do by getting a clear cover to hold the glass screen pieces in place and protect my fingers from the sharp glass blade edges. Mind you, this was not even an adequate stop gap measure because the screen cover made it hard for pressure to be detected by the phone and there were psychedelic picture shows whenever I pressed down on anything. I pretty much gave up trying to type and depended on Siri for pretty much everything.

5. We went to my dear brother’s 64th birthday/retirement gathering and all was well. Afterward, we went to my mom’s to spend the night in Rigby outside her house. All of a sudden, I felt like I was going to collapse and laid down and the next thing I remember is regaining consciousness a few hours later. Felt much better but it was so weird.

6. Started coughing again that night and Ric said, are you sure we should do this, and I said, yes, the clear forest and mountain air is just what I need.

7. Had three warning dreams Sunday night. The warnings were about three really different things, none about camping, but it felt like they were all delivering the same message: Do not go about your business as you have been. Watch out and be very careful. Danger lies ahead and you don’t even know it.

8. Monday morning, all the outside electrical source power in Rigby suddenly stopped working when a circuit breaker blew in mom’s house. Nothing Ric tried restored it and the lights showed we weren’t getting anything in. Whatever that means. My cough was getting worse.

9. When we stopped to get gas, some got on Ric’s shoes, and my cough got ever worser.

10. The ride over the hills along the road and river where I grew up was wonderful and the air smelled so good. Hope was rising! But nothing from my childhood really remained. It’s become a ghost town. Well, it was never a town really. It’s a ghost zone. Businesses gone. Buildings boarded up. Structures collapsing all around. The whole place is actually for sale. It’s hard to see a future there. It felt really ominous.

craterlakeforweb11. We made it to Crater Lake early afternoon Monday and it was just as stunning as I remembered. The weather was beyond gorgeous. I sat and stared into the blue. Loved watching Ric see it for the first time. But after walking a few steps, I had to sit down and rest because I was out of breath. Must be the altitude, I thought. Been at sea level all these years, I forgot how to act at elevation.

12. Even though it was the off season, we had to wait quite a while for dinner. During dinner, my voice went missing. You could watch it happen in slow motion.

13. We had no cell phone coverage whatsoever. AT&T, have you not yet discovered areas outside cities? Wifi was expensive. A private company charges for wifi in national parks? Seriously? But never mind, because a phone with a screen so broken you can’t really touch it isn’t all that useful when you don’t have a voice to talk to Siri.

14. The more my voice went, the more my cough came. I’m sure it kept poor Ric from sleeping too. My throat started closing up and my chest was tingling all over. At 2:30 am, he sat up and said, “We need to get you home. You stay in bed. I’m driving us now.” I didn’t object. Objecting is hard when you can’t make a sound.

15. On the way home, Ric called my doctor’s office, only to learn the whole building had flooded and they were in crisis mode. He tried to get an appt at urgent care that takes Medicare, but appts were booked for two solid days. So we went to the ER. It was so busy that they were no longer accepting ambulances. Several hours later, the person who saw me asked, “Did you try to call your doctor instead of coming to ER?” and I tried to explain about the building flooding but that’s really hard to do without a voice of any kind. I tried to mime it, but she just said never mind.

15. I’m on my second day of bed rest and it, along with codeine cough syrup, is starting to help. I still can’t make sounds, but I can type. I had to write this down because someday I will forget that this many things can go wrong at once and run the risk of rinsing and repeating.

I know you’re talking to me universe, but what is it exactly that you are trying to say? Don’t ever leave home? Don’t even think of taking an actual real vacation? The end is near? You’re out to get me? I need to learn yet another hard lesson? You’re messing with my mind?

It feels like you’re being a little passive aggressive here, universe. Can you please just put it into a plain old sentence, using direct words with unambiguous meanings? I’m getting too old for this.

As the crack widens…

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The crack in Blaine’s ramp is widening. A companion is beginning to appear at an extrapolated line in the next segment. I wonder what is happening beneath the surface. Surely there is something going on down there.

Some 15 years ago, downslope from the ramp, a deep hole suddenly appeared in the parking strip next to where the driveway lowers to meet the street. A woman walking her dog stumbled when her right leg disappeared into it. Later, Ric poured potting soil into the hole. After several bags had been swallowed, it reached a state of equilibrium and has been level ever since. It still holds up, even when you step on it. But i keep a watchful eye.

