This year is going to go down in the history of my life as just one of those strange years. Like 1981, or 1988, or 2004 which all were life changing years.

The first six months was pretty much all health stuff. Trying to survive the transplant, then doing all the stuff I was supposed to do to monitor it. Nik was here, we were just on autopilot going from appointment to appointment, hospitalization to hospitalization. My dad died in there as well so there were some visits and stuff but it was mostly a blur. When Nik left, I did need to take a few weeks to learn how to take care of myself. I was cooking and cleaning and taking the dog out and the trash out for the first time in over a year or two. I had to build up an endurance for those things and then that got easier.

Then I’ve been hanging out here with nothing much to do but go to infusion every 28 days and the lab every 28 days in between those, a couple of appointments here and there. I still spend a lot of time exercising and trying to improve my stamina and strength. I still work on my guide dog. I still do a lot of admin work for the fam and some for the biz. I pay college fees, enroll Avery in school and talk to his advisors, make sure everyone has their vaccination appointments, etc. I still go over some clients with Nik and we exchange ideas about how to mitigate their challenges and advocate for some of their issues.

But mostly, I have loved the quiet. Like, LOVED it. I go entire days without wearing my hearing aids. I go entire days without dealing with anyone else’s shit except my own family, who I generally talk to daily at least for a bit. I feel like I haven’t sat with myself, with time to think and just be in the quiet in years. Decades. Mostly because I haven’t.

I have gone out with some friends and family here and I have thoroughly enjoyed that. If they come knocking, I haven’t told them no, but I haven’t really reached out either. For no real reason except: It’s nice and peaceful here! I have only rarely been bored or lonely. Most of the time, I’m completely satisfied sitting here with my dog, reading or listening to podcasts while I cook or do yoga or fold laundry. If I was going to stay here forever, I’d have to snap out of this at some point and go do something. But since I know this time is finite, I’ve sort of given myself permission to chill and enjoy it.

Lately I’ve gone down a Mormon rabbit hole. It started when my son Avery wanted to go to Crescent and visit the cemetery there and I was reminded of my Jehovah’s Witness grandparents but also my Mormon ancestors. My Great Great Great Grandfather was a pioneer Mormon named David Wilding, who traveled from England with Brigham Young in the 1830s to Nauvoo, the area where Joseph Smith was trying to settle but then was killed and the Mormon’s expelled. They traveled across Iowa in the winter and came to this Council Bluffs/ Omaha area where they camped in what they called Winter Quarters before in shifts, they traveled on to Salt Lake City. David Wilding also traveled on, but returned after a falling out with Brigham Young over who was the appropriate prophet to follow Joseph Smith. .Wilding and many others felt it should have been Smith’s son. Brigham Young thought it should have been Brigham Young. So David Wilding and many others who either came back or stayed in this area started wards of the Reorganized Latter Day Saints Church (Now called Community of Christ Church.) Crescent, Iowa’s only church was started by David Wilding and many others in that area. Many of which are my ancestors. My ancestors were apostates.

It’s interesting that Joseph Smith Wilding, David’s son and my Great Great Grandfather, is buried just a few meters away from my grandparents, who became devoted Jehovah’s Witnesses. The apostates and the devoted, both who let religion split up their families.

In David Wilding’s case, his older children traveled to Salt Lake City as older teens or adults and became prominent, respected members of the LDS church. David came back to Winter Quarters with the younger kids, of which Joseph Smith Wilding who was the first child born in the U.S. in Nauvoo, was one. Those kids became RLDS and the family was split.

The story goes with my father’s family, of which there was 7 children, that my grandfather struggled with alcoholism and my grandmother was struggling to feed all the children. She made a decision to give the younger children up to the Christian orphanage in town and keep the two oldest girls. When she was getting them ready to go, two JW missionaries came knocking on her door. And they saved her. The church helped her with food and needed items for the kids, and helped get her husband into the church and deal with his drinking. Eventually, he became an elder and minister of the Kingdom Hall in Council Bluffs. The JWs saved them, but also helped to sever the family as well later on.

It also is probably the number one thing that turned me atheist.

I am not atheist in that I know there is no God or higher power. I am a puny human, and like an amoeba has no concept of me, I’m sure there are all kinds of things in the universe that I have no concept of. I am an atheist of the God in the Bible, however. I love science and don’t really believe in the God of the gaps, although I am sure there are fundamentally amazing and unknowable things in the universe. Although I would love to live long enough to know more and more and more till all gaps are filled, I know I won’t. Nor will human kind. And I am OK with the not knowing. I don’t need to fill gaps with stories. The gaps are interesting enough on their own.

I believe my mom and dad believed in God in a sort of nondenominational way. When they first got married, my mom tried to take classes with the JWs. We had “The New World Translations of the Holy Scriptures” in our home with little tabs and notes in it where my mom had studied it. But since my dad wasn’t putting in any effort (He had had enough church, more than we ever had, he always said), my mom stopped making t he effort. My dad never officially left the JWs, he just kind of faded out. It was kind of don’t ask/ don’t tell. On Christmas, we didn’t put lights up or talk about celebrating, although we did. Once when my grandmother dropped by, my mom and dad talked to her in the driveway for a while and didn’t invite her in because our house was decorated on the inside for Christmas. We did not receive presents from them on birthdays or anything. So, it wasn’t like they didn’t know we weren’t JW, but it sort of went unspoken.

My mom started taking my sister and I to the First Congregational Church in Council Bluffs. (Now United Church of Christ.) I remember feeling fairly neutral about it. In Sunday school, we cut and pasted a lot of pictures of Jesus on pages of a book. The boy who sat across from me was always drawing the cars from Starsky and Hutch or Dukes of Hazard and never did anything. Nothing happened to him so I kind of half-assed it, too. I remember doing something where we made a golden ruler, a literal ruler covered in shiny gold stickers. It wasn’t until years later that I came to understand what the Golden Rule was. Most of church went right over my head. Mostly, I was mad because I was too young to do the stuff my sister got to do, like be in the choir or be in the Christmas nativity or in the big kids room. By the time I was old enough, we had stopped going.

My mom stopped because the minister had pissed her off by making her feel bad about our imperfect attendance. I think she felt some of the people there were snobby, too. My dad never went to church, and I did have a Sunday school teacher that constantly asked where my dad was. I did stay long enough to be a third grader that got my own Bible, though.

Meanwhile, in the JW world…the world was going to end. In October of 1975, to be exact, the Watchtower had predicted that the world would end. My parents talked about this, in mostly incredulous terms, about how one of my aunts was selling her house and getting ready for the end times. I never understood this. What does having a house matter, or cash, or a bank account in the end times? Still, the notion of the world possibly ending freaked me out at five years old. Even though my mom told me it wasn’t going to happen, even the notion of the possibility frightened me. I did not know much about keeping track of the months, then. But when 1976 rolled in and everyone started talking about the Bicentennial, I breathed a sigh of relief.

My grandmother had stepped up her efforts to save us, though. And she convinced my mother to let her pick us up from our babysitter’s house and spend the afternoon at her house. She gave my sister and I our own JW “Book of Bible Stories” and would read from this children’s bible. She told us we should read it at home, too. And so I did.

That book freaked me the fuck out. Holy shit. A mean snake lies to Eve so she gets punished forever by God. Then God likes her good son, who killed this cute little lamb for him, but not her bad son who gave up some wheat? Lot’s Wife Looks Back and turns into a pillar of salt as she simply looks in sadness on her burning home? God plays with Job like a cat plays with a mouse before deciding to let it go? Stephen is Stoned? Abraham has to kill his son? I can vividly remember the pictures, done in that same colorful style that you still see in Watchtower and Awake! Pamphlets that the JWs leave on your doorstep. I remember pictures of the people drowning in agony in Noah’s flood. I remember not quite getting why Jesus was nailed to the stake (JWs put him on a stake with his hands over his head, not a cross.) Every story was written in this tone where look what this asshole did, YOU wouldn’t do something like that so God will come after you and KILL you, right? But then Jesus, we suddenly feel sorry for. He was the one who was nice? Right? Why didn’t God save him? God, to me, seemed like kind of an asshole. Jesus was nice, but look what it did for him? God didn’t save him and he is his son. The whole concept of Jesus dying for our sins went right over my head.

On the last two pages, Jesus comes down on a white horse with an army of horses behind him. There is an ugly battle. On the next page, a beautiful but sort of stepford-y white, blond, blue-eyed boy and girl sit in a lovely garden along side a lamb, a peaceful lion, and a baby deer. It was beautiful. and it was creepy as hell. I couldn’t see any blind people in that world. My grandfather would come to tell me that if I had a proposed lens transplant that was up for discussion in an upcoming eye surgery would mark me with the devil’s mark. Then he gave me a dollar. Hmmmm. I ended up not having the lens implant for medical reasons. But now I have a kidney transplant so we’ll see how devilish I will end up. Between that and going to the Kingdom Hall to watch 16 year old family members vow to obey their new creepy JW husbands.* I was out. Religion is too weird. (*To be fair, I never really got to know said husbands. They were very young, too. This is just my preteen interpretation of weddings where women had to vow to obey their head of household.)

