Oscar-Go

 

August is SMA awareness month. This would be a good time to finally post about our trip to California and the Families of SMA conference!

In June, we spent nine days in southern California. We flew into Orange County, rented an accessible van, and drove to San Diego, where David & I used to live, for four days. Then we headed back up to Orange County and the Disneyland Hotel, where the Families of SMA conference was held this year. It was an incredible trip, connecting with old friends and meeting new friends, visiting favorite places and new places, and being a part of the incredible community that is FSMA.

Travel

We’ll just say that our travel to California was an adventure. We flew out of Rochester, had a brief layover in Chicago, and landed in Santa Ana. We checked two bags plus Oscar’s car seat, gate-checked Oscar’s power chair and a large case containing his cough assist, nebulizer, and wheelchair battery charger, and carried on 4 bags containing food, toys, books, drawing materials, as well as the seat cushion and joy stick from his power chair. Upon landing in Santa Ana, my name was paged overhead, asking that I stop to speak with the gate agent on the way out of the plane. We thought, oh good—they’re going out of their way to accommodate us, making sure the process of getting Oscar’s wheelchair and medical case goes smoothly (it did not in Chicago). But we were quite mistaken. They paged me in order to inform us that Oscar’s powerchair had not made it on the airplane. It supposedly got stuck in an elevator in Chicago and they did not hold the plane for the chair. My immediate response was one of shock, disbelief, and numbness. David found the airport to suddenly be spinning and nearly threw up. Oscar said, “This is a total emergency.”

Here is the sign we put on Oscar’s wheelchair (perhaps we left off the most important piece of information “Be sure the plane doesn’t take off without the chair.”):

We were directed to baggage claim where we were greeted by an incredible United employee who was so broken up about the chair not making it on the plane that he had tears in his eyes. He set us up in a hotel across the street, along with meal vouchers, for the next six hours while we waited for Oscar’s chair to arrive on the next plane. It was not a fun a six hours, and we arrived in San Diego at 9pm pacific time, after having been up for nearly 20 hours. We certainly survived, and sure things could have been worse. But this does bring up some questions about air travel for wheelchair users, and some concerns about how accessible air travel really is. That is a discussion for another time, as there are too many happy events to report upon from the rest of the trip.

San Diego

Our first morning in San Diego (and every morning thereafter) we went to our favorite bakery Bread & Cie and ate an inordinate amount of carbohydrates and found ourselves to be in a state of bliss.

We spent two afternoons at our favorite beach, Torrey Pines (the beach where I proposed to David 12 years ago):

So, what can Oscar do at the beach besides play in the sand?

Thanks to a tip from our friends who we met at our very first FSMA conference, we learned that all state beaches in California have beach wheelchairs that can be borrowed for use on the sand. Here’s a clearer view of what the whole chair looks like:

The chair is outfitted with these huge, lightweight,  hollow tires that will not sink into the sand (as opposed to a typical power chair, which, sadly, would not be able to handle sand at all). Liz saved the day again with pillows to pad the adult-sized wheelchair so that it would be more suitable for Oscar. We’re not sure the wheelchair is intended to go in the water, but as we wheeled Oscar toward the water and discovered, as a wave came in, that the chair indeed did float, there seemed no better option than to use the chair in the water! David & Oscar must have spent about an hour and a half playing in the waves.

We also went to the San Diego zoo.

And we caught up with many friends.

We basically ate our way through all our favorite spots in San Diego, including a large gathering at Filippi’s Pizza Grotto.

The last time we were in San Diego was over five years ago, when I was just a handful of weeks pregnant. Everyone was thrilled to meet Oscar and we were thrilled to catch up with some great friends.

Joshua Tree

We made a stop at Joshua Tree National Park, in the Mojave Desert, on our way from San Diego to Disney. The drive was longer than we remembered, and even longer with a four-year-old who isn’t comfortable sitting in his car seat for extended periods of time. Nonetheless it was all worth it to show Oscar one of our favorite places on the planet, the place where we got married nearly 11 years ago. We spent a couple hours in the Hidden Valley area of the park, our favorite place to camp, and the place where we took a group hike on the morning of the day we got married.

 

And then came Disney

We spent one day in the park. Considering that none of us had done the Disney thing before, and considering that Oscar finds most movies to be anxiety-producing, we all found the park to be a bit overwhelming and over-stimulating. Nonetheless we had a blast checking out the castle, visiting Pirate’s Cove, and Oscar’s favorite: the parade!