When the crack in the ramp grew to a width that couldn’t be ignored, I wrote to the city. I raised a question of perhaps some kind of underground leak from the water main or sewer pipe, with the resulting flow carving out a cavern under the street. I told them about the potting-soil-swallowing hole just downslope too.

The city never responded. I wonder if the web contact system they use actually works. I wrote to a woman in another city department about another issue and never heard back from her either. Maybe my name has gone on to an internal list of people who write to the city and should be ignored, like they used to check your name against a list of people who had written bad checks at the grocery store.

The cracks in the driveway are expanding as well. My concerns continue to grow at the same pace. I have a sense of a coming calamity. That surprises me because I can’t imagine a calamity worse than the one we experienced a year ago. Nothing can be worse or even as bad as Blaine leaving us too soon. Shouldn’t the cracks have stopped growing then? I’m certain his passing made the earth wobble.

My geographic training takes my mind to the Big One that is coming. Later today or in 300 years. Nobody knows when. So we live our lives with that in mind while we yearn for understanding and acceptance. That’s what I’m still seeking from the calamity a year ago.

I didn’t see that calamity coming, though others have told me it was to be expected. I didn’t expect it. Would I have lived differently if I had? I don’t know. How could I?

I do expect some calamity to come of the crack in the ramp. And I’m trying to waylay it but so far my actions have come to naught. I have visions of my car resting at an uncomfortable angle of repose at the bottom of a sinkhole that swallows part of our street.

I guess I shall try the city again… I think they should burrow one of those snakes with a camera on the head to check what’s happening where we can’t see. Maybe we could avoid a sinkhole calamity if we nipped it in the bud.

That won’t really do much about the larger calamity it could be warning about… are we safer in the long run with such a visible caution? Only if we figure out what to do, I’m guessing. And only if there is something that can be done.

Is is better to know what calamities are coming? Or to just live and have them clobber you out of nowhere and try to survive the aftermath? Is this a question for an engineer? A geologist? A fortune teller? Or the knowing that lives inside me?

Maybe I’m cracking up.

My 2015 Baseball Observations

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So I don’t follow baseball (I retired from the game on principle when Curt Flood did), but I share a home with a sports-watching dude-hub. So I can’t help but absorb some of it from time to time.

And when I do, I notice things. Probably not the things everybody notices. But there they are, just lying there waiting to be shared.

Here goes:

  1. I think somebody did something funny with the ball or the bat in the off season because what is with those high scores?? Many many double digit scores. Like 22-11 or something. That’s a respectable football score, that’s not a baseball score.
  2. Some of the uniforms are just complete puzzlements. Like I swear I saw a team wearing tunics and pedal pushers the other day. If you are under 50, you have no idea what pedal pushers are, I know. I didn’t witness it myself but someone tweeted that a team was wearing onesies in a game. Surely a sore for sight eyes.
  3. It also seems that players are muddying their uniforms more often than I remember in the past. What’s going on? More sliding into base? Have we achieved kamikaze baseball? Where’s Dick Harter?
  4. Baseball players are getting really really big. Massive. Like Sequoia tree big. Some look like football players. Now that there are tests for performance enhancing drugs, is there some kind of breeding program underway?
  5. There are a lot of empty seats in the stands for many games.
  6. With the little box that shows exactly where the pitch crosses the plate, video review of calls of plays on the field, how much longer till we have robots for umpires? I don’t see umpiring as a career of the future.
  7. I don’t really approve of rule changes in baseball. Partly because I’m old school and it just doesn’t seem right to change things. I’m looking at you, designated hitter. But partly because I’m old and I can’t remember the changes. Like I was going to comment on one here but, see, I can’t remember what it was. Your loss.
  8. On the subject of rule changes, stop trying to speed up the game. I like the leisurely pace because it’s possible to relax and enjoy the view. Talk to your seat mates. Be mellow. Calm down. I don’t know why everything has to be so quick quick wiki wiki every minute of the damn day. Allow us at least one option during which can be enjoyed at a Mary Jane mellow rate of speed.
  9. I love how international baseball has become. It seems like a lot of the best players increasingly come from other countries. Wonder how long it will be before they stop coming to the US to play because the game will be more popular and well attended in their home countries.
  10. Have the Mariners set a record for blowing leads this season?

I think there were more, but I forgot what they were. Maybe I’ll add them later. Or not. Talk amongst yourselves.

