2018

2018 is cooking dinner in my kitchen with my earbuds plugged into Pod Save America - raging at DT in my head along with the Pod boys. It is going about my regular day, smiling at regular people, working a regular job, while the world might be crumbling around me. It is a state of constant helplessness with occasional commercial breaks of action  - a protest here, election canvassing there, donating to a cause over here. It is utter guilt for the ease of my uninterrupted life while so many others suffer. 2018 is sipping my morning chai and looking out my front window at my beautiful neighborhood, and beyond that - a dream city, and feeling peaceful and happy and lucky but also the slightest bit empty.

Autism in Photos

I've been working on a photo project: Familia Guzman, the New York City Days. I have photos from that time period scattered in boxes, on my external hard drive, in random emails, and I wanted to put them all together into a book with some creative order so we could enjoy looking at it. I imagined us all snuggled together on the couch as a family, the glow from our fireplace lighting our faces as we laugh and reminisce. Or something like that.

So last week, I started compiling photos on blurb.com in hopes that I could create a family photo book in time to wrap up and put under the Christmas tree.

Spoiler alert: Due to a minor emotional breakdown, I did not make my deadline. It's gonna be a Valentine's Day gift now.

Instead of creating a cute family photo book of memories and nostalgia, I've had a week-long flashback to the hardest couple years of my life.

Because I gave birth to Noé six months after we landed in NYC, and Asher was born two years later, and we were only there a total of four years, much of the book is Noé-centric. We collected hundreds of photos of Noé from ages 0-3. I began to pick through all of his earliest moments with a fine-tooth comb.

I'd always wondered if I had given him enough love and attention during those earliest years. Maybe I was a frigid mom? I wasn't ready for kids. I was finishing up my MBA when I discovered I was pregnant. The reality of my pregnancy surfaced after I ran out of a class presentation just seconds before throwing up outside the University of Oregon Business Administration building. A blood test confirmed it soon after. Noé was kind-of dropped on us, like an Amazon package arriving on your doorstep that you were sure you hadn't ordered.

I wondered if he smiled. I wondered if he was disinterested in me and in his surroundings and had other obvious autism markers, but I was too absorbed in my own life to see this reality. I just couldn't seem to remember anything with exact certainty from that time period.

It was a huge relief to unearth a happy baby from those pictures. And, for the most part, a baby that interacted normally with the outside world. I held him and he liked being held. He smiled, laughed, pointed and played. He looked at his board books, stacked his blocks and played peek-a-boo like a boss. Sure, looking back, there were some obvious differences. He was obsessed with certain things: watching the ceiling fan in our apartment, putting his hands in running water. He was the worst sleeper in the history of babies. He didn't babble nearly as much as other babies his age.

I now have photo evidence of when everything changed for him - shortly before his second birthday. He no longer looks at the camera and smiles for pictures. He looks slightly disheveled and confused.

I remember taking him to an easter egg hunt with many of his little pals from church when he was 2 years old. All of the other toddlers are running around filling their baskets with bright, plastic eggs, but there is Noé, alone in the corner, peering through the wrought-iron fence, mesmerized by the cars racing past on the adjoining street. I hand him a plastic egg and he throws it down. Then he picks it up and throws it down again. I show him how to put the egg inside his basket and how to pull it apart to discover the treat inside. He toddles away.

It is now time to take group photos. All of the kids smile brightly at the camera and show off their overflowing baskets. Noé has turned himself away from the camera, his basket hastily discarded in the grass.

It was so easy to dismiss his strange behaviors and ever-growing developmental deficits. Oh, his world was just rocked with a new baby brother. Oh, he was premature, he's still catching up. Oh, his father was a late talker.

By age 3, our new reality has set in. Most of the photos of Noé are taken during his many therapies.

There is Noé with his morning ABA therapist matching letters!

There is Noé with his afternoon ABA therapist imitating with playdough!

There we are on the subway, headed to Occupational Therapy!

And nothing about our lives has been normal since. Look right here, the photos tell it all.

Mom....

When Noé calls for me, the sound echos from deep inside himself. It's a plea that stops me cold. It is also a call of affection and love.

We fought many years for verbal communication. We had some talented, optimistic teachers and therapists dedicated to making it happen for him. We made Noé repeat his words over and over, from morning until night, hoping that initial sounds would morph into full words and then into sentences and life would suddenly click and we would have a verbal child!

After years of watching him fight and struggle for every sound with really no marked progress, and growing increasingly frustrated by not being able to truly communicate with him, we looked for new answers.

When we moved to Seattle five years ago, his new school team pushed for augmentative and alternative communication (AAC) delivered from an iPad. The iPad would be his voice.

We'd always shied away from this - we were told previously it was not implemented well in the schools. Teachers weren't properly trained on it. AAC became a crutch rather than a tool for true communication.

We were also warned that he would likely lose the few words that he had learned to say.

BUT WE NEEDED TO ABLE TO COMMUNICATE WITH OUR CHILD.

So we handed him an iPad, secured training for his teachers, found a speech therapist who specialized in kids like Noé, and hoped for the best. It wasn't a magic bullet. He was still lacking some of the fundamental skills of communication. But slowly, he started making independent requests using his iPad. Soon, he was doing much of his school work and greeting others using his iPad as his new voice.

And he lost all of his spoken words.

Except 'Mom'.

Usually he calls for me when he needs something and he's frustrated. Or when he's hungry. Sometimes, just before he goes to sleep and I'm giving him goodnight kisses, he'll look at me and mouth the words.

Mom....

I have recurrent nightmares. Noé is lost in a forest and he's pleading for me to come to him! We are in a large crowd and someone is taking him away from me! He is struggling in the water and I can't reach him! It is always dark and murky, like a bad made-for-TV movie. I fight and struggle but I can't reach him. I jolt upright from my sleep, that three letter utterance pounding in my head.

MOM!!!


So many people have asked. How does it feel to have a child who can't talk to you?

It must be lonely.
It must be frustrating.
It must be heartbreaking.

Being non-verbal was often described to us as the worst-possible outcome of an autism diagnosis, and it become our reality.

Today, I don't understand the question.

Of course he talks to me.

He talks to me with his eyes, his body language, his actions and behaviors, if not with his iPad. We've learned to listen to him in the silence. To talk to him in the silence. To love him in the silence.