At church Sunday school, when some kids tried to explain to me that Jesus died for my sins, I was just confused. “What sins?” Not that I was a perfect kid. But my concept of sins was like murder or stealing, and I hadn’t done anything like that. And I also didn’t get why God making someone die 2000 years ago had anything to do with me. God was an asshole. It just seemed like more of his M.O.

In sixth grade, my friend Mardra got to sing on a local children’s religious TV show. I was very jealous. I didn’t give a rats ass that it was a religious show, I just wanted to sing on TV. She asked me if I knew any hymns. I knew Jesus Loves Me and Found a Peanut. That was it. Not good enough, said Mardra. You don’t know anything about Jesus or God. You don’t go to church. You can’t sing on the show.

Still, I was coming upon adolescence and was rethinking everything. I decided to investigate religion on my own. It was partly from Mardra telling me I didn’t know anything about religion and part from reading “Are you there, God? It’s me, Margaret.” That book was a mirror of my life. We had just moved like Margaret’s family. All my friends and I did was talk about boys, bras and who would get their period first. My parents were religiously a little screwy, and so we were nothing. And my dad even had a bad lawn chore accident like Margaret’s dad. It made sense that I would take on the same type of religious exploration that she did.

So I started reading the Bible. In my bathroom. In secret. My family would think this is very weird. I started at Genesis and maybe read 2-3 chapters a day. I couldn’t stay in the bathroom too long. I don’t think I got past psalms, like I never made it to the New Testament at that time (I eventually read the whole thing in later years.) But reading it made me think the whole thing was bananas. It told one story then told another that contradicted the first. It had all of these nutty rules that no one followed. It had sometimes some pretty language, but it still made God out to be kind of a narcissistic asshole. I started to see how, like the 80s pop song lyrics my friends and I could totally make mean anything we wanted them to mean, that is what people did with excerpts from the Bible. It wasn’t anything that I found in it that was helpful or that I could really hang on to or believe in with a good conscience.

I also started asking kids at school about their religious and church experiences. There were a lot of Catholics, some Mormons, and a mix of Protestant religions. I also started learning and paying more attention to world history in regards to religious wars. It seemed to me that religion did not make people any better, it made them meaner and less moral. Kids who I talked to would get into arguments about religious differences between Catholics and Lutherans which to me were so minute and stupid, split hair level stuff that it caused animosity for no reason. I vividly remember listening to two girls in high school get into a heated argument about whether it was okay to speak in tongues. Does God really care about this? Does he care if we dance around and sing “Hungry Like the Wolf” or dance around, arms over our heads and sing words I don’t understand? What is really the difference? Does he really care if the Millard North Mustangs win their football game? Maybe there is some kid with cancer who he might need to hear more about but you are jacking up the frequencies with prayers about Midwest United States varsity football.

Meanwhile, my family had reconnected with my dad’s sister who had left the JWs and become Catholic. They were completely excluded from all family events. In fact, I did not know I even had these cousins until I was around 12. They became the family on my dad’s side that we became closest to. But it was very hard seeing them, say, excluded from my grandmother’s funeral in very harsh ways. I became VERY anti religious.

I mellowed out about religion as an adult over the years. I dabbled in a church here or there. I took a Bible history class at the University of Kansas which I found really interesting. It did more to solidify my atheism, even though it was taught by a cool catholic nun. I learned so much about all the politics and dealings about how the Bible actually came to be the Bible. You can’t learn all that and really think it’s inspired or written by God. I give that nun credit though, for her scholarly honesty. I think that is when I finished reading the whole Bible. I thought Jesus’s teachings were somewhat aspirational and mostly a decent code to live by, along with a bunch of others. I taught a course on Islam in the UU church. I had to learn everything as I taught it and I was able to visit a mosque. Islam seemed about as useful as Christianity to me. Same patriarchy, different day. I remember thinking that Islam had a problem with scale and that no one did the math when they decided on the Hajj. (Or predicted population growth.) and now the Hajj is becoming a huge problem and very dangerous. It’s the same as my thoughts on Mormonism and polygamy. That math just does not work unless you kill off 80% of the men.

But religious people seemed to me to be just like everyone else. Some used their religion for good. To comfort themselves and others. To give themselves strength and community. To reach out and have inspiration to be their best selves. This doesn’t bother me. I am fine with religious people who use their religion for good.

Others, just like in the outside world, use their religion as justification to hate, oppress, and vilify others. They use it in violence and in selfish power. This completely grosses me out. and I think as a world civilization, we need to really look at boundaries on this type of religion and religious zealousness. I don’t think religions should get tax exempt status. I do think there should be a strict separation between church and state. I think religions should not be protected from laws like basic civil rights laws. But I also believe that people are free to believe and worship as they want, as long as it doesn’t curtail other’s rights.

On a personal level, I don’t mind religious people of the first variety. During my kidney transplant, many people said they would pray for me and I appreciate that. I understand where it comes from. But I do appreciate being asked first. Like most blind and disabled people, I’ve had strangers on the street pray for me to get my vision back and that gets irritating. It would be like someone coming up to you and praying for you to be less fat or less ugly. I’m fine the way I am, thanks. When people ask me to pray for them, I actually do. It might not be the type of prayer they were thinking of, but I do commit myself to thinking of them, saying a few words on their behalf, committing my intention to them and that all good things will come to them. Putting some positivity there in the universe.

When I worked for 2.5 years as a child life volunteer in pediatric oncology, I was surrounded by praying and prayer requests. And I did whatever made those families feel better because that was my job. And many of the patients sadly died. I started informally kind of taking data. Which kids died compared to which kids were surrounded by the most prayers and telephone trees of prayer and clergy visits , etc. You can probably guess that the results were random. The kids who died had the harder to treat kinds of cancer, mostly. Or had gotten very weak on chemo and had that kind of complication. I would never tell a family whose child has cancer how to pray or not about their child’s illness. I have no issues with praying for kids with cancer if asked. But personally, I found actual solace in the fact that it was random. The randomness gave me comfort. It seems so much better to me to think that we (the doctors, nurses, family, friends, everyone) tried our very best with what we know as puny humans to save this child and randomly, sometimes it doesn’t work out. It’s terribly sad. But not as sad as hundreds of people praying for a child to live and God decides to not intervene. God’s ways are not that mysterious. It’s just a gap in our science knowledge. We can work our hardest to narrow the gap. Bad things happen to good people. Sometimes there is just no good reason for it. That is less unsettling than an all knowing God being begged by grieving people to help and he doesn’t.

A friend of mine recently lost her husband very suddenly. It’s really sad and I feel very bad for her. But she is doing this thing where she is trying to figure out why God is punishing her by taking him away. I know it is just part of her grief processes and she just needs to go through it. But I just want to say, “Oh, honey. Nothing. You did nothing wrong. This isn’t about God taking him away. It just really, really sucks. You don’t deserve this. No one does.” I hate that religion does this to people. Her husband’s death was a sudden cardiac event and it’s just sucky and random. That, to me, is better than “ I tried to be a good person. I prayed and prayed to god and he took my husband anyway.”

I think this quote is credited to Christopher Reeve, but I’m unsure if that is correct. He apparently said, “If I do good, I feel good. If I do bad. I feel bad. That is my religion.” That pretty much sums me up. I can see cultural and literal value in studying scripture and religion. But it is certainly not worth the break up of a family or fighting a war over.

I have faced mortality and lost a lot of young people in my life. People ask me if I’m afraid of death. Maybe a little, I mean. Not even death, I’m afraid of leaving stuff undone for my kids or my husband and them grieving and things like that. But I’m ok not knowing what happens after you die. Probably nothing. You make some fertile soil and feed the earth and the cycle continues. But if there is something else, I guess I’ll find out. But I don’t need eternity. And I’m not going to live my life for it. I’m fine with trying my best to be in the now. That’s all we have.

My homeschooling “era” of my life came to a conclusion with a whimper…or maybe a bang, depending on how yo look at it.

It wasn’t until today that I really thought about it being over. My 14 year-old that went to public high school this year (first time in public school) texted me and reported that he “totally got a 100% on his first Algebra test, of course.” It seems there is no reason to worry that whatever I and others and he, himself has taught him the past 14 years would put him behind. He reports that a lot of what he is doing now is “So sixth grade.” Hopefully, he is exaggerating a bit and he will be challenged and learn a lot.

He basically taught himself his eighth grade year after my life was interrupted by guide dog school, transplant, and Omaha. When he was with us in Omaha and I was at my sickest, I know that not a lot got done. But after that, he had to work through the summer to finish what I set out for him to do in 8th. We met mostly weekly over FaceTime to go over everything. I was there mostly for accountability and check in. He taught himself. I knew he found that kind of unmotivating and he was excited to go to school and have teachers, which I understand. So I’m hoping he gets what he wants out of high school. Every year my kids got to choose how to do school upon the options that were realistic for all of us. (Naim would have loved going to a posh private school like Catlin Gable, but it was not in the budget.) This year, Avery went for public.