The Whole Nine Yards

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I’d like to bring up a point that I haven’t seen in the discussion of the demolition of homes in Portland, to be replaced by gigantic houses or apartment buildings that use up pretty much every square inch of buildable space on a lot. In the interests of density, we are told, we have to build structures as large as we can to house as many people as we can. I get that increasing density inside the city can avoid increasing the extent of the urban growth boundary and eliminating farms and green space.

But here’s the thing. I spent a lot of the last year and a half studying and writing about Portland in the book–Pieces of Portland: An Inside Look at America’s Weirdest City (see piecesofportland.com)–that was published in June. While doing that, I thought a lot about what makes Portland such a special place to live.

One of the best things about Portland are the yards surrounding houses in our neighborhoods. We live in a gardening mecca. Our long growing season and temperate weather make for more gardeners per capita than most any other place. In my Buckman neighborhood, there’s been a big move away from lawns to other kinds of plants, some ornamental, some food-producing, some that are both. Walking along our neighborhoods’ streets, we are treated to a variety of beautiful sights…flowers of all colors and sizes, green leaves that turn crimson and copper and gold, an array of flowers and seeds and fruit that attract birds and bees, beautiful bark in winter, and so forth. And the fragrance when plants and trees bloom! Have you swooned under the spell of the scent of Linden tree blossoms lately?

The temperature under a canopy of trees on a hot summer day can be double digits cooler than a street without trees and provide great relief, especially in a summer like the one we have going this year.

When the houses are demolished, the yards go as well. Oh maybe there’s a little strip of ground around the edge of the giant new building left, planted with boring contractor plants that all look alike and hold little interest. Or not, as is the case in the multistory apartment buildings that are rising in our midst. And neither do these buildings accommodate the big old street trees, whose canopy extends from the middle of the steet and over the more modestly-sized house that has been affordable to so many Portlanders up until now.

When Portland loses perfectly fine old smaller homes, it also loses the greenspace that makes neighborhoods livable. I bet someone smarter than me could calculate the net increase of carbon dioxide when that happens… all these plants consume carbon dioxide and produce oxygen. Some plant-filled yards in Portland actually might qualify as carbon credits.

A Portland without yards is hard for me to imagine. It would be a completely different city, by any yardstick.

They are disappearing a yard at a time, and if we don’t watch out, before long it will be the whole nine yards. And that bothers me as much as the loss of homes because they are so closely connected.

As the page turns… in the real Portlandia!

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Go ahead and judge this book by its cover.

Go ahead and judge this book by its cover.

Grieving is hard. It’s long. It does you in. It doesn’t end. Some days getting out of bed is the most courageous act you can imagine. And accomplish.

I already know I will be grieving Blaine the rest of my life. You have no earthly idea how much I miss him. Just to exchange one more glance, I would give everything. To see him smile. The universe for one more hug. The chance to say goodbye.

In what now seems clearly a survival strategy, I actually managed to finish the book I was working on when Blaine left. I dove headfirst into a deep and consuming project. Not only were the words my responsibility, but also the design and layout. And know this: when the author does the layout, the words seem never to be finished. Catch that typo. Use a different turn of phrase. Put in that cool thing you forgot. So it takes longer than it takes. (Credit to an old friend, Paul Nyrczinski, for that aphorism: “Things always take longer than they take.”)

But it finally got printed. And delivered to us. You can see a video of Joyce and I opening the first copies here. And we have a real live website and everything, look here.

Since the shipment of three pallets with 2,500 books arrived, we have embarked on a marketing campaign so we can sell the books and recover our costs. Yes, we self-published. It’s our very own necks on the line.

So far, in addition to purchasing the book from our website, you can buy it in a growing number of retail locations. Powell’s Books, for example (all stores except the one at the airport)! Did you know you can order from Powell’s online and pick it up in a store without any shipping cost? Or you could buy two books and they would be shipped for free!

The book is also available at a number of New Seasons Markets. Multnomah County Library has it (OMG, all copies are checked out right now, they better order more!!). Other bookstores like Broadway Books, Reed College Bookstore. Quite a few quilt/fabric stores: Cool Cottons, Fabric Depot, Pioneer Quilts, The Pine Needle, A Common Thread, Greenbaum’s Quilted Forest, The Cotton Patch.

