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.
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.
For 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.
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.