Homeschooling families are under a lot of scrutiny and people about flip their shit when it’s a blind/disabled parenting family. There is a tendency to want to brag on your kids when they do well and go SEE? SEE? But it’s never all just you, the mom, who is responsible for the outcome. It is a complex thing that mostly has to do with the student themselves. The work they put in, the genetics they chanced to have. The environment they grew up in, which a parent only partly controls. There are always other teachers, too. From formal ones, like the many my kids had at Village Home Education Resource Center, to casual interactions with family and friends, to even YouTube.

I also can’t say too much because now I have 2 adults and one getting close to adulthood. Their privacy is always a consideration. We, of course, had some challenges along the way. But I feel like it isn’t fair to get too much into those stories. I had a kid with pretty significant dyslexia, I had another with not anywhere near the hardest presentation of autism to deal with, and there were challenges there. But I feel like I really shouldn’t go into these stories in great detail publicly. Trust me when I say that there were long, frustrating hours of learning letter names and sounding out words and finding ways not to flip math problems around. Trust me when I say that I have spent many hours crouched on the floor under a table with a kid who could not deal with the sound of the room, or the anxiety of the social expectations, or the weight of the personal essay writing assignment. Tears were shed.

So, my homeschool mom job fizzled out without much fanfare, but it also went off with a bang I just realized. They are doing so well and they are such good kids!

Naim is an RA this year, as well as a food services shift manager and has managed, which several scholarships and part-time jobs to pay his own way through college with no student debt. He even has had enough money to invest in some CDs. This should be his last year unless he goes on to grad school. He will be 20 when he graduates. He is usually always on the deans list.

Aaron is starting college next week! I am so excited for her. She finished her AA degree at community college in June. She did not get the same amount of scholarships as Naim, but did get some. She has been working at parks maintenance in our city and has a job lined up in food services at the university. We will end up contributing probably around half the costs of her college, but she will still graduate in 2 or 3 years with hopefully no debt.

Avery seems to be enjoying high school and I guess we will wait and see about his grades yet, but he has always been an easy kid to teach.

I have been proud that despite the twins challenges, we were always able to keep them progressing academically. It was not always at the same pace as public school kids, but as I’ve always said, no adult is going to ask you whether you learned to read at 6 or 12. It doesn’t matter as long as there is growth. All 3 of my kids (OK-1 bombed, 2 did mediocre) bombed their first standardized homeschool test. And then they increased theirs scores exponentially on the subsequent tests over the years as it all evened out. I honestly believe that 1:1 individualization basically erases a lot of “special needs.” Special needs reflect more about the needs of a school system then actual students. IDEA was designed to mitigate the failures of the K12 system. It is a very flawed solution to problem most people don’t even admit exists.

But when I really think about the best thing about homeschooling, it is that intangible closeness that it brings to a family. It is a lifestyle that affects the whole family. The time I got to spend with my kids from birth to age 14-15 is something I would not trade and was so lucky to have. It established a foundation that I still feel to this day. It was always a balance between trying to hit the right note between having too much parental hovering and togetherness and too much child freedom. People think homeschoolers are helicopter parented, but the 1 element I got questioned on the most is how much freedom they had to choose for themselves, get themselves places, make friends themselves, and have their own ideas. I’m not saying we always did it perfectly, but I think they became kind, independent, savvy, social young people. I like being friends with them.

The second best thing about homeschooling was keeping the love of learning alive in the kids and the fun I had relearning or getting a chance to learn anew stuff that I missed out on. I found that I am a really pretty good math teacher. And I STRUGGLED with math growing up because of all my vision and hearing issues. Shout out to Steve Demme from Math U See who was our math guide for all three kids. His curriculum was entirely with the use of manipulative and he taught the manipulative in videos. A lot of his teachers guides and answer sheets were available in digital format so I was able to reverse engineer some of the answers i didn’t understand. The first time I watched a sample lesson of his, it was on Algebraic Binomials, I think. And I almost cried. Three dimensional tactile math. I finally understood the what and why of Algebra. Math was never math, it was always “let’s go watch Steve” and get the blocks out. My kids KNOW math. And even though sometimes I was only one step ahead of them, and sometimes one step behind, I was able to gain a ton of confidence in my own math abilities. I’m not bad at it. And I CAN teach it.

One other Curricula I thoroughly enjoyed was “Story of the World” by Susan Weis Bauer. Its history told over 4 years, beginning to end in chronological order. Of course it’s not everything. Nothing can be. But after skipping around from unit to unit in fragmented pieces for my own education, doing four solid years of history in order was absolutely enlightening. I finally saw how all the pieces fit together on a timeline and the kids were able to pick up so many patterns in regards to issues like violence and causes of war, dictators, colonizers, etc. I don’t think you see those things as much with isolated units. I also loved reading all the books we read, all of the artwork we learned about, all the science we explored. Everyday was exciting to learn something new.

And we had so much fun! When I look back to all the travels and field trips and classes and science experiments and books read and ideas planted, I get teary-eyed. And in these last few months that I have been apart from them, they generally still always pick up the phone when I call, answer the text, call and text me, and we are still close. I am forever grateful that despite my mish mash of part-time employment I always pulled together over the years, there was always time available for family and kids. It was never rushed or sparse. It built such a tapestry of experiences and a foundation of family relationships.

I’m sure that growing up as they have, they have had a few awkward moments with their peers, but generally the friends they have are nice kids who I trust and enjoy. They always had to learn to walk into a classroom and make friends. They had probably a lot more opportunities to socialize than I ever did as a kid.

I did not advance in my career as I possibly could have if I had not homeschooled them. But as I mentioned in other stories on this blog, much of my situation was issues with childcare and transportation and K12 accessibility, which made homeschooling the way that I was able to parent in a way that fulfilled my kids needs as a disabled parent in the current world. When I chose to have kids, I chose that route to put my kids first, whether I homeschooled or not.

I totally understand some of the criticisms of homeschooling. I get that it is not economically viable for some families. I get that it is not what some parents want to spend their time on. I also get the criticisms that come from some families who do not teach real science and indoctrinate their kids into religion, or even use homeschooling to hide abuse. All of those are very serious. On a personal level, I never had to worry about whether I was going to teach my kids flat earth creationism or traditional gender roles or cult like religious lessons or lock them in the attic and abuse them of course. But I care about other children enough to know that outside accountability needs to happen. I have always been ok with having additional sensible checks and balances for homeschool kids. Sensible to me is stuff like semester/quarterly visits, a plan or goals for the year, a portfolio or other type of assessment on a regular basis, a basic guideline for what needs to be taught (reading, math, science concepts on a criterion referenced basis. Not a prescriptive curriculum or what needs to be done every day or logging every single hour spend on school. In homeschool families, it’s ALL school except sleep.)

But I also think so much of the good from homeschool could be brought to public school. I think if class sizes were 1:5 (perhaps a room of 10 kids with 2 adults) and were multiage, many of our ills would be reduced or eliminated. Most “soft” disabilities would be easily mitigated, kids would ALL have a true individualized education. So much more could be done with a teacher who stayed with an age range (1-3 grade, say) for the whole three years. Families who struggle, too could get more individualized help. Instead of traditional classrooms, school buildings could be more like community centers that have facilities like gyms and science labs, but would be more places to gather as a home base while students used the world as their classroom.

People say there is not enough money for that. I don’t think they understand the bulge that the issues of our current school systems face and have to pay for. There are layers upon layers of staff that do not work in classrooms directly with students. There are layers of specialists who spend some time with students but most of their time in meetings and on paperwork. Two of my kids would have/did qualify for IEP services. Both would have been at risk for failing classes, not learning to read, being tracked low, underachieving, maybe even being bullied. Nothing extra was needed for my kids except some patience, a little research, and meeting them individually where they were and stretching that a bit each day. There are cooks and janitors who could be reduced if students took over their own cooking and cleaning like in the home. (Or in Japanese and Finish schools). School would be more like an extension of family life and self directed learning. The teachers become facilitators of opportunities to learn. Not lecturers and classroom managers.

Even if this did cost more, so what? This is the kind of stuff that “Defund Police” is about. People misunderstand that term. It is not about just emptying the funds of law enforcement, it is about putting funds toward issues before they turn into criminalist problems. Does tax money need to go toward a small town buying armored vehicles and tanks for police? Or could it be used to pay for the salary of additional teachers and teachers aids and community resources for families?

Education is not rocket science. Sure there are some tips you will learn in college, but nothing I learned in college was that big of deal that made me a better teacher. And we have the internet now, so all that info is available to anyone who wants it. You learn systems in college, classroom management systems, curriculum record keeping systems, IEP reporting systems, a bit of statistics and assessment. You don’t really learn anything magical about sitting down with a kid and guiding him to learn.