And soon it will be in Made in Oregon. And who knows where all. We are relentless in our marketing efforts. By the end of this, we should be able to write a book about marketing a book. Not that that’s never been done.🙂

We are proud of our book. We think it will appeal to a whole lot of people:

  • people who live in Portland and want to discover what they don’t know about their home town
  • people who visit Portland (or want to) and want a tangible record of their experience that goes way beyond a phone full of selfies,
  • quilters who have always wanted to see quilts in a leading role, and
  • every person not in the above categories

So we think you might fit in there somewhere. Check it out!

My Sweet Blaine

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After Blaine’s celebration of life with an overflow crowd at the Wonder Ballroom, I pretty much collapsed. When someone passes away, there is a lot of work to do, tasks to get through, it’s a bit of a whirlwind for a while. I got through those first days using up my lifetime supply of adrenalin, and it has been a rough road since then. Losing a child is the worst kind of loss I can imagine, and losing Blaine was the worst of the worst loss. We were together every day and were so very close. I truly believe he is the best soul I’ve ever known.

There are many times I am just stunned with grief. I still don’t totally believe he will never be here again, sometimes I’m convinced that  some kind of horrible mistake has been made and he will be found. His room is exactly as he left it, so it is ready for his arrival.

There are times feel I’m getting better, then I am slammed with some realization–like I’ll never get to talk with him again, for example–that leads to uncontrollable sobbing.

I have returned to working on the book, for a month I couldn’t bear to even look at the document on my computer. But Blaine was so very excited about the book, he read it as I went along, made suggestions, and couldn’t wait till it was finished. So I’m going to finish it in his honor. And hope he is still following along, somehow, someway.

I’m going to start talking a bit about the book here, but before that, I want to share Blaine’s eulogy with those who weren’t able to attend his memorial. It’s pretty much the only thing I’ve written besides the book in several months, maybe close to a year.

Even though it was one of the hardest things I’ve ever done, I felt I needed to be the one to do his eulogy, because I know him better than anyone, and I wanted to make sure everyone had a chance to know just what a wonderful, awesome human being he was. And is.

I haven’t been ready to share it until now. So I hope this is a good sign.

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Eulogy for Blaine Deatherage-Newsom

July 21, 1979–December 31, 2014

Even though most of you are probably convinced I have lost my mind trying to do this today, and it will be very hard, I want to stand before you today to express gratitude and make sure I’ve done my best to let you know Blaine. Because I know Blaine best, I must try to share him with you. And I’’m going to need every bit of love and support you can send up to me to give me strength to get through this.

First, i’d like to thank the person who invented sleeping pills, because without them my mind might be here but my body wouldn’t. that’s how hard it’s been. there’s no sugarcoating what we’ve been through in the final hours of 2014 and early days of 2015.

As those of you who know me best know, Blaine has been the center of my universe for 35-1/2 years. I feel I knew him at some soul connection level from the moment i looked into his eyes after he was born, the few moments i had with him before he was whisked away to the NICU at Doernbecher for surgery and intensive care. I saw the entire universe in those eyes that day. It was something I can’t even express. Just know that I knew instantly that we were meant to be together.

There are so many people to thank, there’s really no point in trying to name them, I’m sure the music would have to play me off the stage like this was the academy awards. He got great early care at Doernbecher Hospital, and then Shriners Hospital, I want to especially thank the late Dr. Tony Gallo, both for the surgeries he did and the humanity he expressed as he promised that everything would be done to ensure Blaine’s survival. He provided a confidence so badly needed at that time, as there were some whisperings around and about that the kindest thing is to let such a baby die. When Dr. Gallo came on the scene, those words were never uttered again, for which I am profoundly thankful.

Because Blaine enjoyed life more than anybody I’ve ever met. And if you think you know how good Blaine really was, what a pure soul he was, what joy he felt, please multiply that times infinity and then do that again and again and again until you fall asleep and then you might be getting close. He was the best human being I’ve every known or known of. Just pure and utter goodness.

He saw the good in everybody. Absolutely everybody. No exceptions. Well, Ted Bundy never came around, thank goodness, but I wouldn’t even rule that out.

Blaine’s early years were full of joy and fun, he had many friends who loved him to bits. I’ll never forget the first parent teacher conference with his kindergarten teacher. She told us that many parents had asked her who Blaine was, because their children were always talking about him and how much fun he was, how much they enjoyed him. When the teacher told them, “He’s the boy in our class in a wheelchair,” the parents were shocked. Stunned even. Their children had never even mentioned that. My heart soared like a hawk, and I took that as a sign that our society really had changed and if all children of all shapes, sizes, colors, etc could just be in a place like school together, and grow up with the feeling that everybody belonged, the world would be exactly like the one I wanted to live in.