When we were moving down to Portland this past summer and Noé gathered all of his most prized possessions and put them in a box and carried the box around with him everywhere we went for an entire month, we knew exactly what he was telling us.

We tried to calm his fears with soothing words, but also with as much immediate stability as possible. We put together his bedroom before our own, and even before we unpacked our kitchen. We toured his new school and met his new teachers. We took bike rides and walks around our new neighborhood and visited all of the local parks and shops.

THIS IS YOUR NEW HOME. YOU ALWAYS HAVE A SAFE PLACE HERE WITH US.


It can be frustrating.

When Noé won't sleep, for example. Is he sick or in pain? Is he anxious? Is he just being a jerk and refusing to go to bed? Sometimes I'm not sure. Sometimes I guess wrong.

But it is not any less frustrating than when my other son has a bad day and won't tell me what is wrong.


I hear from so many fellow moms who get tired of hearing their children call for them all day long. I get it. There is a lot of mundane, thankless work (and lost shoes) in the frayed edges of parenthood.

But will I ever tire of hearing both of their voices call for me? Never. It's complicated bliss.

Mom....

Portland

Ramona, Grant Park

We've lived in Portland for a month now. It feels both strange and wondrous.

When we get on the freeway after visiting my mom, it is still weird to exit back into Portland onto I-84 rather than continue on towards Seattle on I-205. It was eerie to take Noé to school on his first day to the school building my dad attended. I, of course, have no memories of his high school years, but I always try to picture him walking those hallways circa 1969.

A lifetime full of memories in the city that has always had my heart. I was at the post office a couple weeks ago and I had this instant flash bulb memory of waiting in line as a 21 year old at that same post office on no sleep and sporting sweats. I had just finished my Washington Seminars DC internship and I was mailing off final papers in exchange for a college diploma. I was so relieved. BYU was hard for me and I was glad to be done.

We pass Blind Onion Pizza and I remember that first impromptu lunch with Ed when we both worked for The Oregonian. We discovered we were both reading Phil Jackson's Sacred Hoops and both followed women's basketball religiously. It's amazing where one slice of above-average pepperoni and sausage pizza can take you in life.

We take the boys on a bike ride down to Saturday Market for elephant ears and I am once again a little girl and my Grandpa Razz is handing me my very first taste of the cinnamon sugar and doughy goodness wrapped in wax paper and only found in Portland.

I feel relief because the boys are settling well. Noé has been doing really well since school began and Ed arrived from Seattle. The special ed department at his school seems well-organized and the activities they have done, like making slime for science class, keep him engaged. Asher, although he misses his friends in Seattle, is enjoying his new school and all the activities. He made friends from the first day and he likes most of his teachers and classes. It isn't perfect - they didn't have a Spanish class to accommodate him and his core teacher sounds like she is working overtime to instill a hatred of reading in her students. But other things are really outstanding - such as the music program. He is playing in two jazz bands as well as the symphonic band and running cross country and loving it all. He will thrive and I think he will make even better friends here who will take him through high school.

After a hot, smoky beginning couple of weeks, the weather has been glorious. Sunny during the day, cool at night, with hints of autumn in the air.

Ed and I sit and stare at each other across the table and then laugh at our ridiculous life. We go to bed and we wake up together as a family. That itself feels magical after years of uneven, grueling work schedules and swapping childcare responsibilities. We both work from home. No commute, one aging Honda CRV that lies dormant on the street, an arsenal of bikes in the garage. A tiny charming home in the coveted Grant Park neighborhood. We're making less money than we have in the past, but we cover the bills just fine. We bike up to Alberta Street for warm croissants and raspberry jam at Petit Provence and ice cream at Salt and Straw.

A bus whisks Noé away to school and brings him home late each afternoon. Asher rides his bike the mile to his middle school early in the morning with his sheet music and stick kit for early morning jazz band. Next year, the renovations for the high school around the corner from us will be complete and they can walk to school, through Grant Park and past the bronze statues of Ramona and Henry and Ribsy (this is Beverly Cleary's neighborhood after all), for their final years of public education. The symbolism of my kids trudging past their childhood book heroes each day and entering the doors of the large, historic high school will not be lost on me.

I feel the pull of my kids, the waning years of intimacy with them and any remaining influence on their world view. This is our final sanctuary. I aim to regret nothing.

HTC

Beginning of my second leg, Hawthorne Bridge at dusk.

Last Friday and Saturday I ran the Hood to Coast.

At one point, sometime in the dark, blurry-eyed hours of Saturday morning, my team sat in our van and declared, "We discovered hell. A HTC race that never ends." And then it ended and it was the best thing we had ever done.

On Sunday, I rested. I rested because it felt like someone had violently beat my legs and back and feet with a rolling pin, nonstop, for an entire year.

On Sunday, Asher said, "This is the last day of summer and of my freedom. LET'S DO SOMETHING FUN!"

I said, "Asher. If you can find something fun to do in this house, I'm all in."

Asher said, "Well, how about a board game."

I said, "PERFECT!"

He walks back into his room and brings out ... Twister.

Un tributo para mi tia Cira

My tia with Juan Gabriel, not when we went to his house in Cuidad Juarez.

My tia Cira died on Aug. 13, on the eve of her 68th birthday. The cause was complications from cancer. We celebrated her life this past week, and I was lucky enough to give a eulogy for her on Thursday night, in Spanish. I share it here, in English and Spanish:

Good evening. Father Jose, thank you for all your remarks tonight. Among the many things you spoke about was the Holy Spirit. Well, now I'm going to share some thoughts about the spirit of my tia Cira.

It's a little strange to say this, especially on such a sad occasion, but it gives me such great joy to be here with all of you. Especially cousins, aunts and uncles, some of whom I haven't seen in so many years.

But it just shows you that even in a time of death, when we remember my tia Cira, there is life.

There is life in this building.

There is life in the memories that we have of her.

There is life in the actions of her experiences, a joy that she brought to everything she did.

And especially, at such a profound volume! Who is going to forget that voice? Every time I called home, my father and I always said the same joke when I would hear talking in the background, usually in the other room:

"Tell her I can't hear her!"

It almost pains me to retire that joke, but well, that's how it goes.

Life and joy. Remember those words, because that's how I'm going to choose to remember my tia Cira.