I taught the little kids who were at my babysitter’s house when I was 7 or 8. I taught other people’s kids long before I had a degree. I was really always successful. This was because I only had a few students at a time, I had the opportunity to get to know them and try different things until something worked, and I could individualize everything and meet them right where they are. I would not have always been successful in a classroom of 35 people. I just wouldn’t have had the time or energy. I’m not special now and I wasn’t then. I do understand that some people can’t logistically homeschool. I understand that some people just don’t want to spend their time that way. That’s fine. But everyone who cares about kids and can be a bit patient can support someone to learn. Even if it’s just helping with something after school or spending time with kids, anyone can help a kid learn.

So, is this the end of my homeschool era? We will see…I’m in a decision making period right now after my transplant and as I get ready to return home later this year. Maybe I will work with the adults in our business more than I have in the past. We are looking at starting an entrepreneur group, like an incubator for disabled-owned small businesses. Maybe I homeschool other people’s kids who can’t. Like have a few in my home. Maybe I write and educate people that way. Maybe I do whatever CEUs I need to recertify myself as a K12 teacher. Maybe I become an O&M instructor and we expand into that area. I know I can’t really put homeschooling on my resume, it wouldn’t impress anyone. But I also know that it was not the lag in my career that people assume. I continued on and did a lot of what I always set out to do: Supporting people to be the best of who they are.

Back to my Homework Series as I think of signing up for another writing class. This assignment was to write a story that happened in one scene in the space of about an hour. So this is my chaotic, shameful story of that time at the airport in Amsterdam when it was me. The bitch was me.

When I first set foot in the Amsterdam airport after a ten-hour flight, all I could think about was a bathroom. My husband and I, as blind people traveling with white canes this trip, had arranged to have assistance getting through to our next flight to Stockholm and only had about 2 hours to do it, as well as get through the customs line, so I was hoping that our help would be there and be useful. 

But it was a no go. Our airport help came with a cart with one bench that he demanded we get on, but we had our 3 children with us, and we couldn’t all fit on the cart. Of course disabled people are not allowed to have children to deal with. We really just needed someone to walk along with us, but the cart was there and we were absolutely going to have to get on it and trust our children to run alongside or forgo this help. Our helper did not understand English at all. He was not native Dutch, he seemed to possibly originate from a possibly African nation. I don’t usually want to be the Ugly American who expects everyone to speak English for me and am usually fine finding a way to communicate with others who don’t share a language. But we were just getting nowhere here. He would not walk with us; he would not let my kids on the cart. He only wanted us to hand over our tickets to him, which I didn’t want to do. I only show these helpers my ticket, I don’t ever give it to them because, I learned, they have a tendency to walk off with it. I was not going to be separated from my kids in a very busy airport where none of us knew the language. Time and my bladder were throbbing on, we decided to go solo.

First mission: bathroom. My kids could read a bit, and so we IDed the bathroom signs and followed those. I was in one of those majorly distracted, overtired, overstimulated modes where all of my senses and internal compass and patience were failing me. I walked down what appeared to be a small side hall, the kind that might house public washrooms. I saw a lighted area, which usually means there is a door or an opening or a turn to make. I thought I would be going to the kind of public bathroom I was used to, where you walk into a door and then there are sinks and toilet stalls. But when I made the turn, all of the sudden the whole atmosphere changed and there was a peaceful silence and sense of being alone. I turned back where I had come from, and a sliding door opened a bit, then shut. Was I…in the bathroom? I felt around. Tile walls. My knees hit hard porcelain. A toilet seat. Oh! I was in. I am not going to look a gift horse in the mouth. I did my thing.

When I got out, I heard sort of a loud mumble of anger or hostility. My husband was waiting. “Let’s go,” he says. “Before the mob comes for you.” Apparently, I did it wrong. Apparently, there was a whole line of people on the opposite wall of the hallway, waiting for these individual sliding doors to open so the next person in line could go in. In my frenzy, I had passed all of them and just gone into the first sliding door that opened before me. I’d pissed them all off. Ugly American, strike two.

My husband had done some social engineering already and found someone who was walking to the customs line, so after we collected everyone, we walked along with him to the line. Or I should say, lines. There were 4 lines, each for a different group of people, we figured out after a while of standing in whichever random line we found ourselves in. Some were for EU passports, some were for outside of EU passports, some were for other domestic flights. We were a bit of a challenge because we had both an EU passport and American passports. We decided to try to find the outside of EU line, because we had more of those,and it would likely be easier to accommodate my husband’s EU passport in that line than the other way around. But as we were asking the people around us which line was which, all of the sudden our whole line shifted to one side. A customs agent was yelling words I could not understand. My husband, who can speak Swedish, English, and a bit of Danish and Dutch, motioned to get his attention. The man then pulled him out and was taking him away. I physically held on to his arm and said in English that we were 5 and could not be separated. We would never find each other afterwards. Our cell phones did not work in Amsterdam. He then just wanted Nik and I to be pulled out. I figured it was because we were blind. As blind people we get pulled out of every single airport and customs security line we ever go through without exception for extra security checks. But it is usually when we get right up there, not so far back in line. Again, I said our children had to come with us. I’m saying this in English to the air. I am not sure who is listening or understanding me at this point. It was somewhat for the benefit for my husband and kids to know that this is the hill we die on. We are not getting separated. As I am talking, we are being pushed and shoved around. I grab my youngest kid and I tell all of my kids to stay close. They are crabby, but I demand it in my mean mom voice. At this point, everyone hates us. But we link and become one massive blob of people, which is not looked upon favorably by anyone trying to maneuver around us.

The customs agent takes us outside of all the lines. Someone steps on my husband’s white cane and it cracks, leaving him a cane of about 2 feet in length. Almost worthless for navigation now. I take the lead with my cane. Even though the customs agent is pulling him by his elbow, I know the vulnerability of not having any type of cane between you and walls, signs, poles, whatever might punch you in the face or trip you. Sighted guides really can’t be trusted with that sort of thing, especially one who has his own agenda. So, I give the agent my arm to grab. Its unpleasant to say the least. 

He puts us in the front of the customs line. We are next to see the agent at the counter who will stamp our passports. We did not ask for this, and the man behind us is unhappy. He yells in broken English that he will miss his flight. I tell him to please go ahead of us. He doesn’t move. He yells. I gesture to him with my arm, please, please go ahead of us. Its fine. He doesn’t move. The counter is free, and we are up, I give up on the man and move ahead. One of my kids breaks from the pack. She is a rule follower and is horrified that we have been put up front and that this man is so mad at us. I am getting all this as a blow by blow from my other kid. She stays behind the angry man. We are all up at the counter. One by one, the agent examines us and stamps our passports. I tell my daughter to come up here, its fine. We just have to do what these agents say. She is frozen and doesn’t move. The man is yelling at us to hurry up. My husband is disoriented due to his cane and the loudness. I am more used to not hearing than he is. I am better at taking tactile and muffled cues. So, he has become temporarily worthless at this moment. I turn around and do my nastiest hiss at my daughter. “GET. UP. HERE. NOW.” Through gritted teeth. I feel my youngest child flinch. “That man just called you a F(*&^ing Blind American C*&#!” my child whispers in my ear. Strike 3 for the ugly American.

My reluctant, somewhat autistic newly transgender daughter, practically in tears and caving in on herself due to the loud bright unpleasantness, slowly comes up to the counter. She wears a hat, face mask, and heavy coat covering almost her entire head and face. The agent asks her to take off each layer so she can be compared to her passport photo (where she appears as her former male identity) and she slowly complies. The agent—bless her—is polite and lets us through. 

On the other side of the customs milieu, we breathe a bit easier. We still don’t know where our next gate is, but Nik has recovered his bearings and I find an old folding cane in my backpack that I offer him. He social engineers us a walk to our next gate, and we have 30 minutes to spare. We sit in the hot airport and melt into an exhausted recovery. I want to give Amsterdam another try one day. A real visit, where I can show her people my nicer sides.

Today is the 20 year anniversary of my mother, Diane’s, death from a brain tumor at the age of 55. Sometimes it feels like she was never here. Except for myself, my sister, and my mother’s siblings, sometimes it feels like no one else ever knew she was alive. Except for her obituary, there is almost no evidence of her on the internet. She doesn’t even have a gravestone marker. Her ashes were spread in a beautiful, but somewhat inaccessible place–the Maroon Bells of Colorado. She never met my children. They only vaguely understand who she was, despite my attempts to share stories about her. She only met my husband (who was not my husband at the time) briefly in a sort of tension filled 5-minute meeting. At times here and there, it feels like she is a figment of my imagination, only shared with my sister.

But then I always remember the words of Eva Schloss, who was a holocaust survivor that lost her father and brother in the concentration camps. She talks about the words of her father that she always remembered and tried to always carry on: 

“I promise you this. Everything you do leaves something behind; nothing gets lost. All the good you have accomplished will continue in the lives of the people you have touched. It will make a difference to someone, somewhere, sometime, and your achievements will be carried on. Everything is connected like a chain that cannot be broken.”