Well, over time, that didn’t hold, because as he got older, his friends went on to other things, he met students who hadn’t grown up with him and he was increasingly overlooked, left out, and there was cruelty. Some of it was overt. But much of it wasn’t mean spirited, he just couldn’t keep up with their movement and somehow they didn’t notice he was left behind or know how to include him. I remember one day I spent going from class to class with him in middle school, how I cried myself to sleep that night, and how I understood why parents decide to home school their kids.

High school was really hard. Our neighborhood school wasn’t accessible, so he ended up going to a very large one on the other side of town, where many of the students lived very privileged lives. It wasn’t really accessible either, but Portland Public Schools called it so because it had a freight elevator. It was too heavy for Blaine to operate alone, so he had to wait until a student came to assist him, then still try to get to class on time. His junior year, I think he was under so much stress that the stutter he had when he was very young came back. Not only did Blaine have regular classes at school, he had speech therapy, physical therapy, occupational therapy…. just so much work.

One day I took a book he had forgotten at home to him at his high school, it was lunchtime, I went to the cafeteria and looked around the mass of perpetually moving, laughing, teenagers and finally spotted him. All alone at a table meant to seat a dozen or so… most of the chairs had been removed from his table to join bigger groups at nearby tables. My heart broke into a thousand pieces. How, I wondered, does he have to strength to endure this? How much can one child take all this and still love themselves and find joy in the world? I don’t know the answer but Blaine did. Because not only did he find a way to survive this, he found more authentic joy in life than anyone else I know. Or ever will know.

When he was about two, a neurosurgeon (not Dr Gallo) had estimated his IQ to be around 50. When he was young, there was all sorts of talk by professionals about how he was likely very developmentally delayed. But when the experts told me this, I told them about South America. While changing his diaper, he soon tired of the “where’s your nose?” “where’s your forehead?” game, so we started doing the countries of South America on the giant map of the world wallpapered to the wall beside his changing table. And he learned them all by the time he was 18 months old. Including the galapagos islands. I was one of those parents who obsessively sought out every last bit of information available on spina bifida, making list after list questions of doctors and other specialists. It took two years before I had the courage to ask the only real question I had: “How long will Blaine live? How long do we get to have him.” The answer: “Barring something unforeseen, there’s no reason to believe he won’t have a typical lifespan” gave me a lot of comfort, even after i realized it was something that applied to everybody. Typical lifespan were the words I chose to hang on to.

When he was in kindergarten, I taught him to play chess. Well, as he always pointed out, I taught him the moves. He learned chess from books. When he was in 8th grade, he played in a tournament that ended in him becoming chess champion of his age group in Oregon. Here’s the ironic twist. During a break in the action, which was held at the World Forestry Center, we went down to OMSI, located where the children’s museum is now… they had a medical ethics exhibit at the time, and the question posed was whether a child born with spina bifida (the description of the baby sounded a lot like Blaine) should be saved by expensive medical treatment or allowed to die. I guess you know how both Blaine and I voted. But we couldn’t help but notice the baby was losing the popular vote.

After surviving high school, there was no way Blaine wanted to face college. He was smart enough, but high school had taken such a toll on him. He was a bit adrift. Thank god for the Internet… he had very active online relationships, in fact often people treated him with more dignity and respect there than in real life, actually, because they had no idea he had any kind of disability. Noted author, thinker and teacher Howard Rheingold wrote some columns about that, and used Blaine as an example of the amazing power for good the Internet could be in testimony before Congress.

He still had all the therapies he was supposed to be doing every day. Just so much work. He didn’t enjoy it, I hated nagging him about it, so we made it a big priority to put fun on the calendar. I think the times Blaine loved best were the trips we took, because they always turned into adventures. Which provided us with endless hours of stories that were told and retold over the years.

You have to understand, I was a single parent, we had very little money, so we did all our trips on a very low budget, not staying in the best places, etc. And quite simply, to pull things off, we had to rely a whole lot on the kindness of strangers. We sometimes needed help to get Blaine into buildings, for example. But we always found that kindness, every single time. Like the time we went to Philadelphia so Blaine could play in the World Chess Open… a trip that was a gift of a man we met through the Meyer Memorial Trust, a most generous and kind man as you’ll ever meet. When we went on a bus tour of the city, I think Blaine and i were the only two customers, the bus driver carried Blaine in and through every inaccessible place, including the Betsy Ross house, where she made the flag. If you’ve ever been there, you know it’s really hard for an able bodied person to make it up and down those narrow steep stairs. But that bus driver took Blaine to every corner of that house, and you could tell he considered it a privilege.