But first, let me quickly acknowledge why I do feel pain and sadness over the death of my tia Cira. As Juan Gabriel, her favorite singer, said in "Amor Eterno":

"How I wish, that you were still living, that your eyes had never closed, so I could keep on seeing them..."

I always explain to all those who meet me and get to know me that I lived with three mothers. And thus, to this day, I also say my two sons have three abuelas. Now, I'm not going to tell you how they rank them, because I don't want to offend anyone here...

My mother, Aurora; my tia Teresa; and, of course, (motioning to the open casket), my tia Cira.

They all lived with me and raised me ever since I was a baby. And that's why I feel this loss so profoundly.

From my mother, I learned the importance of family. "Family is family," she always told me. And we are this way with my immediate family to this day.

From my tia Teresa, I learned the importance of education. She always pushed me and helped me with my homework, and she was the first one to mention Stanford University, back when I was 15 years old. Seven years later, I graduated from there, and I'm happy to say my three mothers were there for that occasion.

My tia and me on my graduation day from Stanford in 1999. That was a good day.

And from my tia Cira, I learned the importance of joy. She taught me to enjoy and have an enthusiasm for life.

This manifested itself in many ways.

As I've mentioned, my tia loved Juan Gabriel. When I was 13 years old, she took me to Torreon to see my tia Lupe, who is here tonight, and her family. We went on the bus, because as you all probably remember, she hated to fly. We had a stop in Cuidad Juarez and some time to kill. Well, Juan Gabriel has a house in Cuidad Juarez, and my tia was determined to find it!

We had also taken a camcorder with us on this trip, and she wanted me to record the moment she knocked on the front door of Juan Gabriel's house. I'm reasonably certain this video is still somewhere in my parents' house...

We get there and she knocks on the door. Some guy comes out, a personal assistant probably, and she asks him:

"Good morning! Is Juan Gabriel home??"

I imagine that she really, truly believed that she was going to see Juan Gabriel that day.

But oh, how she loved his music. And all kinds of music, really. She liked it so much that she loved to sing as well. If there was a mariachi band, she would for sure be singing. Without fail. She was going to tell it to you "borracha y en su juicio." For example, she sang at my wedding. (Next week, we celebrate our 17th anniversary.) We had a mariachi band, and we apparently had a singer. And the nice thing is, she'll always be on my wedding video, singing happily at our wedding reception.

The wedding singer. Always and forever.

I also remember how much she loved the Dodgers. Her favorite teams were the ones from the 70s and 80s. The teams of Garvey, Lopes, Cey, Monday and "her boyfriend," as she referred to him, Dusty Baker. Until her final days, any time I mentioned Dusty Baker in any context, she would always correct me and say, "my boyfriend Dusty Baker." When "Fernandomania" hit in 1981, she was front row for all of that. That team managed to win the World Series and that was always her favorite moment related to the Dodgers. But she always loved going to games and watching them on TV. And that made me a fan for life. When she died last week, by pure coincidence the Dodgers were playing in Seattle, where I currently live, the following weekend. So I went to all three games, Friday-Saturday-Sunday, because I wanted to do something in her memory. My tia would have enjoyed seeing the Dodgers play, and win.

Some newspaper clippings my tia had saved from that championship season. Sweet, sweet memories.

One other memory I have of my tia has to do with her citizenship. I was pleased to see her wearing a scarf with an American flag print on it. My tia came to this country at 19 years old in 1969, and she became a U.S. citizen during the 90s. I was so incredibly proud of her for achieving that goal. And she took her citizenship very seriously, voting in every presidential election since 1996. During 2008, the year President Obama won, she had great enthusiasm. She went to the annual Mexican Independence Day parade in East L.A. sporting her Obama button. L.A. Mayor Antonio Villaraigosa was the grand marshal and when his car came up, my aunt ran out to the street to go shake his hand and hug him. He sees her button and starts a "viva Obama" chant, and the crowd is chanting back. All of this from my aunt approaching him! On Election Day, after she voted, she stood outside the building and asked everybody who came out: "Who did you vote for? Who did you vote for?"

As I said, life and joy.

It's certainly easy to see and remember what we lost: an aunt, a sister, a grandmother, a friend.

But what will be hard, dare I say impossible, to forget will be all the memories she shared with all of us.

And I urge all of you to hang on to those memories, remember the good times, because she would have done the same for all of us.

Because her life and joy bore out an Eternal Love ("Amor Eterno"), to call back to a theme I mentioned before. I love you, tia, and thank you so much for all you gave me. And as Juan Gabriel said in that song:

"Sooner or later, I'll be with you again, so we can keep on loving each other."

Thank you very much, and may God bless you all.

My tia's quinceanera in 1965, four years before she came to the U.S.

Buenas noches. Obispo Jose, gracias por todo sus observaciones. Unas de las cosas que usted menciono era el Espirito Santo. Bueno, ahora voy a compartir unas observaciones sobre el espirito de mi tia Cira.

Es un poco raro dicir esto, especialmente en una ocasion tan triste, pero me da tanta alegria estar aqui con todos ustedes. Especialmente primos, tios, tias que no he visto en tantos anos.

Para que miren, hasta en tiempos de muerte, quando reordamos a mi tia Cira, hay vida.

Hay vida en esta iglesia.

Hay vida en las memorias que tenemos de ella.

Hay vida en las acciones de sus experiencas, una alegria que trajo a todo que ella hacia.

Y especialmente, a un volumen profundo! Quien se va olvidar de su voz? Cada vez que yo llamaba a la casa, mi papa y yo siempre deciamos el mismo chiste quando la oiamos hablando en el otro cuarto:

"Dile que no la oigo!!!"

Hasta me da lastima retirar ese chiste, pero bueno, ni modo.

Vida y alegria. Recuerdense de esas palabras, porque asi es como yo quero recordar a mi tia Cira.

Pero primero, quero reconocer rapidamente porque si suento dolor y tristeza sobre la muerte de mi tia. Como Juan Gabriel, su cantante favorito, dijo en "Amor Eterno":

"Como quisiera, que tu vivieras. Que tus ojitos jamas se hubieran cerrado nunca y estar mirandolos..."

Siempre les explico a todos que me conocen que yo vivi con tres madres. Y hoy dia, tambien digo que mis do hijos tienen tres abuelas. Bueno, yo no voy a decir en cual orden ponen las abuelas ellos, porque no quero offender a nadie aqui...

Mi madre, Aurora; mi tia Teresa; and, claro (senalando a mi tia), mi tia Cira.

