the 1%

A week ago, a friend I haven't seen for years invited me to a fundraiser hosted by her father-in-law, a prominent (and very successful) venture capitalist in Seattle. Her in-law's family are also affected by the same diagnosis we are. At the last minute, my friend's husband could not attend but they'd purchased tickets ($500 each) and had an extra.

I accepted immediately because I had not seen her for so long. After she sent me the description of the event, I realized how small it was. I started to get very nervous because I am not accustomed to hanging out with the 1%. So I called my sister (that's part of her job). She gave me some great tips then offered to send me some clothes as I had nothing that fit the dress code of "summer chic." I felt better knowing that at least I'd fit in superficially.

Turns out, I did not need the $10,000 dress. The party was small. But the guests were wearing Seattle summer chic which means "comfortable" What bonded me to them was not my clothes but the challenges our children face. Parenting a child with a disability must be humbling for everyone regardless of income. I am so grateful to the physicians and staff from Seattle Children's who are doing such amazing work, and equally grateful to these wildly wealthy people who are so committed to funding that work. Their children are grown so my child is the beneficiary. I promised my friend I wouldn't hug anyone but I expressed my sincere gratitude to many.

I was worried about spilling something on this dress.

A whale of a good time

This week, we visited Tofino, one of the few towns on the west coast of Vancouver Island. Unfortunately, I seem to have lost most of the pictures I took when we were there. Fortunately, I posted a few on Instagram (username sojama). Also, there is the internet which has many better pictures of the area than I could have taken.

We had a really great time. We stayed on Cox Bay at the Pacific Sands Resort

a lovely surfing beach in the back yard of our room. We all surfed. Sonia even managed to stand up.

Every day we ate at this taco truck (Tacofino) for lunch. It's famous.

Almost the exact view from our room

One day, we took a tour through Ocean Outfitters to hot springs about 20 miles north of Tofino. The springs are among islands that are inhabited by native americans who have been in the area for thousands of years. Tofino feels remote but these islands feel like the edge of the world.

imagine us with a lot more people. the kids did lots of rock climbing

We hiked 1.2 miles on this path to the hotsprings.

One of the many highlights of our day at the hot springs was our return journey. Our guide was very knowledgable about the area. We learned a lot about its history and how locals are trying to preserve the area. Tofino's road is only about 30 years old. It took us two days to get there from Seattle. However, it becomes more popular every year and locales want to make sure they preserve what makes the area great. So, back to our tour. We traveled along the pacific ocean side of the coast and our guide spotted a gray whale. This enormous animal surfaced many times very near our boat. It was phenomenal.

It rained our last day. Really rained. We headed to Ucluelet to see the small aquarium there. It's open only three months a year. It's the only aquarium in the world that releases all the sea life. It's the only picture I have from the trip:

On Friday, we returned to Victoria and took the black ball ferry to Port Angeles on Saturday morning. On the way to Port Angeles, we saw many whales and one of them did this:

Everyone on the boat was mesmerized. I have never seen anything like it in real life. I did not take any pictures though. I knew I'd miss it if I searched for my camera. 

We are very grateful for our trip. That was our big vacation for the summer. We stopped at my mom's house on Saturday to break up the trip.

My mom and stepfather took the kids out on the boat to take the crab out of their pots. The kids really enjoy this activity. 

We headed out this morning to return home. As we started to cross the Hood Canal bridge, it was closed. After about 45 minutes, we learned it was, in fact, broken. That was disappointing. We had to drive all the way to Olympia then up to Seattle... so it 2 hour journey became 5. The kids took it in stride and we made the best of it. It's not an adventure without challenge.

Here's a picture from local media. 

Goin back to Cali

This week, we visited Ryan's parents for the first time in 7 years. The weather has been perfect. The kids have really enjoyed all the grandparent attention. Ryan's dad is an amateur photographer and he took many great shots of the kids. There were also shots of me but I am in a wetsuit. No further explanation is necessary.

Blog! It's been so long.