When Blaine was 16 we went on a trip to Chicago, where we encountered adventures from the moment we landed. I jogged down to the L station at the airport to make sure it was accessible, only to be told that the L only had two elevators in the entire system and one was broken. So we could get on the L, we just wouldn’t be able to get off. Somehow we convinced an airport shuttle driver to let us on, hauled his wheelchair onto made it to our hotel. The first day we headed out to Grant Park and the Aquarium. When we finished there, we were heading to the Sears tower, but we were exhausted so we called a cab. A cab came but we weren’t able to get his wheelchair collapsed enough so it would fit in the trunk. We asked the cab driver if he could call an accessible cab for us, and he told us there were no accessible cabs in Chicago. Unable to believe our ears, we said there had to be, we’re from a small city and this is Chicago! He said there were only two cities in the US that had them: Boston and Portland.

That’s when we figured out we were going to have to walk and roll to the Sears Tower and all the way back to our hotel on the north side. On our way back, we passed a street fair and saw a table for disability services in the mayor’s office. We took a business card, thinking it might come in handy. When we collapsed back into our room, we took out the map and found out we had walked/rolled more than eight miles that day.

So the next morning I called the mayor’s office and talked with a very kind man. He admitted there was no real wheelchair accessible public transit in Chicago. When I asked him if we were going to have to walk to Comiskey Park, he decided to help us, and given our circumstances, he did an emergency signup of some kind of accessible van service. Later we figured out it was what transports people with disabilities and very low incomes to medical appointments, mainly for kidney dialysis. We met some very nice people on those vans.

Sure enough, the next morning a van with a pull out lift pulled up to our hotel, we got in and started off down Lake Shore Drive, heading to the Field Museum. After a few minutes, one of the guys sitting in the seat we were all wedged into said, “Are you the people who called the mayor’s office?”

Ok, so apparently Chicago is a small town too. We were going to the Field Museum so Blaine could see the dinosaur skeletons, among other things. We asked the driver to please drop us off at the accessible entrance. He pulled around to the back of the building, there was the biggest and steepest ramp I’ve ever seen in my life… I asked him, “Are you sure this is the accessible entrance?” He said, “absolutely, ma’am, i’ve dropped lots of people here before.” so we went for it. First there was about an 8 inch gap between the ramp and the sidewalk and once I managed to get Blaine up on it, I basically had to walk backward pushing his wheelchair with all the strength of my legs to ease him up, with him pushing forward on his wheels with all his might. We were both drenched in sweat when somehow we made it to the top, of what I would say might have been 50 feet or so. “Yay, we made it” we yelled.

Then we looked down to see that we were now standing in loose gravel, and Blaine’s front wheels were sunk about five inches deep. Beyond us, for the next 30 yards or so stretched that deep bed of gravel. After we caught our breath, we went for it, tilting his wheelchair back so the front wheels were above ground and pushing with all my might with the big wheels. I have no idea how long it took us to negotiate that ground, but it did cross my mind that the museum might close before we made it to the door. We finally came to concrete! At last!!!! We were almost in! Then we turned the corner and what did we see before us? A huge staircase of a good 20-30  steps. I was about to snap. Were we being punked?? If this is the accessible entrance, what must the able bodied people have to do to get in? Complete a triathalon?

So I told Blaine to wait here, I went up the stairs, found an information desk and said, Okay, we made it up that ungodly ramp, we drug our way through the acres of gravel, and now we find a huge flight of stairs. Is this really what you call accessible in Chicago? The woman looked at me and shook her head, “Oh, for Christ’s sake, that’s not the accessible entrance, that’s what we use to get the dinosaur skeletons into the museum. If you go back down, and around the block, there’s an accessible entrance at street level on the other side of the building.” That’s when the kindness of strangers came in… I walked back down the stairs and flagged down a random guy who was happy to help me carry Blaine in his wheelchair up that flight of stairs and we spent the next few hours in the Field Museum.

That might have been when we adopted the slogan, “It’s not a vacation, it’s an adventure.” In the way National Lampoon means it.