Ellas vivieron conmigo desde pequeno. Y por ezo, siento esta perdida tan profundamente.

De mi mama, aprendi la importancia de la familia. "Familia es familia," siempre me dice. Y somos asi en mi familia hasta este dia.

De mi tia Teresa, aprendi la importancia de la educacion. Ella fue la primera que menciono la universidad de Stanford, cuando tenia quince anos. Siete anos duespes, yo gradue de alli, y estoy feliz en diciendo que mis tres madres estaban alli para la ocasion.

Mi tia y yo en el dia de mi graduacion en 1999. Ese era un bien dia.

Y de mi tia Cira, aprendi la importancia de la alegria. Ella me enseno a disfrutar y tener un entusiasmo para la vida.

Esto se manifesto en muchas maneras.

Come he mencionado, mi tia amaba a Juan Gabriel. Cuando tenia trece anos, ella me llevo a Torreon para ver a mi tia Lupe, quien esta aqui esta noche, y su familia. Fuimos en el cameon, porque como ustedes recuerdan, no le gustaba volar. Teniamos una parada en Cuidad Juarez. Juan Gabriel tenia una casa en Cuidad Juarez, y mi tia la iba encontrar!

Tambien llevamos una camera de video, y ella queria que grabara cuando ella tocaba la puerta de la casa de Juan Gabriel. Estoy seguro que todavia existe este video en la casa de mis padres...

Llegamos a la casa y toca la puerta. Alguen sale, probablemente un asistente personal, y le pregunta:

"Buenos dias! No esta Juan Gabriel??"

Me imagino que ella de veras pensaba que iba a ver a Juan Gabriel ese dia.

Mi tia y Juan Gabriel, no en el dia que fuimos a su casa en Cuidad Juarez.

Pero como amaba su musica. Y todo tipo de musica, en realidad. Le gustaba tanto que le gustaba cantar tambien. Si habia un mariachi, de seguro que ella iba a cantar. Sin falta. Te la iba decir borracha y en su juicio. Por ejemplo, ella canto en mi boda. (La proxima semana, vamos a celebrar diecisieste anos de casados.) Teniamos un mariachi, y aparentemente tuvimos un cantante. Pero lo bueno es que ella siempre estara en mi video de boda, cantando alegremente en la recepcion.

Mi tia cantando en mi boda, 2001.

Tambien me recuerdo cuanto amaba a los Dodgers. Sus equipos favoritos fueron los de los anos 70s y 80s. Los equipos de Garvey, Lopes, Cey, Monday y "su novio," como ella lo nombraba, Dusty Baker. Hasta sus ultimos dias, cada vez que mencionaba a Dusty Baker en caulquier contexto, ella siempre me corrigia y decia: "mi novio Dusty Baker." Caundo la "Fernandomania" pego en 1981, ella estaba primera fila para todo eso. Ese equipo logro ganar la Serie Mundial y ese siempre fue so momento favorito de los Dodgers. Pero a ella siempre le encanto ir a los juegos y verlos en la television. Y eso me hizo a mi un aficionado por vida. Cuando se murio la semana pasada, por pura coincidencia, los Dodgers estaban jugando en Seattle, donde vivo actualmente, el siguiente fin de semana. Asi que fui a los tres juegos, viernes, sabado y domingo, porque queria hacer algo en su memoria. Mi tia hubiera disfrutado ver a los Dodgers jugar, y ganar.

Recuerdos de 1981 que mi tia guardo.

Otro recuerdo que tengo de mi tia tiene que ver con su ciudadania. Me alegre de verla con una mascada con una bandera americana. Mi tia llego a este pais a los diecinueve anos de edad in 1969, y se hico cuidadana americana en los 90s. Yo estaba tan increiblmente orgulloso de ella que la logro. Y tomo su ciudadania muy seriamente, votando en cada eleccion presidencial desde 1996. Durante 2008, el ano que gano el Presidente Obama, tuvo un gran entusiasmo. Fue al desfile anual del Dia de la Independencia de Mexico en el Este de Los Angeles luciendo su boton de Obama. El alcalde de Los Angeles, Antonio Villaraigosa era el gran mariscal y cuando su carro se acerco, mi tia corrio a la calle para saludarlo y abrazarlo. El vio su boton y comienza un canto de "viva Obama," y la gente repite el canto. Todo esto porque mi tia se acerco! El dia de la eleccion, el cuatro de noviembre, despues de que ella voto, se quedo afuera del edificio y les pregunto a todos los que salieron, "por quien votaron? por quien votaron?"

Como les dije, vida y alegria.

Es facil ver y recordar lo que perdimos: una tia, una hermana, una abuela, una amiga.

Pero sera dificil, y dire imposible, para olvidar va ser todos los recuerdos que compartio con nosotros.

Y yo les exijo a todos ustedes que detenganse de esas memorias, recuerden los buenos tiempos, porque ella viera hecho lo mismo para nosotros.

Porque su vida y su alegria crio un Amor Eterno, para volver a llamar a esa tema que mencione antes. Te quero bien mucho, tia, y muchas gracias por todo lo que me diste. Y como dijo Juan Gabriel:

"Tarde o temprano, estare contigo para seguir, amandonos."

Muchas gracias, y que Dios los bendigan.

Sick

Noe is sick. He has a fever, probably a summer cold, but I'm keeping an eye on it.

I hate it but I also secretly love it when he's sick. He doesn't get sick very often. The last time I remember him running a fever was when he was in sixth grade and in bed for over a week with a bad flu.

It is remarkably obvious when he is ill. His constant movement and OCD behaviors grind to a halt and he lays eerily still in bed and stares up at me with his sad, moist eyes.

I've been trying to analyze why I secretly love it. This has to stay a secret because I am a mom and moms aren't supposed to enjoy seeing their children ill. I don't enjoy seeing him suffer ... at all. It's not about that. But. I do enjoy having a problem surrounding him that I can actually fix.

I can give him medicine and liquids. Make him comfortable with blankets and pillows. Put a cold washcloth on his forehead to take down his fever, or rub his back. I can read him a story or put a vinyl record on to help district him from his discomfort. Eventually his fever lifts and his energy returns. I can't cure autism, but I can take down a fever.