It's been two adventure-filled months. The following happened in this order: yoga retreat at the Sleeping Lady, trip to NYC with mom, sister, aunt and cousin to celebrate mom's birthday, weekend adventure in Mazama where we stayed at the the Rolling Huts, trip to LA with a dear friend, trip to the grandparents' home on the Olympic peninsula, and current trip to Ryan's homeland on the central coast of California. We head to Vancouver Island soon to hang out in Tofino, the Pipeline/North Shore of Canada.

In the middle of all that I volunteered a lot on various school events, attended several local political events around school funding (or rather, how there is nearly none) and launched a big back-end overhaul of my website. A variety of horrible-beyond-measure events occurred nationally and were featured on every media outlet every minute of the day. Many small amazing things happened but were not publicized by anyone.

We continue to be grateful for our lives and health. We have fun when we can. That's about it.

outside the Sleeping Lady

At the Hotel Giraffe in NYC celebrating mom's birthday

Central park / mid-town tour

Hike in Mazama

Katie at fancy LA coffee shop

Science Center for the Lego Art exhibit

Spotlight

When I was pregnant with Jack and working in an ER, a fellow tech (aspiring firefighter) told me the following story:  When he was a kid, his mom told him and his sister that if anyone ever molested them, they needed to tell her. She would then kill the person who hurt them. She would go to jail but that was ok because what really mattered is that her children were safe from the person who hurt them.

This is not what people advise telling their children in regard to pedophiles. However, for whatever reason, this guy always felt safe knowing his mother would kill anyone who hurt him in that way.

I had to spend two hours of my morning attending a class called 'Safeguarding God's children' in order to volunteer with kids within the Episcopal church. I got to learn all the ways that pedophiles identify victims and perpetrate crimes. I watched videos where actual convicted pedophiles described how they operated.

I am grateful for increased awareness around this issue. I also struggle with an enormous amount of rage after spending two hours with this "problem." There is a place deep in my brain that was programmed millions of years ago when my ancestors were lizards. I am programmed to protect my children (all children) at the expense of my own life and well-being. I cannot overcome this programming. So I am think I am telling the truth when I say that if killing a pedophile were legal, I could do it. I think most mothers could do it in fact.

Whistler!

As I have written before, we are a family that skies dammit. Perhaps because of their privilege and my attitude, the kids complain about skiing at one of the world's most amazing ski resorts. By day 2 though, they are happy. Exercise and adventure makes them happy. They don't have good form but they point their skis down the mountain and fly down. It's exhilarating.

This spring break, we met up with two other kids in Sonia's class who have been skiing for years. All the families skied together. I love skiing because we are active and outside surrounded by beauty beyond measure. I value experience over any possession so I just don't care about the cost (although the Canadian exchange rate is amazing right now. Go oil supply glut).

randsom sonia selfie

No certainty

I recently read an article called 13 Questions to Ask Before Getting Married. It really bothered me. Ryan and I have been together almost 17 years. We asked no questions before getting married. We already owned a home and had been together for 5 years before getting married. My decision to get married was based on the fact that I didn't see myself ever breaking up with Ryan, so why not get married? Here was our conversation about children:

Me: Ryan, I am pregnant.
Ryan: Wow.

And here we are. I don't know how the story ends.

Similarly, 5 years ago, I read A Blueprint for a Woman's Life, and it irritated me for the same reason. There is no script for living the right life. People learn through experience and making mistakes. It's the only way. I can look back and see I have done some things that don't seem very smart now, but I also see that I would not be where I am today if I had not done those things. Those "mistakes" or "regrets" delivered me to the life I have now (and I am very grateful for that life).

I hope I can convey to my kids that anyone who suggests that there is some right way to live your life is trying to sell something.*

*Unless the article is about the many reasons you should not become a drug addict or alcoholic. Then you, my children, should definitely believe that.

Moving on

I have moved on from my sadness about the diagnosis. There is much to be grateful for and self-pity is only enjoyable for a short time. Then it's just tiresome. I am now reading books by Temple Grandin. She is a very inspirational woman who writes a lot for parents like me and kids like Jack. She would certainly not understand or indulge in anything but moving forward with compassion.

I also wonder how much this needs to be part of my identity. It's a little odd that I would take on a label as well. Pondering that one...

Skiing!