Stories like that have entertained us and our family and friends ever since. We took other trips that had similar tales. And always included the kindness of strangers. Like the guy at the chess world open Philadelphia, Blaine’s opponent in the second round. He was 13 at the time, his opponent was so blown away by Blaine (I’m pretty sure Blaine beat him) that he and his wife took us to a Baltimore Orioles game and he actually took the week off work in case we needed transportation and tourist help around Washington DC. That’s the kind of effect Blaine had on people. Time and again. That’s why he loved his life. That’s why he was so full of joy, even though people found it hard to believe he could be.

That brings me to a couple of touchy points I need to bring up to help me and all of you. Please don’t say “He’s in a better place now” because I know as well as I know anything that his best place was here with us. I am happy for you to believe what you believe and I know you mean to comfort people when you say it, but it’s doesn’t work in this case. And please don’t say, “He’s not suffering anymore.” Blaine loved life. He loved it more than anyone I know. I’m pretty darned sure he loved it as much or more than all of you here today. He wasn’t suffering. He was living life fully and was full of joy.

So I will thank you not to say that. Just putting it out on the table, as I am wont to do.

What I mostly want to do is to thank you all for coming here to love and support us and most of all, to honor Blaine. Being his mother, caring for him, was such a privilege. There were times it was hard, especially as he grew older and heavier, but it was never ever a burden. And I think, and hope with all my heart, he never felt that any of us viewed it that way. Because we didn’t.

I want to thank Annamarie Clayville and Pat Arnold and Francesca Ervin who couldn’t be here today, for their amazing and loving help with Blaine’s care over the past few years. Blaine loved you, he loved your company, he looked forward to seeing you every day, you enriched his life so much. And you allowed me to keep working as long as I did. I know there are giant holes in your hearts too. I wish I could fix them.

Blaine’s father was very much involved in his care and life before we were divorced when Blaine was 10 and for the next 10 years, I am very grateful for that, Blaine loved him so much. I want to honor him for that and thank him.

P8033386_1For the past 15 years, there’s been another father figure in Blaine’s life. Ric, you will never really understand what you meant to Blaine, how much you enriched his life, and therefore mine, first joining us on the trip that was Blaine’s HS graduation present: a trop to Motown and the Rock and Roll Hall of Fame and many points in between. That was a risky thing, inviting you along after knowing you just a few months. But of course since it was you, there was no actual risk involved.

Installing a lift in your van, calling Blaine your son and treating him like one, taking Blaine fishing, to Blazer games, to a Seahawks game, to Free Geek and back, to casinos because, as Blaine explained to his skeptical mother, guys need to take risks, gambling was one his body didn’t preempt him from that his peers might be doing. And we remember the day Blaine rolled out of his room, and told us, in his way of broaching subjects, his gentle way of getting started, getting all his words out, a couple months before his 19th birthday that he had done some research online and found that it was legal to gamble and drink alcohol in Canada at age 19, so he made an appointment with his neurologist and arranged to go off his seizure medication so he could do that so we went to Canada a few months later. I’m so glad my mom got to go on that trip and others to follow. We had so much fun together when she was with us.

And I’m so glad we made a trip this past September, to Lake Tahoe. Yes, Blaine did some online research and showed me there were two quilt shops so I would have something to do while he and Ric gambled. We had so much fun together, Blaine enjoyed that trip so very much.

I don’t know what I would have done these last 15 years without Ric. Or what shape I would be in today without Ric. I always thought Blaine has been a wonderful filter of men in my post divorce dating life, may I pretend it never happened or admit all that did. Anyway, I was right, because Blaine was in Ric’s heart even before he met him. Ric made much of Blaine’s adult joy possible. My gratitude to Ric is endless. And the fact that his dowery included two amazing daughters Stacey and Amy, sons-in-law Tim and Gary and now six grandchildren Tim, Colin, Owen, Calla, Caitlyn and Ellery. I have six grandchildren! I was afraid I would have even one! And I just want you to know I’ll need you more than ever now. And Ric’s extended family Elaine, Tom, Julie, Cory, Angela, Max, Tessa and little sweet P.

I want to thank the rest of my family, especially my sister Sarah and brother Dave Koss, and nephew Jeffrey, who took the time and space to really get to know and appreciate Blaine and came to our side as soon as they heard. Their love and support over the past couple weeks has lifted us and carried us. My mother, who is here despite her own health challenges and risks, to honor her first grandchild, Blaine held a very special place in her heart, they had such a close and wonderful relationship. My brother Curt, who always made sure Blaine was included in family events and expresses his love in his own quiet way, who put together the slide show you saw. My niece Velvet who blew my mind by flying in from southern California to be here today. My brother Denny and Tammie who have been a wonderful example of inspiration and support by bravely facing their own challenges with love and grace and have always been there in time of need and Denny built the most kickass ramp I’ve ever seen so Blaine could get in their house at Christmas.

