10 years!

Ten years seems like very little time when you are looking back on it. I have been a parent for ten years. Jack has been alive for ten years. More than anyone I know, Jack has had the greatest impact on my identity (other than my parents but I did not watch that process). Nothing was the same after I met him. I have been challenged more than I thought possible in every possible way: physically, spiritually, monetarily, emotionally, existentially.... I cannot think of other ways to be challenged. I don't look at anything as I did before. Who was I? Who knows? I cannot remember.

On Jack's birthday, Jack had been sick with a stomach virus for almost 2 weeks. He missed 10 days of school. He's always had a sensitive stomach but this was extreme even for him. The election happened. We visited the doctor many times since I didn't see how it could be a virus. He is still occasionally vomiting if he eats too much dairy (or so it seems, I really have no idea why so we'll be visiting the doctor again soon).

We celebrated yesterday with a few friend at the UW HUB.. a very fun place for ten year old boys! The kids played video games, then ate pizza, took the bus there and back (adventure!) and ate cake and opened presents. Fun was had by all, including me. Who knew little boys were so fun.

Jack says his favorite thing was playing video games. He reports that he likes minecraft, books and building legos. He expresses frustration that I am asking these questions. He wants me to find a lost lego.

Onward!

no words

I had to tell the kids last night that Trump won. Jack cried. Sonia became quite anxious. I said it would be ok. We'd stick together. Other than that, I don't know what to say. Jack was worried he will kill Muslims. I said that wouldn't happen.

However, obviously, I have no idea what will happen. I can only guess as the potential for devastation is vast. I have used Harry Potter to explain a lot of difficult things to the kids. I don't think it will work this time. If I tell them Voldemort and his deatheaters are in power that won't be helpful to them. I don't even know if that's true yet anyway. All I can do is hope it is not true or that Dumbledore is out there to help us.

Their sense of irony is not developed enough for despair.com. And on days like today, this feels a little too true to be funny.

Family photos

We do it once every 5 years!

The family meeting

Based on the advice of a few people we admire, we started having a family meeting once a week. It generally lasts 5-10 minutes as our kids don't have a lot of patience for it. Mainly, we talk about the schedule for the week. Ryan generally has no idea what the schedule is and Jack always needs reminders so we also post the schedule.

Then everyone gets a chance to talk. Tonight, I was the only one with a topic. It was "you are responsible for your anger. If you are an adult, you are responsible for your anger 100% of the time. No exceptions. Ryan was frustrated with Sonia yesterday and did something I found objectionable. When I protested, he blamed Sonia. This is never ok. Adults should never blame children for their poor behavior. Ever. I also see this blame game everywhere among adults:   in our school there's a teacher who blame students for her incessant yelling. Then there are the people who blame their boss or wife or the sales associate or the postal carrier or the person driving the speed limit when they're in a hurry (ad infinitum) for their unskillful and crappy behavior.

This blame game will not happen in my house.

That was the end of the meeting.

Happy Birthday to Sonia

Sonia turns 7 today.

We had a big birthday party for her and her buddies on Saturday. Then another party with family on Sunday. Then another small celebration at school with donuts. Then dinner out tonight. My kids are lavishly celebrated ( I can't find the right accent key for the word feted).

Sonia is an insightful person. She seems to know what everyone is thinking. She is driven and tenacious. She seems like a small adult... I can see some of the ways she is influenced by us: she seems open minded. Then I can see how she is influenced by the culture: she loves to acquire.

We threw a party at home mainly to avoid the expense of having the party at an outside venue. I wanted the event to be simple. I planned a treasure hunt with items we bought at a Japanese dollar store.  I hid things in the yards of our neighbors. One of our neighbors was having a garage sale. I told her about the party. She has children around the same age as mine but they attend private school so we don't know them well. She mentioned that her older son requested a party with no gifts. She then added that he also doesn't like cake or cookies. As I was filled with jealously and feelings of inadequacy, I had to laugh. The dad in this family recently took his company public and the rumor is that they are now worth half a billion dollars. They got to live abroad for a year. They are also lovely grounded people who attended ivy league schools but could not be nicer. And until the mom told me her son refused gifts, I have never felt an ounce of jealousy for them.

The pressures of parenting are profound, and paradoxically, with Sonia in my life, I can laugh more about them. She is a joy.

Summer highlights

The summer really flew by. I worked a bit more so time feels more chaotic when I do that. It was fun. We had some good weather and fun adventures.

The first week of August, the kids did the Museum of Flight camp. Then because we can't get enough of the MOF, we visited the following week to spend more time at the Above and Beyond exhibit.

While Jack got to go to a super cool beach camp, Sonia attended a less well-run and less fun gymnastics camp.

She was so jealous of Jack's camp, she convinced the camp to let her attend for a day. The trapeze is one of the cool and fun things the kids do.

Charlie's lovely family visited. We were so grateful!

Then we went to the Oregon coast for a few days. Kids stole my phone - took selfies.

One of our favorite beaches in the world thus far in Manzanita.

Then we headed to Camp Nor'wester. It's a summer camp for kids ages 9 and up. We got to see what the kids do for a month completely disconnected from parents and society in general.

The camp is on beautiful and secluded John's Island in the San Juans.

The family at family camp. We didn't shower for days.

Loved this fallen tree sculpture

Cajones

In July, Sonia attended the birthday party of twin boys. The theme was magic and the boys dressed up as magicians. The invitation had invited guests to come prepared with their own magic tricks but I missed that detail. However, after the boys performed, the parents asked if any of the kids had a trick prepared. To my surprise, Sonia stood up and said she did. She had a quarter and held it up for the group. Then she put her hands behind her back, dropped the quarter (not surreptitiously) behind her back and presented her empty hands to the group. The kids were not impressed but the adults clapped loudly.

So I was less surprised when Sonia declared she would be performing at a talent show the last night of a family camp we attended at Camp Nor'wester last weekend. She told me she was going to dance. I asked her what music she would dance to and she looked at me blankly. She signed up, did a short display of the result of about 5 ballet lessons, and received loud applause for her efforts.

She thinks people are applauding her talent but when I applaud, I am applauding her nerve.

Dressed up for camp dance

Travel with Sonia

This summer, we agreed that each parent would take a trip with each child. The two kids are very different and our experience of them together is very different from our experience of them separately.

Sonia and I went to LA. We stayed with my sister for two nights and then with a friend from my  college year abroad, Stephanie. We visited Universal Studios, the Broad museum, the California Science Center. It was really hot but we had a great time. Stephanie teaches special Ed and has two children. They were so welcoming to Sonia. Both kids are really easy to travel with when we are alone with one of them. Sonia can roll with changes or unexpected events. She was good company.

We visited the infinity mirrored room at the Broad:

A couple of weeks later, we went on our annual camping trip to the north Cascades with an old friend of mine and her family. We've gone on many trips with them. They are an adventurous family and lots of fun to be around. Dad in the family loves photography and he made this cool collage:

During our time in LA, Jack got solo time with my mom and stepfather. They caught crab and visited the undersea museum. He spent our camping weekend with Ryan. They watched the Blue Angels and celebrated with manly chocolate croissants, and molly moon's ice cream. Lots of fun had by all. Summer is really flying by. As the kids get older, my time with them passes more quickly.

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