Erich Geiringer

And then I look around, and I see her everywhere. She is inside my head. She is in the very walls of my house. She is in my children. And despite his 81-year-old somewhat impaired mind, she is still in my dad. The chain links are connected in numerous ways. My mother was a very private woman, which has made it hard to write about her without a lot of guilt. But I also feel like I could do more to sew a tapestry of who she was, each thread may add a little link in the chains I pass down to my children. 

To understand my mother, you must appreciate where she came from. She grew up in Council Bluffs, Iowa in hard circumstances, surrounded by alcoholism, domestic violence, and poverty. As the oldest child, she often felt a responsibility to take care of her younger 3 sisters and one brother. She tried to fill in gaps that her parents were unable to fill. Sometimes, when her younger sister had trouble in school, she would be called in by the principle to intervene because her parents were not available. Sometimes, when there wasn’t food in the house, she would go out to buy it with money she earned from part-time work. Sometimes, she had to intervene with social welfare offices to make sure the food stamps did not get cut off. She was always honest about her past with us. She never cherry-coated it. I would visit some of my relatives and see some of the alcoholism and dysfunction myself at times. Because she was honest with us, it helped me to realize from an early age that it was dysfunction and not how life should be. I knew early on some of the warning signs of men who were verbally and physically abusive to women, people who drank too much and how that impacted their lives, and also how blatant and abnormal racism and sexism was. By being honest with us about how it was, we had a way to interpret it and understand how it could be. It helped my sister and I to be able to set a higher standard for ourselves and to not get trapped in some of the situations we saw some family members in.

When she graduated high school, my mom tried to get out. She moved to California to live with her aunt and uncle. The plan was that she could live there and go to college for free. But alcoholism struck again. Her aunt was very ill from alcoholism and on the brink of divorce. Although I think they had the best intentions, they felt that they could not support my mother and she was sent back home. But there was no home to come back to. After graduation, my grandmother had put all of her things out in the driveway. She was not welcome home. And her dream of college was gone.

She got a job at the phone company and rented an apartment. There is where she met my father. They had met briefly before, when my mom was 13 and dated a guy in my father’s class. My dad was 6 years her senior, but had been held back twice, so didn’t graduate until he was 20. My dad was an attractive guy, though. My mom would dress up and put on make up just to take the trash out, because she would have to walk by his apartment then. Eventually, they started dating. She soon became pregnant with my sister and they married. He was 25, she was 19. 

What Diane had come to learn at a young age, is that hard work could get her far. My father worked for the Union Pacific Railroad as a carman. My mother tried to find better work and applied for a job as a mailclerk at Mutual of Omaha. In a story printed a few years later in an insurance industry magazine on my mother’s “Horatio Alger story,” the man that hired her said when he asked her why she should hire her, a woman with children in the 1970, she famously said “because I am a hard worker.” He gave her the job. Diane had an almost infallible work ethic. She knew that if you show up, work hard, and do your best it can mitigate some of the effects of things like being a woman, being poor, and having only a high school education. 

Some of my earliest memories of my mother were our morning routine. We got up at 6:30am, we got dressed and brushed our teeth. My dad, my sister and I would pile in our car, pull out of the garage and wait in the driveway. A few minutes later, my mother would come out in her fancy work clothes. She always wore heals, nylons, a skirt and a blouse, often a suit jacket, her nails were perfectly polished, and her dark hair done in a flip like Marlo Thomas on That Girl. She was young, probably only 25 or 26 then, and one of the few professional women we knew at that time. My dad would drop us off at our babysitter, Jo’s house, take her to work in Omaha across the river and then take himself to his job. It was just what we did. My sister and I went to school, they went to work. There was no drama about it ever. You were always supposed to be ready on time, be ready to work, be pleasant about it, and work your hardest. 

My mother rose through the ranks at Mutual, and at some point, I remember a kind of breakthrough promotion. I believe she had become assistant vice president in this Mutual of Omaha subsidiary called “Mutual of Omaha Fund Management Company.” We would sometimes go with her to work on a Saturday, and she would set us up with typewriters to play with or papers to copy. One Saturday, our job was to help move her from the main floor, a sea of desks, into a small office. She showed us her new name plate that slide into its holder on the outside of the office door. She now had a little pen set that went on her desk. Two fancy gold pens that perched at an angle in their holders. She had these gold fringed miniature flags, too. One a flag of the United States, and one a white flag with the Mutual logo on it sat in a wood and brass flag holder on her desk. It all seemed very fancy to me, and I started to get that my mom was becoming an important person at work. She would eventually rise to Vice President of Operations, or maybe it was Chief Operating Officer, and her offices would get bigger and fancier as her pay climbed as well.

My father traveled a lot for the railroad for several years as a steel inspector. He would go to places like Youngstown, Ohio or Buffalo, New York or Pueblo, Colorado and inspect steel mills that the UP bought products from. Usually, he would be gone during the week, and we would pick him up at the airport on the weekends. Sometimes, he might be gone for several weeks in a row. I did not realize at first that other kids didn’t go to the airport twice a week like I did. So my mother had to manage a lot while we were little. She never made a big deal about it. But my sister and I always slept in her room with her when he was gone. At first, we would all sleep in her queen-sized bed. I was always in the middle. But as we got bigger, we traded off. One would sleep in the bed with her and the other would sleep in a sleeping bag on the floor. This went on for years, until the UP ended the inspection jobs and my dad was back to working at the railroad shops. 

My mother almost always made more money than my father. At the end, it was something like 3 or 4 times as much. My father worked at the railroad for 40 years. He showed up every day, even though I know he was not really very inspired to work there. But often, his salary was what paid the day to day bills, plus his job provided our family with health insurance. Her money was used for vacations and bigger purchases. They made it work, and I don’t ever remember my father having any insecurities about this, nor do I remember my mother holding it over his head. They rarely fought, and I rarely had any feelings that the family was unstable or that they would divorce. Even when the UP closed the Omaha shops and my dad had to either quit or transfer far away, they stayed together. Knowing that it would be hard for my dad to find another job, they lived apart for 6 years, him in Pocatello, Idaho and her back in Omaha. They visited back and forth frequently, and the marriage endured.

I know that my mother’s goals for her family were largely to give us the stability she did not have. Financially, with their marriage, and otherwise, it was always extremely stable and secure. My parents rarely drank. They budgeted and planned carefully, They did not have significant money troubles and lived within their means; they did not fight much nor was there any violence in our house. I don’t think this necessarily came easily for her. She had really no role models and was never taught how to raise kids, manage money, keep out of trouble, etc. She always regretted that she did not get to go to college, and she always valued education. Not only formal education but being self-taught. She was skilled at finding mentors to guide her, and would also go to the library and read books on things she wanted to learn more about. Our house was filled with books about leadership, dressing for success, and managing money. Although she eventually made a very good salary, I do think the early years were lean and she also acquired some amount of debt that she paid off on behalf of my dad when they were first married. 

Her marriage with my father was something I didn’t think too hard about as a child, but have come to understand much better as I have become an adult. Weirdly, I got more insight after she was gone and I saw my dad without her. I’m not sure I can explain this right, but this is what I have come to see. 

From the time I was 11 or 12, I started to realize that my dad was not quite like any of the other dads, but I really couldn’t articulate why. I have come to believe that my father has some undiagnosed, relatively minor learning and emotional disabiiities. This is part-armchair, I admit. But partly because I am trained in special education assessment and the signs are really obvious to me now, even though as a kid I could not name what the deal was. My father came from a difficult background as well, and has always had a level of aphasia and learning disabilities, probably dyslexia. He is also a bit emotionally immature and unaware. I think this has to do with his own child hood trauma. 

He is a good guy, my dad. He is hard working, too. He is very much WYSIWYG. He is not manipulative in any way. He is fun and means no harm. But he seems to have always required a relatively minor amount of actual life skills support from others to be his best self. For example, if he were to try to get a job in today’s job market, I think he would need a lot of help with the application process, filling out forms, maybe even some interview practice. Without help, I think he would struggle with the application process. But once he is set up in a job and knows what to do, he is fine. He will show up every day and do the job. But the job would need to be pretty straight forward. He was not stupid, he just had trouble with anything involving reading, spelling, procedural stuff, etc. And he is not unkind, but he needs to be told straight out what is going on around him and what other people might need. So, like, how to act in social situations and things like that. 

You can see where they may have started out as two young poor kids from troubled families who didn’t know anything. But as my mother learned more and became more successful and became more sophisticated, he largely did not. I know she would get frustrated to take him to business parties and she would heavily prep him before hand and help him along at the event. You could easily see how they could have grown apart, but they didn’t really. She always provided just enough support to him so that he could be his best self. And he was always the steady workhorse that she could depend on. When no other dads were cooking, cleaning and doing laundry, My dad was. My dad would fix our hair and get us dressed when we were young. She expected it of him and he rose to her expectations. My dad was always fun and a bit adventurous. I think he brought that to her because she could be a little intense and even boring. She often would say how easy-going he was. How he was always positive and could see how “the cream always floats to the top.” They enjoyed going on vacations together. But my mom wanted to sit somewhere pretty and relax on vacation, and he wanted to go, go, go. So they managed to trade off every couple of years and balance it out. 