We have so many dear dear friends who have been with us in our hours of need… we would be here till Tuesday if I named them all, but please know you are loved and appreciated, all your cards, your emails, texts, messages on Facebook and Forever Missed. My Copettes, my new circle of strong women. Very special thanks to Grant Kruger for setting up the online memorial page for Blaine and performing so many other tasks, with love and compassion. And then there’s my friend Lynne Cartwright, I hadn’t seen in years and years who came unbidden as soon as she got wind of what happened, because her own life experience equipped her to provide us a measure of comfort that is unparalled.

The surgeons, doctors, nurses and others at OHSU tried so hard to save Blaine’s life when things went so wrong so fast, they had tears in their eyes along with us. We are so very fortunate to have people like them here in Portland and Oregon. Blaine’s primary care doctor Scott Fields, who wanted to be here today but couldn’t, sending words anyway. And I have so much gratitude to Dr. Mark Merkens, who headed up the Myelomeningocele Clinic at CDRC at OHSU for much of Blaine’s life. I never quite got over the fact that he retired, it was always so wonderful to have his wise counsel and humanity.

I’m also so grateful to my relatively new but very dear friend Marilyn Sewell, who will give us some words about how we go forward when we are dealt such a horrific blow.

And my dear dear friend Joyce Brekke. My friend since September 1967, when we met the first day in the dorm in college. In the wikipedia entry for friend, I’m planning to put her photo there, because there is no one in the world better at friendship than Joyce. She’s perfect and Joyce, I am not going to allow you to shake your head and disagree with me. I am four months your elder, show some respect.

Our dear friends Stan and Nyla, whose business Dot donuts in Vancouver, has provided the donuts today. We thought it would be the perfect refreshment, because nobody appreciates donuts like the geeks at Free Geek. Whenever Ric and Blaine would bring donuts, the geeks would be drawn like moths to the flame.

Which brings me to biggest thanks of all I want to convey today. Geeks. Free Geeks. Free Geek. It is a place where so many of the overlooked, the outcast, the don’t-fit-ins, the want to make a difference even though there’s not much money in it people. etc. find a home. It became Blaine’s home away from home. We worried there might not be one. Our gratitude to the people and the organization knows no bounds. Free Geek is responsible for so much of the joy and love in Blaine’s life since 2003. Let me show you what they did on the day Blaine had been volunteering there for 10 years.

show video

We love you guys and hope you stay in our lives. Blaine went there every day he was able from June 2003. He built and helped others build more than 6,000 computers. People who otherwise would not have had computers. People with few resources. People without houses. People without teeth. People who are often made to feel unwelcome among us. Free Geek is still giving people like Blaine a home. And why we are asking those who are so moved to make a donation in Blaine’s honor in lieu of flowers.

Blaine was the perfect person for that job because he looked down on no one. Never had a bad word to say about anyone. Never had a bad thought about anyone. As I said before, as good as you think Blaine was, please multiply it by infinity. And keep doing that.

Which was such a blessing, but in an odd way, a curse. When you have the privilege of knowing and being around someone like Blaine every day, you know what love can do. It can do anything. So then when you look out at the world, at the hate, the rage, the killing, the disrespecting, the insulting, the greed and the grasping, the dark things that just keep happening and won’t let up, the world just makes no sense. When you see what the power of love coming from one single person can do, you just can’t get your head around why we are fighting and warring and killing and ruining each other and our only planet.

So can I just ask each of you, from this day forward, to just go out and take some of Blaine and his love and joy and help stop the insanity. We can’t go on this way. It has to end. If every one of us thinks kind and loving thoughts like Blaine, and treat one another that way, every moment, maybe, just maybe, it will go forward and the people you know will be touched and so on and so forth and it will grow and grow and there will be no stopping it. That’s how Blaine would have it.

And I think we owe it to him to make it so. Please promise me we will all try our very best to make a world Blaine would want, one that actually deserved him. If I know that, I can go in peace and start remaking a life, one with a gigantic hole, but one that Blaine would want me to have, Ric to have, all that knew and loved him to have.

thank you.