Oscar-Go

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.

Friendship

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.

Summer

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?

(photos from past FSMA conferences)

It’s been too long since we’ve written! Sometimes we’re just too busy living life to write about it…

My first experience with the organization Families of SMA was days after Oscar’s diagnosis when I timidly visited their website for the first time. I saw a photograph of two children from behind—a young girl in a power wheelchair with supports holding her head in place, and a little boy walking beside her, holding her hand. This photograph, at that time, made me sick to my stomach. Would that be my little boy? How soon would he not be able to hold his own head up anymore? Also, on that first brief and terrifying visit to www.fsma.org, I read the words, “Life with SMA doesn’t have to be any different,” and I got angry. Really angry. How dare they tell me that? My whole life has just been turned upside down and is quite different from anything I ever expected.

A few weeks later a large package was delivered to our door with an FSMA return address. By large I mean easily two-and-a-half feet high, wide, and deep. I was scared to open it at first. What scary things associated with this new diagnosis could be lurking in this box? But the contents were not scary at all: a bumbo chair, bubbles, nerf ball, squirt gun, jack-in-the-box, a dvd, and a handful of other toys.  I was dumbfounded that strangers in an office in Chicago had sent this box of gifts to our family. The generosity itself present in this offering meant more to me than the items, and indeed turned out to be symbolic of the nature of the organization.

Six months later, the three of us, along with my mom, boarded a plane to California to attend the annual FSMA national conference. We were like deer in the headlights arriving at the hotel where over a thousand others were also gathered for the same purpose. But there we met others who were living the same new normal as we were. We found a community that has become like an extended family.  Each year now, we look forward to the FSMA conference with great anticipation—a chance to connect with other families affected by SMA, and to learn from the top SMA researchers from all over the world.

Today, I can look at that same photograph that is still on the website and delight in the beauty, the independence, the love that is depicted (and incidentally that power chair the girl is driving is the same model that Oscar uses today). Also, I can find real truth in the words that first made me so angry. When we are able to openly embrace all that comes our way, indeed life doesn’t exactly have to be so different with SMA.

But what does all of this have to do with yoga, you might ask? My friend and colleague, Kristen Zory King, is doing a 30-day Bikram Yoga challenge to raise money for FSMA, in honor of Oscar. For those of you who don’t know about Bikram yoga, it is also known as “hot yoga” because it is done in a 105 degree room. The same 26 poses are performed twice during each 90-minute class. And Kristen is doing it! She’s 16 days into it already! Kristen is keeping a regular blog about her experience and she has an indiegogo page she is using to raise money.

Kristen, during last summer's Harry Potter Birthday party at Writers & Books! Always championing a good cause!

Kristen’s commitment to 30 days of yoga has inspired me. There was a time in my 20’s when I was attending Iyengar yoga classes twice a week. Now I can’t remember the last time I had an exercise routine. Hell, I can’t remember the last time I got any exercise that didn’t involve lifting Oscar. So, I have decided to take on my own yoga challenge this month. I am committed to completing a minimum of 4 minutes of yoga per day this month. Why 4 minutes? This is about how long it takes me to complete two rounds of sun salutation, and that is about all I can concretely commit to. And indeed 4 minutes of yoga a day is making a difference!

Kristen was worried that she set her fundraising goal too high at $500. She surpassed it less than a week into the challenge. I wasn’t surprised. My goal is to see how far beyond her original goal we can go. Double? Triple? Kristen has set some fun parameters for possible donation amounts ($20 vote of confidence, $30 dollar-a day, $52 dollar per pose, $105 dollar per degree). I’d like to offer up my own level of support, the Sally Special: $4 for a dollar-a-minute!

What really matters though, is spreading awareness about FSMA, and the way they are making a significant difference in the lives of so many. In addition to the incredible support they provide through care packages and the annual conference, they have also funded over $55 million in SMA research in the last 30 years. A million thanks to FMSA!