At the hotel we basked in luxury. Here’s the view from our room:

Oscar spent many hours in the pool during our five-day stay.

And my dear friend Sarah, from college, came to visit us with her little one.

The Conference

It’s hard to believe this was only our third Families of SMA conference. This once-a-year gathering has become such an important part of our lives. It’s the one time a year we get to leave our tiny little SMA island, where we live mostly alone—in terms of interaction with other SMA families—and head to the giant SMA island where little needs to be said because everyone intrinsically understands the complications, triumphs, heartaches, and joys of parenting a kid with SMA. It’s also a place where anything and everything can be said, without having to provide extensive explanation.

My mom met us at Disney for the conference. We were glad that, as in years past, she was able to join us for the conference. She also enjoyed catching up with friends from past conferences, attending the workshop session for grandparents, and hanging out with Oscar while David and I attended workshops.

It was incredible to see Scarlette and her family again.

We had met them at our first conference in 2010, which was also their first conference and we hit it off right away. And we hadn’t seen them since! Oscar & Scarlette are just 6 months apart, and enjoyed spending time together at the conference. We saw many friends from previous conferences, and met new friends as well.

Jack and his family are another favorite family we met our very first year. Oscar and Jack, then, were in matching manual wheelchairs. The next time we saw Jack, the boys were in matching power chairs. This year Jack has upgraded to a larger chair. Oscar had an even greater sense of independence at the conference this year, zooming around with the kids, and fearlessly approaching people to say hello.

We led a workshop session again this year, much like the session we led last year. It was entitled Writing Our Stories: A Parent’s Workshop in Healing Through Creativity. We led the participants, who were other SMA parents and grandparents, through some writing exercises, and gave them resources to help them continue their creative journey at home. Studies have been done showing that writing through difficult situations has positive physiological benefits to the body, in addition, of course, the the positive effects it has on emotional and mental health. We had a small but really lovely group (competing with Disneyland is pretty difficult—it seemed as if most of the sessions were smaller than usual this year). Families of SMA sent us an email after the fact, with a message and a piece of writing from one of the workshop participants. She had lost her seven year-old son to SMA five years ago. She thanked FSMA for the workshop and mentioned that she started the piece of writing at our workshop which she then finished on the five year anniversary of her son’s passing. You can read the piece here. It’s a beautiful story that explores the depths of loss, the hardships of navigating a world that is not fully accessible, and how the power of friendship can help overcome any barrier. It was an honor to witness the brave and powerful writing of this mother, and of the other participants at the workshop. Families of SMA always goes out of their way to thank us for leading a workshop, but we always turn that back around on them and thank them for the honor of being involved in this way. It is truly a gift.

The workshop sessions we did attend as participants were great as well. My favorite every year is the session of type 2 parents discussing various issues with one another. I also found the orthopaedic session to be very helpful, and reassuring that the choices we’re making regarding bracing for Oscar (especially his most recent TLSO back brace), are the right choices, despite some of the pushback we’ve gotten from some of our local doctors. I asked the doctors leading the workshop session about the duration of time Oscar should be wearing his TLSO. Kids who already have scoliosis need to wear it all the time. That is not yet the case for Oscar. He wears it more for his kyphosis, the curving forward of his spine. One of the doctors suggested that reclining his wheelchair seat might be a great alternative to wearing the brace all the time in his wheelchair. I was delighted that Kristen Krosschell, the physical therapist well known in the SMA community, piped up from the audience and said that since she had observed Oscar interacting with others from his wheelchair, she did not think reclining his seat would be a good choice, because he is a kid who loves being active and in the middle of the action—he’s a kid who is more often found leaning forward, into the fray. I love that from just observing him briefly zooming around the conference, she is able to have this insight, and offer this individualized advice.

As always, it was hard to leave. At home, Oscar almost never sees another child in a power chair. At the conference, the kids in power chairs take over the hotel! We’re thrilled to learn that next year’s conference will be in Washington, D.C., within driving distance for us!

Since it is SMA Awareness Month, please consider sharing this blog post, and our web site with others. The more we raise awareness, the more thoughtful people can be about accessibility and acceptance. Our goal is to remove as many barriers as possible, allowing Oscar to fully experience the world around him.