I am sure I have written about the fact that learning to ski is mandatory in our family. I did not grow up skiing and therefore, I will never be a great skier. Even though I am not that good, I love to ski. It is a great sport for a northwest family (the obvious downside is the cost but rational spending be damned! who needs college?) . We can be outside when it's otherwise cold and miserable. We are exercising, taking risks, learning and mostly having fun.

We spent a week in Sun Peaks BC in January with some family friends of ours. The kids really improved their skiing. We loved being outside in Canada (great views! great country! great people! great exchange rate!). We are going to Whistler to ski in April. I am living my dream. However, I have not told the kids. If we were living their dream, we'd be heading to the sun.

Our friends. So fun to have them with us.

Us. Jack as ninja skier

Canada!

Mom's Pity Party

This is a blog about my experience as a parent. I realize that there is a point where I probably can't make my feelings public. Maybe I am already there. Perhaps I will password protect the blog so my kids and their community will never read it. I don't think this blog is any of their business yet it's public and really no one's business except my own. They might argue that I am talking about their lives so its content belongs to them. I don't know the answer to all that yet.

Today, we received a diagnosis. They are common these days so it might not sound like a big deal but it feels like a big deal. I feel sad. I feel like I finally have a label for all this difficulty and churn and it feels heavy. If I told you about it in more detail you would say 'oh I know lots of people with that who live productive lives' or 'it could be worse' or 'you are lucky that ... fill in the blank with all the ways I am lucky' All of these things are true.

But here is what is also true: my kid has to deal with more hardship than his typical peers. He is harder to parent than a typical child. So for a moment or maybe a few hours, I just want to feel sorry for myself. It sucks.

Goodbye for Now, Terry

My Dad's wife passed away in November. Her family had put her in a nursing home 2 years ago. She quickly progressed through more severe stages of dementia. We were never close to her children but felt fortunate they called my brother to tell us about her death. Her family had decided they would not hold a service for Terry but my siblings and I needed to mark the occasion and somehow, say goodbye. We invited my dad and Terry's friends to a brunch near their home. Their friends are all in their 80's and even one woman who is 90.

We reminisced, laughed, cried and chatted about other things as well: the legalization of marijuana for example. One of my dad's friends and fellow right winger ranted. He said he loved talking politics with my dad and I could understand why -- they were of the same rush limbaugh-influenced mind.

My dad's best friend mentioned he has lost both of his best friends. They are gone now, and he feels alone without them. It's hard to look forward to that time of life. I felt the group was fairly subdued. I imagine they are tired of such memorials. Loss, loss and more loss. It's hard.

Post-memorial. Hermanos gather.

It's the most miserable time of the year!

December is always hard. It rained a lot and that didn't help. I think the anticipation of the Christmas acquisition event is too much for the kids to bear. Jack was especially cranky and angry. Sonia whined a lot.  Ryan had quite a few days off, and we, sadly, spent a few just hanging around the house with no other idea of what to do, I guess. Every time the kids would start fighting or complaining (almost every 5 minutes it seemed), Ryan and I would start singing, "it's the most miserable time of the year!" It made Sonia laugh and Jack generally got angrier. I told Ryan I would like to go to Israel some December since it's not a holiday there.

We had some friends over for dessert and drinks on Christmas afternoon. The kids watched Star Wars on a projector we borrowed. That was fun.

Our vacation in 2 minutes

Los Estados Unidos en Mexico

We are in Sayulita, a small town north of Puerto Vallarta.  Here is the view from our mostly-outdoor home:

It's really wonderful that we have this view because many of us have been spending a lot of time here. Ryan had a surfing accident of sorts. When exiting a wave, he was slammed into the sand and really can't move much. He cannot swim. He cannot sneeze. He cannot move his upper body without a great deal of discomfort.  Last night, Jack woke up vomiting and did that every hour until I went to a little clinic here and got him anti-nausea medicine. He now has a fever. 

A bummer, since it's not the ideal way to spend vacation but it's still a lovely vacation. We are moving at a snail's pace. Sonia and I hung out at the beach and at the home of our friends who are staying about 10 minutes walk from our home. 

A few nights this week, we've hired two women to cook for us at our friends' home. The home also has a pool so we lounge about there a lot too.