From the time she got the diagnosis of glioblastoma multiforme to the time she died was only about 10 months. In that time, she had life altering brain surgeries, radiation treatments and chemotherapy. Her functioning, including her cognitive functioning, changed rapidly in this time. Still, it was my father who was probably the tenderest with her, always there to support her, when sometimes my sister and I were at a loss with all the impending doom to come. In turn, she spent her time trying to set things up for the family she was leaving behind. 

One thing she did, literally a day before brain surgery, was to set up a trust for my father. I do not know all the ins and outs of it, but I know her goal was that he not be taken advantage of by a woman (or anyone) attracted to a fairly young and good looking and relatively well off widower. She knew that he would need some help managing everything. And she also knew that he is so conflict adverse and sometimes oblivious that he might not see or be aware that he is being taken advantage of. She did not want him to be alone the rest of his life. None of us did. But she also knew that he didn’t have perhaps the skills or ability to discern who was really a sincere person. Her idea was that if she made all kinds of stipulations in the trust, that the woman who only wanted a meal ticket would be dissuaded. She thought that it would help to self-select only the women who could take care of themselves and had their own independent lives would come around. And then, he would have money to not only spend to enjoy his retirement with a companion on fun things like vacations and restaurants, but that he would also be ok if he needed long term care. He understood this and wanted this as well, and so in that way, Diane is still trying to watch out for him and make sure he is taken care of. 

One of her last business efforts was to buy me a house. She put an offer on a house the day before she died, for me and for my father to live in when he came to visit me. She wanted to make sure I had a steady, safe place to live as a person who is deafblind with kidney disease. Since she died the next day, I did not get that house. But my father honored her wishes and he bought the house I currently live in. Make no mistake, my father never would have bought a house and let me live in it for just the cost of expenses if it hadn’t have been her plan all along. A few years ago, he turned over the ownership of this house to me. 

I have often complained about this house and its upkeep. But truly, I always have known that this is the house that Diane built. It was her years of hard work and good money management that even made it possible for it to be bought, mortgage-free. It was her desire to leave something behind for me so that I might have stability that allowed it to happen. This house has allowed me to have and raise my children in comfort. To start a business, to even have a steady place for my husband to land so that immigration was happy. To live through short-term unemployment, long-term disability, and an unpredictable future. I know that I am privileged to have this house. And quite often, I look around at the safety of the walls, still strong even when my kids colored on them, and have a physical representation of her love for me and in turn the grandchildren she never got to meet. This house has been the foundation of my family, and without it, I would not have been able to offer them the stability and safety that my mother gave to us. 

My mother wasn’t perfect, of course. I have written here and elsewhere about some of the issues I had growing up as a blind person and how hard it sometimes was to live with an uncompromisingly tough mother. But I write to help other parents of disabled children avoid some of those pitfalls. I have long since gotten over any anger that I had from those experiences. I even value them in many ways, because now that I have a child who is trans and on the autism spectrum, I use my mother’s mistakes as my own strengths. I don’t know that I have always known what to do with my daughter, she challenges me at times. It’s is probably not unlike the experiences my mother had raising a daughter who was losing her vision and hearing–and she didn’t even have the internet. But because of my own experiences with my mother, I resolved early on that no matter what—my home would be a safe place for my children. It’s a place where they can be themselves and feel safe to explore who they are. I still talk about the values my mom taught me, like hard work, education, and how to fit in to society’s expectations of you. How you should dress and act. But I also try to see more of the uniqueness they have to give and try to help them figure out the best ways to express it. I could have only known to be conscious of this by experiencing some of the harder aspects of the relationship with my mother.

As we now know, family trauma can be trans generational. I know some of my mother’s trauma was passed down to my generation. And maybe even to my kids (probably in addition to disability trauma). With my mother’s upbringing (and make no mistake, her mother had her own generational trauma) she could have been an absolute horror as a parent. But everything she did and who she was, was about giving us a better life than she had. To moving us forward as a family and improving the opportunities for us. In a single generation, she managed to erase poverty, abuse and violence, alcoholism, and chaos from our family. She was a tough, hard working women with high standards and very little tolerance for drama. But she also tried to be very fair and kind. I have lots of flashes of memories of her being so happy to see me and of her being so excited about a new opportunity I was about to take on. It wasn’t all hard-as-nails, there were many fun and compassionate moments, too. But my mom was a tough mother, you can’t get around that. And I think that was her way of shaking off her past and giving us the opportunity to live a better life than she did growing up.

My job is to take it to the next step. This is also why I have tried to look honestly at some of her mistakes and see where I can make improvements. How can I take the best of the gifts I was given from her and take them to the next step and make them better. My kids know all the links in the chain I brought forth from my mother. I expect them to show up, be presentable, work hard and value education. I can hear her speak to my kids in my head sometimes. Sometimes I channel her for them and tell them what she is saying. Sometimes I soften it. Sometimes I try harder to look at them for who they are and acknowledge how hard they are trying even if it’s not quite up to snuff. Sometimes I try to find more creative solutions for our conflicts than she might have. But this is just my way of continuing the links in the chain. I don’t know if I’m managing to do this raising a family thing, balancing work and home thing, and being a woman thing any better than she did. The times are different, my situation as a disabled person is so much different. It sometimes feels like apples and oranges and very hard to compare. But I know that she would expect me to carry forward what she did and improve on it. She would have higher expectations for me, and so that is what I have tried to live up to. 

I asked her once, just a few days before she died, what she wanted me to tell my future children about her. She said that was up to me. I don’t know if I’ve done enough to tell them about her. They only have a vague notion that I had a mother whose name was Diane, and they have this idea that she was tough. But I don’t think they realize how much of her is in them. And how much of her has been a part of their growing up. She is ever present in this house that she built for my family. They know her values, they live them. And they know that in some of the ways we have been privileged as a family, it is directly because of her and what legacy she has left us.

Everything that she did is still here. Every accomplishment she earned, we still benefit from. The chain cannot be broken.

Assignment number 4 was to write about a newsworthy event (could be local, national, or international) and show how it affected you personally. The assignment also involved interviews and research. I did “interview” Nik for this one, and he concurred that my memories were basically the same as his. This is a skimmed down version of our “meet and get married” story. It was actually a lot more complicated that this but I had a word limit. I don’t totally know that I believe that if 9/11 hadn’t happened, we might have never spoke again. But I guess it’s possible. Still, I do think it is true that 9/11 was an event that put our little shenanigans into perspective. Having our friend, Grant, around as a buffer probably also helped. In the end, I guess it worked out how it was going to work out. Nik is still my best friend and life partner.

Everyone has a 9/11 story, and mine is not that interesting on its surface. But on a personal level, it did change the direction of my life.

I was pushing the snooze button on my 6:15 alarm, procrastinating getting up to go to work and had thus fallen into a much deeper sleep than I had even been in before the alarm vibrator had started shaking my bed awake. I did not hear the phone ring, but I did start to become aware of someone yelling into my answering machine. It was my friend, Dwight, and I knew by the tone and shouty-ness of his usual quiet voice that something was wrong. I thought something was wrong with him. He was a quadriplegic and I was his occasional back-up personal care attendant. As I slowly sat up, wondering if I could get away with taking the light rail several stops in the opposite direction of my work before 9:00am, I started to make out the words “Fire!” and “Washington!” and “Airplane!” What?

I lived in Washington County. And for some reason, I thought there was maybe a plane crash in Washington County that was causing a fire. Though that would be big news, Dwight wouldn’t call me so frantically unless it personally affected either me or him. I rushed outside, thinking that if I could feel the heat or see the flames, I would know if I had to run.

Nothing. Nothing was going on outside. In fact, it was quite peaceful and nice out. 

As I walked back in, the phone rang again. I picked it up thinking it would be Dwight again. It was Nik, my husband. But this was several years before he was my husband. I was surprised to hear from him as we had left each other months earlier with no real plans to talk again. 

“Grant wants an American perspective about all this. What are you hearing?” He asked.

Grant and Nik were roommates in Toronto, Ontario. I didn’t know what he was talking about, but it was slowly dawning on me that something big was happening outside of Washington County, Oregon. After Nik told me to turn on my television, he and I watched together as both towers fell on live TV. It was interesting to compare the coverage I was getting on CNN to what they were hearing while flipping through the CBC and BBC and even Al Jazeera. Comparing coverage between several different international news sources about the same event over the next week or so was an eye-opener to me. So much for getting an American’s perspective, they had access to a lot more information than I did.