I also get a glimpse of him without all of his autistic behaviors. Sadly, I think he looks most like a typical kid when he is under the weather. It makes my mind wander a bit, thinking about what he would be like without the yoke of his autism. It is futile wander, always leading to disappointment when he recovers and inevitably resumes his stims.


Postscript: It wasn't a summer cold, but strep. Confirmed at the doctor for the both of us when I woke up with my throat on fire a day before our move down to Portland. Another challenge of raising a nonverbal autistic kid - figuring out when to see a doctor. Unless he gives his illness to me, I don't always know what is going on in his body. We are now recovering together in our new Portland home stacked high with unopened boxes.

Belief

It is almost bedtime on a warm July night. The open bedroom window offers a gentle breeze. We are snuggled into our summer book of the week.

A sentence grabs his attention. The teenage daughter in the story is rebelling from her Catholic upbringing.

"Is it really ok with you if I choose what I want to believe about God?"

"Yes, mijo. As long as it does good for others and is true to your heart, I will always support you."

I watch his face relax. He reaches for my hand.

I can offer him this gift.

Language and Race

I’m currently reading the Trevor Noah memoir - Born A Crime. It’s a really interesting look at apartheid through the lens of a child growing up as “colored.” He makes lots of really interesting observations about race. One of his best observations is when he explains how “sharing a language” is more powerful than sharing a skin color. He talks about his experience entering the newly desegregated public school system in South Africa. He could speak English and several African languages, so he was accepted by all groups even though he was the only “colored” (half black, half white student) in the school. He eventually felt the most comfortable around blacks and joined their group.

Interestingly, in America, Trevor would have been identified as black. But in apartheid South Africa, “colored” was its own category of people and they were separated geographically from both blacks and whites, and given their own set of rights (less civil liberties than whites, but more than blacks). I'm a little embarrassed that I knew none of this before reading this book.

I find so much truth to the power of shared language. Growing up with lots of immigrant and refugee students in my classes at school, they seemed much less like “the other” as their English improved. Ed always tells me how much easier his life became at his Boston prep school once he lost his East LA accent and learned to talk like the other East Coast kids. Every incident of racism that I can remember Ed experiencing occurred before he was given the chance to open his mouth. Once people hear that he speaks flawless English, he is mostly accepted - or at least left alone.

When Ed and I were dating and I started to introduce him to extended family, I’m pretty certain this “shared language” alleviated fears in some of my oldest relatives. If Ed had spoken in broken English, or even had a strong accent, the “sell” might have been harder.

I’m afraid this observation could be interpreted to mean that everyone should speak English in America. Rather, I see it as stating a fact of human nature - and being aware of it so that you can make more of an effort to find common ground and friendship when there are obstacles of language.

Privileged

I grew up thinking I had a really hard life. I was a survivor. Oldest of five? All of the pressure! All of the extra responsibilities! Babysitting my little brothers and sisters! I always played the victim. I didn't get into my school district's Talented and Gifted program even though I knew I was brilliant. The coach didn't played me enough even though I was clearly the best on the team.

I tried to use my victimhood to motivate me. I took all of the hard classes in high school to prove I should have been a 7-year old TAG kid who rode the bus once a week to a special school in a faraway location. I ended up making all-league basketball my senior year. But really, the victim look was pathetic on me.

Between the lines you can see my privilege oozing out. A college prep education with plenty of extracurriculars. In high school and college, I worked jobs for gas money and movies, not food or rent. A spacious home in a quiet, safe neighborhood. Two parents who loved each other and a larger family who loved and supported me.

A friend once said about the kids in our neighborhood, "We had everything we needed, and a few things we wanted, and nothing more." We had a little more than most, but I didn't know that until much later. There truly isn't a better way to grow up.

Into my forties, I am still realizing all the ways my life has been charmed. It has been a slow process, this unearthing of my privilege. Kind of like digging through sand with my bare hands. The sand is always shifting and the bottom still isn't in sight.

I remember being a senior in high school and an Asian friend explaining to me the concept of "Driving While Asian." We were sitting in AP English with our copies of Things Fall Apart and he kept insisting that cops targeted him and other minorities on the road. They would pull him over for no reason, and even occasionally harass him. This was my introduction to racial profiling and I thought he was being completely ridiculous. I could read a book about blacks in Africa and believe their oppression, but I couldn't accept it was still happening in my own country.

A few years later, after I met Ed, I watched him get pulled over by cops needlessly and ridiculously. I saw it with my eyes in real life, and I could no longer deny it. I started doing most of the driving and handling all interactions with law enforcement. It was easier.

And later we had kids and lived in a little town called Reston tucked deep into the DC suburbs. Reston was supposed to be this shangri la of the south. Constructed in the early 1960s by an eccentric and idealistic millionaire, it was explicitly unsegregated and meticulously planned. Quite diverse in terms of race and income, it really did live up to most of its hype, but privilege didn't disappear completely.

Reston was comprised of several neighborhood villages. Each village included different types of housing, a central shopping area, and often an elementary school and park. The villages were connected by roads, but also by a system of wooded trails for biking and walking. We spent a lot of time walking and biking those trails with a young Noé and Asher. Besides the public parks, most neighborhoods had their own private playgrounds. Technically, these playgrounds were only for the kids that lived in the neighborhood, but no one really enforced that rule and kids were free to play anywhere.

The boys LOVED one of the private parks in particular, nestled right against the Reston trails near our home. I think it was the fast, twisty slide that warmed their little hearts the most. One day, Ed came in with the boys after a walk. Everyone seemed upset. When I inquired, Ed explained that they were kicked off that beloved playground by a neighbor. I was shocked - I'd taken the kids to that park many times without incident. I knew a lot of the moms and kids who played there and we were always made to feel welcome. When I expressed my outrage, Ed just mumbled something like..."it wasn't the first time this has happened." I was welcomed to this private space with my kids, Ed was yelled at and told to leave with these same kids. Repeatedly.

Oh...there are so many more stories to tell. The Greek laundromat owner in our Queens neighborhood who screamed at Ed for every ridiculous infraction whenever he went in to do our laundry (and I thought for the longest time he was just trying to get out of helping with the laundry). The time when I had to go rent an apartment without Ed because our friends who were leaving us the apartment sheepishly admitted they were afraid the owner may not rent to us if Ed was there. (Yes, in retrospect, we should have never played that game, but the rent was SO good and the location was SO great...a New Yorker's dream).

