Archive for December, 2014

The Year in Review

Thursday, December 18th, 2014

We had many adventures this year! Here are a few highlights and snapshots…

First grade!

Right now, the biggest adventure of 2014 feels like first grade. Oscar loves, loves, loves first grade! Oscar came home from kindergarten every day last year with a report that his day was “AWESOME!” Repeatedly this year Oscar has said, “First grade is SO MUCH BETTER than kindergarten!” Oh, how we hope this enthusiasm and joy for learning sticks. At Oscar’s teacher conference earlier this month, his teacher, Mrs. Beato (who is so amazing—we feel so blessed) reported that regularly when she announces an activity that the class is going to do Oscar’s response is a “YESSSS!” accompanied by the fist/pull-back of the elbow gesture of excitement. She said even when it is a small activity that she expected no real response to, Oscar’s enthusiasm is palpable. We feel so lucky that his joy and zest for life and learning is so intense. That’s just who this boy is.

First day of first grade!

Oscar’s kindergarten  day was a half day, and he has made the transition to the full day very well. Though he is often tired in the evening, and goes to bed much earlier than he used to, he’s delighting in that full day of school so much. It has definitely been a big transition for our whole family: Oscar has a whole lot less down time—even after school he has aqua therapy, physical therapy, music therapy or massage therapy a minimum of two days a week, but usually at least three. Since he goes to bed earlier now, our evenings as a family have been cut short, from what we were used to. And Ghi Ghee (my mom) is missing her two (or more) afternoons a week she used to spend watching Oscar while I was at work. I have been surprised that first grade has been a bigger transition for ME as mom than the transition into kindergarten was. Now that he is in school full day, he has a whole life outside of us, and away from me. I was used to him giving a blow-by-blow of his day in school. The day is too packed for him to share it all now. As much as we miss hearing everything, we are so proud of him that he is becoming independent and learning to navigate through the world without us.

Creative Endeavors

In the spring, David played a show at Writers & Books and on the last song, Oscar unexpectedly joined him on cymbal, intuitively knowing just when to crash with the drumstick, and when to play softly with the brush.

Oscar continues to draw. This is a storm trooper with a tooth brush.

And every so often on a Thursday night David can be found spinning records at one of our favorite restaurants, Good Luck—always advertised for with a handmade flier…

David and I worked hard at finding time for our own creativity, carving out little moments when possible. David played a few shows this year, took a couple of fiction writing classes, did some recording, wrote some short stories, and took some great photographs. I finished taking an 8-month memoir-writing class at Writers & Books, joined a new writing group, and even spent two days and two nights at the W&B Gell House, in the woods, alone, writing!

My view for two days of writing at the Gell House.

AND for the first time ever, in our twenty-year relationship, David and I joined our creative forces by creating a show for the Rochester Fringe Festival. The show, Are You Able?, combined music, spoken word, and images (mostly of Oscar, and artfully compiled and presented by our dear friend Tom Kowal). As we always strive to break the physical barriers that might keep Oscar from accessing the world in some way, this performance piece hopefully sparked some conversation to help break psychological barriers that can exist between the able-bodied, and other-abled.


Oscar participated in his first field day at school at the end of his kindergarten year. His PT, 1:1 and all the staff—and students!—helped really make all the activities accessible to him.

Oscar’s social life continues to expand. First grade seems to be the perfect environment for blossoming friendships—in fact Oscar’s 1:1 says she has stepped back quite a bit this year because 1. Oscar is becoming more independent and 2. his peers are stepping in to help him more this year. With a longer school day, he also has more opportunities to develop friendships—we hear stories from the playground, lunchroom, and classroom each day. Oscar and his pal Anne (who was also in his kindergarten class) have become quite close this year:

Dracula and Candy Corn trick-or-treat together.

And a trip to the George Eastman House to see the gingerbread houses:

Over the summer we were able to have a long overdue reunion with some dear friends. After 5 years away from one another, there were many laughs and good times!

Sarah, Dave, Lucas, Hailey, and Scarlet, who are like family to us.

And Thanksgiving was another delicious and successful endeavor with our dear friends—this tradition is 9 years in the making, now.

Fellas full of love on Thanksgiving: David Andrew, David Michael, Oscar, & Tom.

Sacaduros! The magic of Thanksgiving. Donna, Monica, & Sally overtaken by the magic after a long and joyful day of cooking, moments before digging in.


We had another amazing trip the the Families of SMA conference. In case you missed our blog post on that, you can see it here.

At the FSMA carnival night!

We celebrated Oscar’s cousin Emily’s high school graduation.

Oscar had his first summer camp experience at Writers & Books (where Sally works) and it was a big hit! He took 3 weeks: Fairy Tales, Magic Tree House, and Musical Sandbox.

One chilly and rainy summer weekend, we set our tent up in our back porch and slept (almost) outside!

We took Oscar to Sea Breeze, our local amusement park, for the first time this summer, and he had a blast! They were very accommodating to Oscar’s needs. He really enjoyed this airplane ride with his dad, and also the Lazy River in the water park, which we went on five times!

Health and Well-Being

Oscar is doing great! Aside from a pair of week-long illnesses this school year, including what was possibly the dreaded enterovirus, his health has been been pretty ship shape. All of of his therapies are proving to be beneficial, and we are thrilled with his therapists! Oscar increased his aqua PT to twice a week this fall, and it has been great! He has gotten very brave about putting his face in the water, and has held his breath for a record 56.75 seconds! The water is great for his strength, flexibility, and respiratory health, and he loves it!

Some more moments from 2014…

We end the year in gratitude, for one another, for all of you.

Oscar at Durand Eastman Park, 2014, or is it Bob Dylan circa 1970?

2014 Year in Review—COMING SOON!

Friday, December 12th, 2014

Please check back soon for news and photos from the Merulla-Bonn family from 2014!