Rhode Island! « Oscar-Go

We went to the ocean this summer! For a week! For the first time!

We rented a little house (400 square feet!) right on a salt water pond, a half a mile from the ocean, in southern Rhode Island. There was a near-constant ocean breeze blowing off the pond onto the deck (300 square feet! where we spent most of our time when we were at the cottage) and also in through the sliding doors and right through our little cottage. We read books, we played in the waves, we built things out of sand, we had lazy mornings, we found shells, we got eaten alive by mosquitoes, we stared at the sky and the ocean, we got sunburned, we explored a couple little towns, we had absolutely no agenda. It was bliss.

However, our week did not start out blissfully. Oscar woke up on the morning we were leaving with a sore throat and a runny/stuffy nose: a cold. I think we went through an entire box of tissues in the car on the way to Rhode Island. Oscar being sick is the single most stressful thing that happens in our lives, because we just never know how any given illness will manifest in his body or how serious (dangerous) it might get. Oscar and I both cried in the car on the way there. None of us breathed that easy light breath that comes with hitting the road toward vacation. My mind ran rampant with thoughts of where the nearest doctor might be, the nearest hospital, whether or not there are any doctors in Rhode Island that know anything about SMA. How much an out-of-network hospital visit might cost us. Whether or not any doctors there would be willing to listen to our pediatrician’s advice over the phone and not admit Oscar if his oxygen dipped low like it did back in June when he was sick.

We had all been looking forward to this vacation for a good solid year—from the time it was just a passing thought: hungering for the ocean, a week to just be, a real complete deep relaxation. And now that was all in question. It might not happen. My mind ran through all of the things Oscar had missed (or occasions on which he had been sick) in the last 18 months because of being sick: visiting author at school, a close friend’s birthday party, New Year’s Eve celebration with his cousins, Mother’s Day, Father’s Day, the entire last week of second grade (and his school is K-2, so he missed the end of this school altogether) including special theme days, the second grade assembly, the bus parade—and more. Now he might miss vacation, too? ARE YOU KIDDING ME?! Oh—and another thing, when Oscar gets sick, he always gets sick for a full week, so we prepared ourselves for Oscar being sick for the entire vacation.

It turned out to be a minor cold. We skipped the beach the first day (Sunday) and stayed at our cottage and read books and took a dip in the saltwater pond. Oscar had a low grade fever for 3-4 days and a stuffy nose for a bit longer. After Sunday we took him to the beach anyhow and the saltwater seemed to do wonders. My panic eased a good bit by Monday, diminishing each day and was completely gone by Thursday (we are never completely out of the woods with Oscar and illness until he is all the way better—there is always the chance for a relapse/secondary infection). Early morning walks alone to the ocean helped a great deal. David remained pretty calm the whole time.

Despite the fact that I just wrote three paragraphs about Oscar being sick while we were on vacation, it is not what any of us hold in our hearts about that trip. We hold onto the magic of being away. We hold onto the magic of being at the ocean. We hold onto the magic of not having anything on our calendars, our agendas. We also had a “google-free” vacation. No screens other than to check the weather or look up directions to somewhere we wanted to visit. Before we left Oscar even said, “I’m not going to use the iPad or watch while we’re on vacation, we’re going to be at the OCEAN!” It is profound how a week away from screen time can feel like a real detox. It was heavenly.

Oscar has seen the ocean twice before. Once when he was 9 months old (while visiting friends in Connecticut we took a couple days in Rhode Island). And once when he was 4 and we spent a day at the Pacific Ocean while visiting San Diego. So during our vacation we kept thinking, “What took us so long? Why didn’t we do this before?” David and I both have fond memories of ocean time from our childhoods that have helped shape us. Why had we not taken our boy to the ocean, for more than just a little peek, before now?

Well there are a couple answers to that question. For five out of the last seven years we have attended the national SMA conference, which is held in a different location every June. Several of those trips turned into 10-day vacations which included sight-seeing, visiting with friends or family, and the like (great trips, not relaxing at all). This year the conference was at Disneyland, same place it was three years ago—a long way to go and a location close to a lot of friends and favorite old haunts in San Diego. We decided to skip the conference this year so we could afford—from a time and money standpoint—a real ocean vacation.

The second answer is that this was the perfect year to be Oscar’s first year at the ocean. Oscar has grown leaps and bounds in his comfort level, confidence, and bravery in the water this year. Oscar has been doing aqua therapy since just before he turned four. Twice a week he practices swimming laps, sitting balance, trunk extension, stretching, and a whole host of other activities—most of which he has made up himself. He can do things in the water he can’t do out of the water because he has a sense of freedom in the water. And within the last year he has begun swimming under water. When he started, he was scared of even getting a drop of water on his face and now he has worked his way up to a whole variety of underwater activities.

So, the ocean was amazing! Oscar used his floaty neck ring and bobbed up and down on the waves, even the big ones. For the really big ones that were threatening to break right top of him, David would throw him up in the air over the wave and then catch him on the way down. Oscar felt the freedom of floating on his own with the ocean waves. He had a chance to ride some waves in to shore. He was ecstatic.

And on the last day when the waves were too big and breaking too fast for any of us to be particularly comfortable in the water David took Oscar into the shallower water right in the beach wheelchair so he could still ride the waves a little bit, even if he wasn’t submerged.