Sweet Angels

Marilee moved across the street when I was in junior high. That was a terrible time for me. I was taller than all the boys, I was a goody-two-shoes who sat in the front row, and I wore too much self-tanner on my face, which nobody clued me in on until .... adulthood? Every day was pure embarrassment. I don't really remember having many friends either .... Until Marilee moved in. She and her family had just come from Olympia, Washington, a place that sounded so beautiful. I felt bad she landed in Roosevelt, Utah, but was secretly also really excited and hoped we'd be friends. I can't remember if it was she or I that initiated our first hang out: a bike ride around town. But we got along instantly and were close until she moved again near the end of high school. She and I would wake up early before school to go running (???). After school we'd end up in her basement singing really loud karaoke. When a local home-schooler, Miriam, came to school around that time as well, we three connected and called ourselves the MMMs. So cool. Sooo cool. We sang at church missionary farewells, we danced in the high school drill team, we crushed hard on lots of boys. We had the best of friendships.

Fast forward to marriage, motherhood, adulthood. The last I saw Marilee, she was living in Tucson and I was living in Phoenix. My kids and I drove the two hours south and stayed with her family for a few days. My kids played with her kids, Laya and Eli. She was pregnant with Evan. She had a backyard with a hose and playhouse and unlimited Icees. She told me about Eli and about how Evan might also be diagnosed with what Eli has. Awhile later I found out he had. I don't know what Marilee goes through emotionally on a daily basis, but I have a small guess. She and her husband Brad have turned their pain into something to help others. It is amazing to me to see them navigate an impossible situation with such grace, with an eye to the future of treating other kids with this fatal disease.

Marilee wrote and performs this song about her boys, and each download will contribute to funding research for a cure. Please take a minute and download on iTunes, Google Play, Amazon, Spotify, etc. Or you can contribute directly to the CureGM1Foundation, which all goes to finding a cure.



You can follow her blog for updates about their darling family and their efforts to help their children and others with the disease: GM1 Gangliosidosis Type 2 - Our Experience

One Year of Lux School: Done

July 15 marked the last day of school! And, yes, they were still wearing jackets in the morning! Now it's two months off and then we'll be right back at it come September 15. Karolina's dad and I switched morning car pool duty each week and the kids came home everyday for lunch via the bus and then home again in the afternoon on the bus. I got used to the lunch time interruption and - gasp - even learned to love it. I couldn't string as many errands together as I wanted, but it was always nice to take an afternoon walk to the bus stop, chat with the other moms while we waited, walk home together, eat lunch, then all walk back and wait together again. Aaaaand then go back a third time in the afternoon for the bus (on MWF, at least; on TTh school ended at noon). What's that popular hashtag? #slowliving ? I guess that's us. It feels good.

I forgot to get a picture with Sienna and her teacher, but here's Noah with Joffer Paola (notice his cute slippers he puts on everyday when he gets to school).

For the end of the year, Paola sent home a huge binder documenting everything they did that year, but Sienna's teacher provided digital photos of her various field trips and events. So here's a look at some of Sienna's fun field trips (and for Noah, you can imagine much of the same).

They visited a couple farms throughout the year. 

They got to milk a cow.

 They got to drink the milk.

They ate lunch together.

 They tasted cheese.

 They stuck their hands in cheese.

 They saw baby pigs.

 They brushed tiny horses.

They rode tiny horses.

 They made pizza with the dairy cheese.

 They looked adorable among the dandelions.

They went on forest walks and played games. 

 They collected feathers, sticks, rocks, leaves and moss.

 Sienna remembered this as "the day I was really cold." Poor girl. I did not dress her properly for this day at all.

They dressed up during Carnival.

They celebrated each others' birthdays.

They got a visit from St. Nick. I forget who the other creepy dude is....

Creepy dude gets a hug while government employee takes a photo...

Smile! You're all about to get a treat bag or be banished to hell. I'm sure that's how the story goes.

They made pinata thingies?

They held frogs!!!

They played the drums.

 They played various brass instruments, as you know...

They learned how to stretch before exercising.

They had parents come to class and read a story.

 It was a Mo Willems story, entertaining for even the kids who don't understand English.

One of the final events of the year was a carnival/festival thing. Noah and Ariadna danced.

 Random games and face painting.

 Noah's class had an art show to exhibit all the work they'd done that was inspired by Pablo Picasso over the year. Here he is with some of his works of art. (And if you ask him, he'll tell you it's pronounced Pabloo Picasoo, the Luxembourgish way, of course.)

Right after school ended, there were two weeks of summer club. The kids got to hang out with their school friends some more, but no school work this time. Only fun, fun, fun. 

I got my bike fixed and Justyna and I biked to and from the school with the kids every day. She went ahead with the girls on bikes, and I stayed with Noah, who still prefers his scooter.

The last day of summer club was, surprise surprise, a carnival of sorts. 

I'm really proud of these kids. It was a hard year at first, and near the end we were all anxious to be done. At both of their last parent teacher meetings, their teachers said they don't talk much. But they understand a lot and are progressing well otherwise. So we are all hoping next year brings some more chatter from these cuties. Bring on summer (with less rain pleeeeaaasseee!)!!