The funny thing about Ed is that he never cries foul. He never once pointed out what became fairly obvious - like most other POC in this country, he was being singled out for the color of his skin, so I came to these realizations on my own. Perhaps more slowly than most.

There was this process of realization for me with every incident that went something like this:

1) my oblivious denial of racism in the world, or at least in *my* world

*racist act occurs*

2) initial confusion and disbelief

3) realization and stark anger

This process has been condensed for me now to - initial confusion and then quick anger. I can sniff it out pretty fast now.

It's to the point now where I often do things, just because I know I can get away with it, to remind myself of my own privilege. Nothing illegal or really even wrong, just dumb stuff, like going into a nice restaurant that I'm not eating at just to use the restroom. And then as I'm walking through the restaurant, I think...this is about where Ed would get stopped.

I just can't believe there are white people in America who deny the existence of the privilege the color of their skin affords them. But then, I can. Because I was one of them. It all comes back to being willing to understand the experience of POC in this country. Reaching out, listening to them, and believing them.

You Need A Mexican!

I was frantically weeding my side yard, which faces the street (because: THE MOVE), when a man with the same shade of skin as Ed, somewhere in his late twenties or early thirties, missing a couple of teeth and with a young child in each hand, approached me and pulled out a business card and said with a warm smile,

"You need a Mexican for that!"

I looked at him and then his card, and then up at my house, where somewhere within resided a Mexican. My Mexican. Likely on his laptop doing work, but not the work that is stereotypically ascribed to his race.

And all I could do was nod and agree. And laugh.

Bar Graph-ing Our Move

I made a representational bar graph of our family in the middle of packing and getting our house ready to sell, because..... because..... it seemed productive at the time. 

Last Blog Standing

When I mentioned to a casual friend that I still keep a personal blog, her reply was, "Wow, so 2006!"

It was a little rude of her to say, but she is correct that the mommy blog era is no longer. But just like cargo pants and Gilmore Girl reruns, also 2006 favorites, the blog still works for me.

If I'm in a busy phase of life (kind of like now- we're selling our Seattle house, preparing to move to Portland, and ending the school year), the blog is a quick way to guarantee I'll get at least a little writing done. And it is still nice to have a place to record family milestones as well as the quirky everyday happenings of Familia Guzman.

I have no idea who, if anyone, is still reading. But for some reason, it is more satisfying for me to publish on a blog rather than keep a traditional journal.

And I'm so glad I started this blog. Even if I was bending to mommy peer pressure to go along with a current trend (but I don't think I was as I never bought a maxi dress, I just like to write), it has already become a treasure trove of family memories. It is so fun to look back at earlier posts to see what the kids were doing, what they were like, what things about them drove me batty! One of the things I love to do most with Asher right now is go back and read old posts about him. And he loves it, too! He can't believe he was such a silly little kid! I can't believe he's almost grown.

It is interesting to see how the blog has evolved through the years. The first couple of years of entries are sugary and cute. I think I was subconsciously copying the style of other mommy blogs at that time, which leaned towards the idyllic.

At some point, I tired of that style and started getting real about our family life. These posts are my favorite.

These days, I'm a little stuck for material, as Asher does not want me writing too much about him, and I want to respect his privacy. I also feel like I should be mindful of Noé's privacy, as he cannot give explicit consent. But I also think autism families need to tell their stories. Well, all families need to tell their stories. It's a hard balance.

Perhaps, we need to get a dog to generate more blog material.

But I'll keep writing my 2006 mommy blog. Even if it is only about our imaginary dog.

Visiting my Ex-Boyfriend: New York City

New York City is the ex-boyfriend that I can't quite leave for good. I occasionally go back for a few days of fun and excitement, and then quickly realize why it didn't work out in the first place.

Asher and I had a great trip to the city this past week. But by the final day of the trip, I was done waiting underground in stinky dark stations for trains that could never arrive on time. Tired of constantly swimming through the waves of people on the street, not to mention swimming through the actual monsoon-like rain that hit the city on the final day of our trip. Tired of people constantly selling me things on the street and putting paper advertisements in my hand. Tired of waiting in long lines for everything. Tired and ready to come back to my real husband and the relative calm that is Seattle.

But let's back up to the days before the affair went bad.

It was so fun to see the city through Asher's eyes. We moved to DC when Asher was a toddler, and we've returned a couple of times for visits, but he has very few memories of the city. Once he was finally out of bed, we were out exploring until late each day. He couldn't seem to get enough of the city. He loved its rhythm, its shiny attractions, and the freedom the subway system provided to get you anywhere you wanted to go. "If we lived here, I could go anywhere," he exclaimed with fresh realization. "Even Coney Island!"

Even Coney Island.

Asher said his city favorites were the views from the Staten Island Ferry and Highline Park. I could see his future city planner brain in high gear the entire trip. We were on the 7 one morning, headed into the city, and a mariachi band stepped into our train and started playing for the commuters. Not a single person looked up except Asher, with his wide-eyed wonder. He didn't know they were supposed to be an annoyance. He dug out a dollar from his velcro Nike wallet and put it in the accordion player's open hat as they passed our seats.

We stayed in an AirBnB in Sunnyside, our first Queens neighborhood. I was lukewarm on the neighborhood when we lived there, but loved our AirBnB apartment, a renovated flat in Sunnyside Gardens, and I was in awe of all the new bike lanes that criss-crossed the neighborhood and the hipster coffee shops. There was even a dog park in the middle of the vast cement jungle otherwise known as Skillman Park!

More than the shiny attractions, the part of New York that will always have my heart is the coexistence of diverse communities. Walking back to our AirBnB from the subway station at sundown on a Friday night, I spotted a family in their home observing Shabbat over flickering candlelight and a large meal. In a park in Chinatown, we watched groups of elderly Chinese, segregated by gender, gambling on card games and playing Xiangqi on cement picnic tables. They looked just kids in a school yard, except with wrinkles. Back at Skillman Park, we saw Ecuadorians playing soccer in a light rain on a concrete playfield with their flag draped over a goal.

New York City is like a patchwork quilt with fat fabric quarters from each part of the world that, arranged together, make a beautiful finished blanket. The blanket might be frayed at the edges and you will find a lot of flaws in the construction, but the imperfections create a uniquely beautiful work.

Noé at 15

Noé brings a lot of joy and laughs (and some frustration as well) to our family.