September 11^th, 2001 was so huge and traumatic, for North Americans especially, that it broke what had been a bit of a stalemate between Nik and I. We had a weird relationship thus far, that was mostly failed due not really too much because of us personally, but because of international invisible lines separating countries. As disabled people, we had failed twice to immigrate either way in our efforts to be on the same side of these lines. 

We met 8 years before 9/11, in 1993 at a New York guide dog school. He barely spoke English as he was an international student from Sweden. We instantly hit it off. Within an hour of meeting him, I told myself “I’m going to marry him.” We spent 26 days almost entirely together while training our dogs. He was a student at York University, I had one more semester to finish up at the University of Nebraska. We wanted to be together. It made the most sense for me to go home, finish my semester and then try to get a job in Toronto. But in our early 20s, we were overwhelmed by the prospect. And when I started the motions to see if I could get a work visa for Canada, I was turned down due to disability. Nik and I were realists. We decided to go our separate ways.

In the 8 years since, I had gotten a graduate degree, moved to Portland, Oregon and started an information clearinghouse for disabled students at a university. One day, I got a call from a Canadian teacher looking for tech training for a blind student. “I don’t really cover Canada,” I said. “But let me do a little looking around.” 

That was where I found SCORE, A Wayne Gretzky sponsored program for blind students that stood for Summer Computer Opportunities in Recreation and Education. And look who I found working at SCORE as a camp counselor? It was my old summer boyfriend, Nik. Should I email him? It had been 8 years, we were mature adults, why not? I can see what became of him.

At first, all seemed well. It was early 2001 and Nik had finished his education, and was working at IBM in Markham, had gotten married and had 2 children. Great! Life was good for Nik, it seemed he had gotten what he wanted. We chatted via email a few times in the next few weeks.

But then, he showed up on my doorstep with the truth. He was separated from his wife. He had gotten married too young. He had just been laid off from IBM along with 12% of their workforce, and he was living in the basement of a Filipino family’s home as his house had to be sold for the divorce. But there was good news! On his way out of IBM, he had taken a contact list of clients he had been working with and one of them wanted to hire him–The one in Portland, Oregon. Could he stay with me for a bit until he got his own place?

“Uh, OK?” I reluctantly agreed.

The next two months were tough. I had a messed-up guy and his elderly, sick guide dog in my cool little bachelorette apartment. I went to work, and he went to work–the job was real and a good one. But despite everyone’s best intentions, no one knew how to go about getting a blind guy via Canada via Sweden to be able to legally work in the U.S. His boss asked me if I could marry him. Not like this, I complained. But that wasn’t even the issue. Lawyers said he wouldn’t pass the physical. 

One day, after I had taken his guide dog to my vet because he had a horribly infected tooth and I had paid hundreds for him to get it fixed, I hit my limit of tolerance for the situation. 

“You need to leave. Go back to your children. Figure your life out. Get a job where you can actually be legally paid. Get out.”

He was on a plane 48 hours later. And except for a small check in to see if he and the dog made it ok, we hadn’t spoken since.

Until 9/11. And 9/11 was such a huge, perspective changing, distracting event, that it blew whatever weirdness was still lingering out the window. It was during and after 9/11 that we truly became friends. Because we had tried immigration both directions and failed, it was off the table and we never expected to be able to have an intimate relationship. We truly could build a friendship and trust and support each other as friends.

In the 8 years after 9/11, Nik was able to straighten out his life, spend time with his children, get a job, and move to a nicer neighborhood with his roommate, Grant. It wasn’t until his own children moved to the United States with their mother that it ever occurred to us to try again. In 2010, Nik was finally able to legally move here and we started our married life together, 17 years after we met. We will celebrate our 13^th wedding anniversary in April.

It is difficult to know how long we would have gone without speaking without 9/11. At that point, there was just no way I felt like talking to him for a very long time. I needed a break, and maybe the break would be forever. Only a bazaar and overwhelming situation like 9/11 completely distracting me would have allowed me to answer the phone and talk to him on that day and the days following. It strengthened our relationship and clarified the trust and friendship we eventually developed. Although nothing can make up for the tragedy of so many people brutally killed on September 11^th, it is interesting to see how such events change the course of lives in not only the obvious global ways that it did, but on the very personal level. Everyone has a 9/11 story. Mine is not that special. But to me, it pivoted my life in an unexpected way that I am still grateful for each day. 

Getting back to my writing homework series, it’s been so long I forgot the assignment for homework #3. It says “Flash Nonfiction” and I think it was some kind of thing where you set a timer and write for 10 minutes type of thing. I must have been mad that day, because basically I bitched about “The Public,” which is what disabled people call the people that we deal with on a daily basis. But I forgot that other people don’t get what we deal with on a daily basis, so I got a lot of questions from my teacher and classmates about why this woman was harassing me. Well, she was harassing me because I was walking down the street while blind. That happens literally every day to every blind person I have ever known. It just is. But the students in my class thought I must have done something to provoke it. Nope. Just minding my own business being blind. It happens so often that we forget others don’t deal with things like this very often. So, it was a good lesson on code switching and remembering that in some ways, being disabled really is a different cultural experience all together. No blind person would read this and be confused about why a woman was harrassing me because they live it. If I am going to write words that non disabled folks want to read, I am going to have to put it in the language they can understand.

I was using my burrito bag to cross the street, although I couldn’t explain that to this stranger who was admonishing me. I mean, I was using my guide dog, my knowledge of one-way street patterns in downtown Portland, and a smidge of hearing. But I had noticed that I can always get a good vibration with a paper bag with handles and a small amount of weight to it. By holding it loosely in my fingers and turning it 90 degrees, I could tell whether the cars were going in front of me or not by the way it vibrated. This Chipotle bag with a burrito in it turned out to be a choice weight for this task. But “Leave me alone with my burrito bag!” was not going to be of any benefit to me except to make me look crazy.

They say that someone who has put in 10,000 hours into a skill will master it. We understand this to be true and we respect it with certain skills. We respect that a good pianist has put in hours of practice. We know of Olympic level figure skaters who got up at the crack of dawn before school since they were 6 to get to that level and we admire that. Some skills aren’t so obvious. A zookeeper comes to find a random visitor intensively staring at a certain fish in an aquarium. The visitor says, “This water needs a better pH, it’s too acidic for this fish.” The zookeeper is confused until the visitor explains that she is a renowned marine biologist who specializes in this type of fish. The zookeeper’s confusion instantly turns to respect. A long conversation follows, and calls are made to correct the issue. We know that years of study and practice allow for many people to develop special skills that we don’t have, and we defer to their expertise.

I have over 50,000 hours in being a person who has found alternatives to vision and hearing by now. I have also had a good 10,000 or more hours of formal study in nonvisual techniques. It is a unique skill, I understand that. But it is a skill that is not respected, or even seen to be a skill at all. No one can deny that we are a visual species, and vision is convenient in its instantaneousness. But nonvisual skills are not substandard and lesser. In many cases they are better. I laugh when my airline seat gets changed out of an exit row. Who do they think will be better at finding the handle of the escape hatch over the wing in the chaotic darkness of a plane crash? Who is the one who finds and manipulates ways in and out in the dark every single day? I’ve seen how you all lose your shit when you have to do some corporate trust exercise under blindfolds. You barely function. You mistake that experience for what it is like to be me, a person who has a unique skillset. With maybe 10,000 hours of work, you would have it, too. There won’t be time for that in a plane crash.  But my expertise is not deferred to. It’s not trusted or even seen. Who is really in the dark when they don’t understand that facts come from the wind, the chain link fence, or a burrito bag?

In this assignment, I was supposed to play around with the “hermit crab” genre of creative nonfiction, where an essay is hidden in a different style or mode of media. We also played with the idea of parody in nonfiction, which is a bit tricky as it gets pretty grey where the nonfiction stops and fiction starts. This is a play off of a real Facebook group.

facebook

Financing College Group

Private Group 143.7K members

Lisa Ferris

October 2, 2022 3:46pm

Hi Everyone! New to the group and don’t know where to begin. I have a senior in a Dual Enrollment Program. I just filled out the FAFSA and we baaaaarely squeaked by qualifying for a Pell Grant. My kid is kind of a high achiever and wants to go to Yale (heh), which I doubt is in the cards, but I’m trying to be open minded. I think an in-state school is probably more likely what we can handle. His parents (me, stepdad and dad) are all disabled, so also looking for any free or low-cost advice or specific programs that might help him out. It is all quite overwhelming–Any help is appreciated!

👍🏼❤️45 Comments 856

Happy McLovefest

I’m so happy that you are here!!!!!!! 😍😀😄 is SO SO SO hard to figure all this out. 🥲☹️But we gotta do the best for our kids, don’t we? 🧒🏻👦 Don’t have any advice, but just wanted to say Hang in there! You’ve GOT this!!!!!!❤️❤️❤️

Like      Reply   54 likes

Fancy Acronamus

Well, my advice would be to take your EFC and plug it into the NPC of each U and see what COA comes up. Remember, if you apply ED or EA, there are a lot more FAO than if you do RD. Have you done the CSS, yet? You need to have that for EC schools. Also, if your son has a lot of DE credits, or does he have any AP or IB? What is his GPA and SAT? What about the CLEP? All of these can increase or decrease the NT dramatically.