The weather is warm. There is lots of sun. We are happy to be here.

9 years!

Jack is 9. We have been parents for 9 years. It's hard to believe we existed before that. Who were those people? Too bad I didn't keep a blog then. This blog is also 9 years old. 9! The transformation of becoming a parent is impossible to overstate or accurately state. My focus and identity are completely different now. That may also be due to aging and experiencing life.

In any case, Jack is 9. He talks most about Minecraft. He enjoys swimming and our weekly trip to circus school. He reads most of the time he is at home. Our biggest parenting challenge is control over the screens in Jack's life. He seems ambivalent about school.. or maybe I am just ambivalent about his school experience as I experience it. Hard to separate my perceptions from my perceptions of his perceptions.

We are in Mexico right now... We started our vacation at a bland but kid-friendly all-inclusive resort outside of Puerto Vallarta. I wouldn't come back but it's been an easy three days. Jack was thrilled to spend his birthday on an airplane (in front of a screen) and then in the ocean and swimming pool later. I am grateful to be with him and our little family.

Jack declined to be in this photo:

Halloween

Time passes so quickly. It's darker now and on Saturday, we will celebrate Halloween. Surreal. We carved pumpkins with our dear friend Heather and her family on Sunday.

We also visited Heather's cousin (and our former nanny) Gen. She has a child of her own now and a really cool mini John Deere tractor that Jack loved. I think he would have liked living on a farm.

Manzanita

Ryan loves surfing so we are teaching the kids to surf. Growing up in the Northwest, this means wet suits. Getting a wetsuit on a child is like getting a wet suit on a monkey. I was very tempted to swear. Besides that inconvenience, going to the beach with the kids is great fun. We visited the amazing Cape Lookout State Park. We had to hike two miles down a steep hill with all of our gear (and up of course). The kids did really well. I was very surprised. The love surfing with Dad.

We also visited Short Sands - a lovely beach between Manzanita and Cannon Beach Oregon. We had great weather too. It was a memorable vacation.

Cape Lookout State Park

Before the big hike down

Haystack Rock

Short Sands Beach - Photo by Jack

Dad and daughter

Transitions

My kids are now both in elementary school. They are in the same place for 6 consecutive hours. What do I do with all my time, you ask? Well. I am transitioning. I had planned to use my time to work on my software. I do that. But I work alone and now I can work for 5 hour stretches. I get bored and a bit lonely. I need to figure out how to structure my time so I can pay attention. Maybe I will schedule shorter stretches of work outside my house?

That would be a better idea than what I did this past week. This week, I downloaded the first series of Outlander and watched 15 hours of TV in three days. I have not watched 15 hours of TV in the last 9 years combined. I was just looking at an Outlander fan website. Soon, I will gain 30 pounds, have an outdated hair style, start knitting and posting favorite cat pictures on Pinterest.

God help me.

Parenting

The longer I parent, the less I think it has any effect on the parented. My kids are so different from me. I am sure my habits influence them. I know the environment does too. However, I don't think anything I say or insist on guides them except maybe to inspire them to rebellion.

Here is a video of Sonia playing soccer. She is a very competitive and aggressive little player. At this stage of play, the faster, tougher girls just get more time with the ball. Sonia cried yesterday when her team lost. She is motivated to practice and be a good player. I have no part in this. Neither does Ryan. She is just this way. Jack, meanwhile, laid on the soccer field during scrimmage when Ryan signed him up for a league. He has no interest in competition but don't get him started on airplanes or dinosaurs or Minecraft or the solar system.

It seems the main job of a parent is to keep the children fed and step out of their way as you can't control much anyway.

Happy 6th birthday Sonia!

Sonia's birthday was all celebration. Aunt Katie surprised her for a visit. We had ten girls over for tea. We painted bird houses, ate small sandwiches, sipped tea, ate cake, had a dance party and pillow fight, watched a show then destroyed a pinata. Great fun had by all.

My mom and stepfather came for a spaghetti dinner. The adults ate while Sonia and Jack played with the neighbors and some friends that hung out while their parents worked. The kids ate dinner then more dessert. The kids get to choose whatever they want to eat all day on their birthday so a mountain of sugar was consumed.