Just this week:

I told Noé he could have an ice cream bar as an after school treat. He pulled out the bar from the freezer and quickly disappeared, leaving the wrapper on the kitchen counter. I found him sitting on the couch with his ice cream bar and his iPad. I asked him to throw away the wrapper. He laid his iPad and ice cream bar on our white couch to throw away the wrapper.

"NOT ON THE COUCH!" I shouted. He promptly picked up the iPad and left the ice cream bar on the couch cushion.

He is also obsessed with my slippers. Whenever I look for them, I inevitably find them on Noé's 15 year old feet. The other morning, he REALLY wanted to wear them to school. I thought we were going to have a showdown of wills. Then I told him, "Noé, it's just not cool for an eighth grader to wear his mom's slippers to school."

He looked at them longingly, then took them off and carefully lined them up next to the other shoes before putting on his sneakers.

Ode to the RadWagon

One of my biggest pleasures in life is riding my bike, or really any bike. When we moved to Seattle, I hoped to make it a full family affair. Maybe we could even sell our car and use our bicycles as our primary mode of transportation.

That fantasy hasn't played out, but we're getting closer to a car-free life, thanks to our RadWagon.

Probably the biggest obstacle to our car-free utopia was Noé's inability to ride a bike independently. He can balance himself on a bike and ride in an open area, but I can't trust him to ride the highly-trafficked streets of Seattle. Maybe we'll get there eventually, but not today.

Soon after our move to Seattle, I was itching to ride the city with my boys. I looked at SO many cargo bike options. They were SO expensive. And SO heavy to ride up and down the hills of Seattle. Meanwhile, Noé just kept growing and getting heavier. I *almost* purchased a tandem bike for him last spring, but changed my mind. I know Noé pretty darn well. I knew he wouldn't pedal if he knew I was pedaling, too. I could picture myself trying to haul the bike, with Noé still sitting on it, up some of Seattle's cliff-like hills. Seattle Hill Hell. I knew it would become miserable and that we would eventually stop riding the bike altogether.

Later last spring, I started hearing some buzz about Rad Power Bikes. I did some research and I was impressed with the RadWagon. It was everything I wanted and needed in a bike for Noé and I. The cargo long-tail structure would be a comfortable ride for both of us. The electric assist would get us up those nasty hills. The burnt orange color was bright and badass. It was in our bike budget...far and away the best priced electric-assist cargo bike on the market. They are based out of Seattle, so I set up an appointment at their Ballard shop for a test ride in early June, but they pretty much already had me at "electric-assist-cargo-bike-under-2g."

Nine months and 500+ miles later, my love only grows for my RadWagon. Noé and I have had so many great city rides together, around the lakes of Seattle, along the Burke-Gilman trail that winds around the city, to and from summer daycamp.  He loves riding with me and often requests to do so on his iPad communication device. Many days, I'll ride him to school, even though the school is only a seven-minute walk from our house. It is a great start to the morning. Yesterday, we were riding around the lake on a sunny but cool, early-spring day and Noé kept standing up on the bike. I looked back at him and he looked so free and happy. Kind of like that famous Titantic movie scene where Jack stands on the mast of the ship. I laughed, and then I told him to sit down.

I follow the owner of Rad Power Bikes, Mike Radenbaugh, on my Instagram. He is the ultimate bachelor entrepreneur and adventure-seeker dude. I will see Instagram stories of him out on Lake Union on an SUP in the middle of winter at 6am. He seems like a good guy, but I think it's pretty safe to say that he didn't have disabled kids and their bike-crazy moms in mind when he rolled out the Rad Wagon. Much like Steve Jobs had no idea how much his Apple technologies and devices would change the lives of kids with nonverbal autism.

But I'm happy to benefit from both of their genius.

The Things We Say and Like

These are the results of a silly FaceBook game that we played together before bed last week, but did not want to actually post on Facebook. I thought it might be fun to look back on one day in the future. I found it interesting how sarcastic we were to each other when answering questions as we generally aren't sarcastic in our interactions. I guess we were trying to come up with funny responses. Note: Noé did not participate because he was already in bed ...miracle... /sarcasm!

My commentary is in [  ]s:

What is something JEN says a lot?

Asher: Asher, can you come over here for a second?

Ed: Talk to your father

What is something that ED says a lot?

Jen: Touché

A: Is water wet? Is the pope Catholic?

What is something that ASHER says a lot?

J: Do I have to go to school tomorrow?

E: Reasons

What makes JEN happy?

E: I don't know  [such a funny guy]

A: Chocolate  [truth]

What makes ED happy?

J: When the Dodgers win

A: Your phone  [ouch!]

What makes ASHER happy?

E: Your phone

J: When it's time for "Amazing Race"

What makes JEN sad?

E: Life  [such a funny guy]

A: our president  [truth]

What makes ED sad?

J: When the Dodgers or Stanford lose anything

A: When the Dodgers lost the world series

What makes ASHER sad?

E: School (except for Spanish and PE and Jazz Band)

J:  When the weekend is over

What is JEN's favorite thing to do?

E: Go on a bike ride

A:  Bike    [for sure]

What is ASHER's favorite thing to do?

E: Text with friends

J:  Play the piano

What is ED's favorite thing to do?

A: Watching sports and listening to the record player

J:  Going on hikes

What is JEN's favorite food?

A: Egg salad [huh?]

E: Chocolate

What is ED's favorite food?

J: Seafood

E: Pizza

What is ASHER's favorite food?

E: Bacon and eggs [thank you, Parks and Rec]

J:  Seafood

What is JEN's favorite drink?

A: You drink tea a lot

E: Chai

What is ED's favorite drink?

J: ROOOOOOOOOT BEEEEEEEERRRR

A: oh my gosh yeah...root beer

What is ASHER's favorite drink?

E: Root beer

J:  Hot chocolate

If JEN could go anywhere, where would it be?

A: Portland

E: Chile   [hmm...I've already LIVED in both those places...]

If ED could go anywhere, where would it be?

J: London

A: Dodgers stadium [he would like to live there, actually]

If ASHER could go anywhere, where would it be?

E: Abuelos house [?]

J: Around the world with "The Amazing Race"

Do you think you could live without JEN?

A: A big fat no

E: no  [said very casually]

Do you think you could live without ED?

J: My heart would not go on 

A: NO

Do you think you could live without ASHER?