Like      Reply   34 likes

Lorelei Gilmore

I KNOW what you MEAN about it being SO overwhelming. My daughter has a 5.6 weighted GPA from a private prep school. Editor of the school paper, varsity field hockey, first in her class. You know, all the usuals. And I had no idea what I was going to do when she got into both Harvard, Princeton AND Yale! I was so scared and just devastated that I wouldn’t be able to afford to send her to her dream school! But she was a legacy at Yale and so her grandparents were so proud of her that they just offered to foot the bill. Do you have any rich grandparents? That is the way to do it, if you can! Now if she can JUST find a good boyfriend there, she will be set. She just doesn’t understand the importance of Yale marriage prospects. She is so frustrating!!!

Like      Reply   8 likes

Beavis MagaTrump

Wait? Disabled people can have kids? And they are allowed to go to college? No way. I bet they give you guys a free ride. Great. Another “identity group” that is going to steal scholarship money from my straight, white, cisgender, able-bodied son. No room for Real Americans in college anymore!!!

Like      Reply   1 Like

Rosanne Connor

My kid just filled out the FAFSA, too. And she kept asking me all these questions about my income. I didn’t understand why, until I figured it out suddenly. Let me get this straight—is this correct? These colleges expect me to PAY for her college? Like am I required to do this? I mean, she is 18 this summer. I thought I was done? What if I just say no? Won’t someone else pay for her then?

Like      Reply   54 likes

Edward Jones, Financial Planner

What you need to do is divert any savings assets to a Roth IRA, then convert any savings your son has to an ABLE Account and divest any stocks and bonds to liquify assets to put into a 529 and then pick a home improvement project and get busy. You can also refinance your mortgage to a higher interest rate and slow payments over time to show that you have more debt. I am happy to help you plan for your son’s future so that college costs (and taxes!) will be minimal. Feel free to give me a call at (503) 555-1234 and ask for Ed!

Like      Reply   42 likes

Duncan Downer

Its all a scam anyway. The highly competitive schools only pick rich, legacy kids who’ve paid a college admissions wizard a million dollars to write their essay for them and jack up their SATs. Your kid is never going to get in unless you buy them a new science wing. Sure, they will string you along for a while, they will act like they want your kid, but even that is a scam to make them look more competitive! Then they will defer your kid just to see who is ready to pony up their exorbitantly jacked up tuition prices and leave him hanging until all other offers have dried up, just because he thinks he has a chance to get that Ivy League shine. But face it. Your kid will end up over educated and in debt working as a barista when he is 40. Sucks, but true.

Like      Reply   9768 likes

Olivia Overshare

I know, right?! It’s so tough! I just don’t know what to do! I want my kid to be able to go to college so much, but I am a single mom and I just got divorced from my 3^rd husband, and well…I am living with this other guy who is kind of my boyfriend but not really, or at least only until I get a new job because I just got fired from the last one. I have to take care of my mother, too, who has emphysema, but she still constantly smokes no matter what I tell her. I’d move in with her, but the smoke is SO BAD, and Craig…my boyfriend or the guy I currently live with, or whatever—he doesn’t want me to smell like smoke and he already hates my kid for smoking weed in the house all the time. I mean, I could move in with my mom and tell him to go to hell but you know, every once in a while I get lonely and well, he is good in bed lololol. So, I just don’t know what to do when I am out of work and no place to live but it would be nice if a fairy godmother would come down and sprinkle a little ambition on my son so he would go off to college and then maybe eventually I could live with him while I recover from this current guy. But Craig is SO handsome the way he rolls over in the middle of the night sometimes for a little piece of me and he—well, anyway. Will colleges pay for a kid who gets TANF?

Like      Reply   32 likes

Lisa Ferris

Well, thanks everybody. This has been…helpful and is….uh, a lot to think about. If anything, you all have clarified that this is a convoluted mess, so fun year, I guess?

Like      Reply   6787 likes

I recently took a class on creative nonfiction writing and decided to post these quick, short weekly assignments in a series here. Assignment #1 was just a stream of consciousness assignment where you pick a mundane thing and write as much detail as you can about it in 20 minutes. I did spell check these and fix typos but did nothing else to edit them.

Today I walked with my husband to a client’s house to look for a better route that wasn’t marred with construction. It was about 1.5 miles away. After leaving him off there, I walked with my guide dog back home. I decided to see if I could get through going the shortest way, which was a ton of construction in weeks past, and my blind husband has been both treated wonderfully by workers on this weekly walk and has been yelled at. I decided to be brave and see if I could get through. 

My guide dog and I walked down the “stroad” which is the worst kind of street. Its loud, windy, stinky and busy with cars. The sidewalk was fine, but it smelled of tar and gasoline and the wind was cold today. At least it was not raining. As we walked, I get all kinds of information from my guide dog, Marra. If there is someone walking behind us, I can feel her looking back. The harness handle I hold on to will bend to the left a bit as she strains to see what is coming. If a dog or something incredibly interesting is up ahead, she has a bit more spring in her step and she has her head held high, which makes the harness handle rise a bit. If she is looking at me to get her next instruction to try to tell me something is in the way, I can feel the harness handle tilt up and to the right towards me. 

Marra loves to find things, so she knows what I am looking for when I tell her to find a button. Of course the beg button on the crosswalk is 50 miles from the place where I need to line myself up from traffic and cross. This means I cannot stand near it with my hand on it and wait for the button to vibrate to tell me when the “walk sign” is lit up. I will have to wing it a bit and use what hearing I have. I listen to traffic patterns and am careful not to mistake a left turn car for a parallel car that indicates when I can go. I always give Marra the command to go forward at street crossings, but she is allowed to over ride me. Mostly, when I cross streets, I use The Force. Where I just go out when all the indications say I should go, light, traffic patterns, guide dog approval, and will the cars to stop for me with a death stare. I imagine waving my hand. “You WILL let the blind lady cross the street.” By the way, SFU, you know where drivers are so polite and kind and always wait for me? Vancouver, BC, Canada. That is why I like to go there and stay at the YWCA 2 blocks down the street from the skytrain. Lots of safe, free, accessible travel. 

 When we crossed onto the block where the previous offending construction had been, we walked briskly for a bit and then I could feel some apprehension in my dog. Something was up. The questions was…could I get around it? All of the sudden she stops. I put a foot in front of me and there is a barricade. I tell her to “find the way” and she takes me over to the curb and steps me off to my right. I think we will just hug the left and walk into the street for a bit to get past this. This street is moderately busy, much better than the stroad I just turned off from. If construction is going on, cars should slow down and watch out. I could hear them passing slowly to my right, one at a time.

But it was a no go. A hand from nowhere grabbed me. I said “please stop and listen to me so we can work this out.” I tell that I am blind but also don’t hear well. I say that I know there is construction, but I can walk around it. If they want, they can let me grab their elbow and I can follow them. I can smell this guy, I am 95% sure he is a construction dude that just want’s me quickly out of the way. I’m hoping we can make this quick and painless and he won’t freak out. I show him how to say yes or no to me with his fist in my palm. I say, can you walk me through it? A rough, gloved fist shakes no in my hand. Ugh. I know they are letting cars through, why are pedestrians less important than cars? “Do I have to turn around?” His gloved hand, wadding into a tight fist, indicates, Yes. I can tell he is relatively friendly and not too freaked out by me. If I just turn around, I won’t face more crap that might ruin my day like if he were to call the police on me or something. 

I give Marra the instructions to turn around and we go back down to the stroad intersection. I could walk all the way back the way I came, but I am on the North side of the stroad now, so I could walk up a street straight to my house. It is a quiet street, but I have never found it from this direction before and neither has Marra. I get out my braille display and turn on Blind square on my phone. My husband can listen to blind square as he walks. But with a braille display, you have to be more deliberate. I have to stop at each corner and wait for it to sort of sync and read the information while I am stopped. The display can hang from a leather pack that I can read while I walk, but I am not that coordinated. I always. Have to stop to read it. I only need to find where to turn and then I am good. 

I walk and stop at each corner. This is the one thing guide dogs always do, they stop at corners. When she stops and I can feel the curb slant down and get bumpy. I go to the braille display. It tells me I am at 54^thstreet. I need to get to 60^th. I walk and walk and walk some more. I can tell Marra is slowing down a bit. She is 9 now, and she will probably retire in one more year or so. So now, our walks often end up at a very slow pace. As we walk with the loud cars to our right, I can feel every step she takes, steady on the flat pavement. She takes two steps to my one, and every two steps I feel indicates a safe place to land my next footfall. Finally, I stop at the next intersection and blindsquare reports 60^th street. I turn left to the north and it’s all smooth sailing from there.