Orange is the color of endurance. I learned this three days before the year changed over. I googled color symbolism so I’d know what color candles to buy for the private ceremony David and I planned to have in the last quiet hours of 2011, after Oscar had gone to bed and before we collapsed completely. To honor for ourselves two years of endurance. Two years to the day of Oscar’s diagnosis. I bought two other colors of candles also. I don’t remember what they were. We never burned any of them. There was no ceremony. Just the red of the digital clock high on the wall over the hospital room door. Oscar’s first respiratory infection, his first hospitalization. We spent the last hours of 2011 wondering when his O2 stats would stabilize, wondering when our son’s breathing would slow, eyes trained on the monitor’s numbers. We endured the passing of the new year in the PICU. The orange candles are still in the dining room cabinet, behind the wooden doors, waiting.
And this is how 2012 started for us. Or how it didn’t start. Oscar was admitted to Golisano Children’s hospital on the afternoon of December 31, 2011 with RSV, a 
difficult respiratory infection. He spent six days in the PICU and then another three on the general pediatric floor. The readjustment to life at home after this traumatic experience for all three of us was intense, and gave a particular focus to the first two and a half months of the year. We did learn that the level of care here in Rochester is exceptional. We also learned that we can handle this. We can, all three of us, endure. We can endure hospital stays. We can endure anxiety. We can endure SMA. We can endure a life path unlike that which one would imagine for him or herself.
Endure. Endurance. Not like an outside force that has been placed on you just for the sake of being troublesome. More like an endurance run. Something that chooses you but you don’t fully understand what “it” is until you’ve lived it a bit. Something that has very difficult moments, but is not inherently bad. In fact, it can be really beautiful. Invigorating. Enlightening.
We’d do anything for our little boy. For love. For the love of this life. And because the scenery will always change. There will always be something new to learn.
The poet Mary Oliver asks
What good does it do
To lie all day in the sun
loving what is easy?
We’re all learning to embrace challenge and to see struggles as opportunities to learn and grow.
If you’ve been following this blog, then many of these highlights from 2012 won’t be a surprise. We started the blog in March with the aim of writing once a week. We realized that is just not realistic most of the time. So, we’ll update as time and inspiration allow!
• March 22: a miracle happened. Oscar’s power chair arrived. This was truly one of the most exhilarating days. There was a sparkle in Oscar’s eye brighter than usual. His centered sense of confidence solidified. At last, true independence in mobility.
Yes, it really was warm enough for shorts and a t-shirt in Rochester in March. Hard to believe!
• In April we entered the NMEDA van contest with the aim of winning a wheelchair accessible van. As the contest played itself out, it became obvious that the real reason for the contest was for us to raise awareness about disability issues and SMA.
• Also in April, we visited Johns Hopkins for the first time, where we had an appointment with Dr. Tom Crawford, one of the country’s top clinicians in SMA, a neurologist in the MDA clinic. We are grateful for his experience and his proactive and preventative approach. We will continue appointments there once or twice a year. Being able to visit family and the National Aquarium make these trips really something wonderful to look forward to!
• In June, Minnie, Oscar’s PT since he was 14 months old, moved out of Rochester to be closer to her family. She had been our rock and this was a difficult good-bye. In her absence we are building a new foundation of care providers and learning to trust ourselves more.
• Also in June, we presented at the national FSMA conference in Minneapolis. We offered a workshop called “Tapping Into Creativity: Tools for Personal Healing” where we shared with other parents our experience in using creativity to cope with emotional challenges. This workshop was only one of many highlights of the conference. We are so grateful for FSMA!
Oscar and Heather become fast pals at the conference. Seen here making the diver "OK" sign together!
• Later in the summer Oscar started aqua therapy. He loves the pool! This seems good for him in every way: the buoyancy allows him a greater freedom of movement; the warmth of the water facilitates stretching; due to the pressure, breathing in the water is two and a half times harder than it is on land and we’re thrilled that Oscar is breathing normally and using a loud voice in the pool; the work of the pool is allowing him to build muscle; and he looks forward to it every week!
• In October, the van benefit blew our minds. Enough money was raised for us to purchase a van. We are in the process right now and hope that soon we will have the good news to share that we own a wheelchair accessible van! We are still stunned by the outpouring of love and support. We’re working on personal thank-yous to everyone who helped make the event successful. However, many of you who donated with cash or credit card at the event, or folks who helped spread the word, we don’t have contact information for you! So, please accept this as our thanks.
• In November Oscar had his first sleep study. He was terrified but with much preparation ahead of time, he handled it fabulously. The results were unremarkable. There is no identified need for medical intervention (bi-PAP machine, similar to what folks wear for sleep apnea) at this time. That was definitely a relief, though it also leaves us with a problem to solve: how to get this kid to not wake up so much during the night!
Throughout the year we each carved out time for our own creative endeavors. We scheduled Sally one weekend morning each week to write, and David has one evening each week to play music. We each try to sneak in other creative times during the week with David working on some new fiction pieces and Sally continuing to take a memoir writing class at Writers & Books.
David plays a show at Skylark
A line from one of Sally's poems embedded in the sidewalk on ArtWalk
“My job is to play,” says Oscar. And he is an expert. As much as he loves preschool, he delights in weekend mornings when he can stay in bed and play with his “guys.” He invents elaborate stories about underwater adventures, superheroes and imaginary characters. He delights in drawing, reading, playing with legos and his Beatles action figures (John and Ringo are his favorite), along with sea creatures, pirates, and astronauts, and even “girl guys.”
And a few choice Oscar-isms from the year:
Once, while giving a tour to someone who had not been to our house before, Oscar pointed to the bathroom that was currently unusable, while it was awaiting construction to fix a leak, and said, “This is our retired bathroom.”
One summer morning in the car, after David gave a goofy answer, Oscar said, “Are you being sarcastic?” Since then he has accurately called us on our sarcasm regularly.
After asking if food goes straight down or makes a turn when you eat, Oscar asks, “Can you get the anatomy book so I can learn more about how bodies work now?”
O: Mom, can you draw an unexpecting fish?
S: What’s an unexpecting fish?
O: A fish that is made up.
One morning at breakfast, completely out of the blue, “You don’t know what happens in life.”
O: How much do you love me?
D: I love you as much as the universe, the whole planet, all the oceans, all the trees.
O: I love you 30 miles an hour.
And so, although we do hope for 2013 to begin on a more peaceful note than 2012, we do feel more equipped and ready to handle anything that might come our way.
Wishing you delight and wonder in the new year.
With love,
David, Sally, & Oscar