E: Absolutely not

J: Not a chance, you're our sun/son

How does JEN bother you?

A: When you don't finish your sentence [I do that...]

E: I plead the fifth 

How does ED bother you?

J: When you walk too fast, when you snore all night

A: When you say the dab is not dead

How does ASHER bother you?

E: When you don't listen to me

J: When we have to nag you to get your work done

What is JEN's favorite TV show?

A: Parks and Rec [a good one...but nope!]

E: Mad Men

What is ED's favorite TV show?

A: Mad Men

J: Friday Night Lights

What is ASHER's favorite TV show?

E: Stranger Things

J: Stranger Things

What is JEN's favorite music to listen to?

A: Christmas music or Despacito [no and NO!]

E: Ricky Martin [....and nope]

What is ED's favorite music to listen to?

J: Jazz and Beatles

A: Miles Davis 

What is ASHER's favorite music to listen to?

E: Pirates of the Caribbean theme

J: Anything with a piano tutorial

What is JEN's favorite color?

A: Green

E: Green

What is ED's favorite color?

J: Pink 

A: Dodgers blue

What is ASHER's favorite color?

E: Red

J: Red and orange

A Goodbye Letter to Seattle

Dear Seattle,

I will miss your emerald skyline, your parks that make the city feel like a giant playground. I will miss your ubiquitous water that is like liquid Prozac on my nerves. I will miss Rainier keeping a distant but studious eye over you and your soaring housing prices.

I will miss trying to order a Bitchwich at Biscuit Bitch with a straight face, fancy brunch at Portage Bay, and I will also miss scrounging the inner linings of my car for spare change to buy a Dicks Burger.

I will miss your magical summer evenings: splashing in the International Fountain with my boys and random nude adults on quaaludes, and bike rides along the Burke-Gilman trail - can we make it to Lake Washington tonight, kids?

I will miss ALL the salmon. Fresh salmon lofted between fishmongers at Pike Place Market, salmon grilled on cedar planks, salmon murals, salmon-shaped slides on your playgrounds. I will miss going to Ballard Locks with my Mexican father-in-law and trying to explain that no, you cannot just grab the salmon off the ladders and take them home to grill because they are "protected" - and that word getting completely lost in translation.

I will miss M's games and guessing if the giant roof will be open or closed at Safeco during the rainy drizzle. I will miss having to explain to my kid why people refer to the Downtown Biospheres as "Bezos Balls."

I will miss worrying that my pink-haired techy millennial neighbors will starve if UberEats ever goes under. And I will miss other neighbors with big houses who leave their Christmas lights up through the winter because the darkness at 4PM on a January afternoon can feel unbearable. I will miss giggling at the irony of your wealthy all-white neighborhoods dotted with Black Lives Matters signs, but I will also miss how those same neighbors cradled and reaffirmed our mixed family post-election.

I might even miss the jaw-dropping, white-knuckled bus ride that is the E-line a little bit.

No. No, I won't.

But most of all, I will miss you, Green Lake. Beautiful Green Lake, you have been the backdrop to my boys' childhoods. We have swung in your trees, swam in your water, boated to the epic and mysterious Duck Island. We have circled your path while trying to make sense of our own lives and the world we live in. And we always leave your shores feeling a little bit better.

Middle Aged and Rage-y

In preparation for our New Years Eve and the upcoming work and school week, I food shopped at my neighborhood Fred Meyers this afternoon and unknowingly ended up in the millennial check out line.

The female checker and the shopper in front of me both had recently turned 21. I know this because they were yucking it up while the checker rang up her groceries.

"Do you like that hard cider? It looks like beer to me. What are you doing tonight to celebrate?" Yuck-ity yuck yuck yuck.

At one point they were talking back and forth so effortlessly, I figured they had to know each other. But they didn't.

Checker finished ringing up Shopper. They said their final goodbyes. And then Checker turned to me.

Checker: "Hello, ma'am."

Me: "Hi, how's your day going so far?"

Checker: "Fine, thanks."

< Silence >

She rang up my groceries and I could only think, "Dang! I'm even wearing my on-trend jeans with holes and I still look like an old lady to her!"

I find myself vascillating between wanting to be acknowledged by millennials and being completely annoyed by them.

There is a pink-haired millennial who rents a place behind our townhouse. I run into him most mornings as I walk Noé to school. He circles with his cell phone in hand, looking ridiculously lost as he wanders his own street in pajama bottoms. It took me about a week to figure out what the hell he was doing. Finally, one day I saw him approach a car that had pulled up. The guy in the car handed him a McDonalds bag and then drove off. He had UberEats delivering him a freaking Egg McMuffin every morning!

As a penny-pinching, middle-aged rage-y mom, this is wrong to me on so many levels.

First off, I can count *five* breakfast places, all of which serve some type of egg sandwich, within a three-block radius of our street. This includes a fast food place that has an almost identical breakfast menu to McDonalds. His legs looked perfectly fine as he wandered down the street looking for his Uber delivery. And if he doesn't want to walk, heaven knows there are plenty of Lime Bikes lying around at any given time on our street.

Second, how much does it cost to get an egg McMuffin delivered to your house? I didn't find out, but the Seattle urban markup must be pretty steep. The closest McDonalds to our neighborhood is about three miles away. Plus delivery and tip, are you kidding? Whatever coding job he has better be pretty dang lucrative.

Third, even if that little pink squirt makes more money than me (which is often the case when you live just a couple miles away from Amazonia and all the other neighborhood tech companies), does he not understand the law of compound interest? I may just tape this article with accompanying charts to his front door. Those little egg sandwiches may only cost him twenty dollars each today, but they will cost him hundreds of dollars a pop by the time he wants to retire. I have another millennial co-worker who has made a really high salary since he graduated college, but ten years later, hasn't saved or invested a cent because he "doesn't trust the stock market." These super smart kids are just incredibly dumb sometimes.

I know some really impressive millennials. We host a Seattle Times intern in our home each summer. Each has been more mature, more gracious, more accomplished than the next. And I'm also quite positive that the generation before me found me just as irritating as I find some of these younger kids. From my vantage point - this generation is the pulse of the country and they certainly have the most energy, and you want to endear yourself to them. But they don't have enough life experience to command respect. It's just a strange place when you realize you are no longer the Up-and-Comer but rather the Judger from Above - The Middle-Aged Rager.