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Rhode Island!

Monday, August 29th, 2016

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.

We fell in love with Rhode Island and wish we could have stayed two weeks. We plan to go back.

A few more highlights from the week:

Oscar above one of the big waves

The beach wheelchair! Many public beaches have these available to use free of charge.

The view from the deck of our cottage

Our super friendly neighbors!

Frozen lemonade!

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Visiting the Mainland

Thursday, July 31st, 2014

It does take a village to raise a child. We adore our village. We are endlessly grateful for our village, near and far. But truth be told, where SMA is concerned, we live on a tiny little island. A deserted island, in fact. Once a year we get to go to the mainland: the FSMA conference.

In June, we attended our fourth FSMA conference in five years, in Washington, DC (actually at the National Harbor in Maryland). We stayed in another ridiculously fancy hotel.

View from the balcony of our room!

Upon first arriving at the hotel, two days before the conference officially started, we ran into some FSMA friends and these four kids proceeded to chase each other around the fancy lobby, at FULL speed. They did circles around one of the pillars, with no care that well-dressed business people were coming and going. Wild, free, unhinged: childhood.

After the rollicking game of chase, we left the hotel to go have dinner with Nonnie, Oscar’s great-grandmother, who lives close by.

When it comes to SMA, we have always answered Oscar’s questions as he has asked them, and never provided more information than he has requested. He has heard the phrase “SMA” a thousand times around our house and certainly in doctors appointments, and he knows that we go to the FSMA conference every year. However he has never indicated, nor asked, whether he has SMA. In talking about his “condition” (for lack of a better word) he always says (as do we) that his muscles work differently than others and he is not strong enough to stand up, so he uses a wheelchair. On the car ride over to dinner that night, Oscar asked casually, “Do those girls have SMA, too?” In the privacy of the front seat, our jaws dropped open. That word, too, is what did it. It’s the first time he has verbalized having SMA. That he named himself a part of this group in this way. We never told him anyone else had SMA either, though just days prior we had been talking about how he probably knows more about his diagnosis than he lets on. We have always helped him find camaraderie with others in wheelchairs, others whose muscles also work differently. In some ways it is a relief, to know we can all talk a little more freely. To know we have permission to use the name, “SMA.”

This year the conference was all about Oscar. He is old enough now, and outgoing enough—and mature enough—that he jumped right in and met people left and right, and made lots of friends, including those interested in stairlifts United Kingdom. Kids, teens, adults. People in chairs, people who walk. In previous years he has not wanted to go into the kids’ room, because they show movies there and they might be scary or inappropriate (his words). This year he kept saying, “I’ll go but I might not stay.” Oscar suggested David stay to watch the magician with him—and he did, for half an hour—then Oscar kicked David out! And Oscar couldn’t wait to go back the next day! He even watched parts of the Hot Wheels Movie, Shrek, and Little Rascals! And played Super Mario Brothers! All this in addition to doing a bunch of cool crafts, and hanging out with some new friends!

Stevie & Oscar socializing with Leslie, Karen, & Kat at the meet-n-greet the first night.

It’s hard to believe we had only met Stevie Hopkins (Director of Awesome from the 3E Love wheelchair heart company) once before—at the FSMA conference in Minneapolis, two years ago. We have kept up with him online though, and it was a thrill to see him again! A girl at the conference saw Stevie and Oscar talking and asked if Stevie was Oscar’s uncle. I think Stevie and Oscar were both equally honored by the suggestion, and we now call him “Uncle Stevie.”

We saw many familiar faces

Oscar and Sarah!

Oscar, Heather, and our friend Monica cruising the streets of the National Harbor.

and met many new folks

Scarlet (age 3) and Oscar became fast friends!

Oscar also became great pals with Gavin (Scarlet’s brother who is just one month younger than Oscar). They had so much fun in the kids’ room together, in fact, that Scarlet got a little jealous!

Oscar also made fast friends with the volunteers!

…and sweet Blaise…

and Claire and Lauren Gibbs (who started an amazing Facebook page: Humans of SMA. Check it out)!

As usual, Ghi Ghee came along to the conference.

In addition, this year, THREE of Oscar’s physical therapists came, too! His school therapist, Barb Flender

And his aqua therapists, Kat DiNicola & Karen Terp.

They all attended the day of continuing medical education conference that FSMA now offers, and also all came to some of the social events and/or part of the family conference as well. The conference seems to have made a lasting impression on each of them, and they all used the phrase, “next time” in one way or another, indicating they are each planning to attend again sometime. We are overwhelmed with gratitude for their presence. It means the world to us, knowing they, too, have visited our mainland.

This year, one of the sessions we attended was on breathing basics for type II. This is a session that happens every year, and we had not attended it since our first FSMA conference, four years ago. Then, we were terrified. The name “cough assist” sent shivers up our spines, and that was the most tame name of a respiratory support device in the session. Now, using a cough assist is as second-nature as brushing teeth. We were reassured as we sat through the session that we are doing all the right things.

Every year, for the last few years, the volunteers host a dance party. This year, part way through the evening, they played the limbo, and held up a feather boa as the pole to duck under.

They moved the boa to all different heights to accommodate everyone from kids in power chairs, to adults on their feet, to type I kids of all ages in reclined wheelchairs, to babies in strollers. The joyous energy was infectious, and I started to tear up as I watched these volunteers embrace every single person in the room as completely “normal.” There was just pure love and acceptance. Everyone was equal. David and Oscar went through the line a few times, having a blast. I honestly just stood there, overwhelmed with the beauty of the moment.

This conference is a gift. Despite the most amazing village we hail from, no one in that village can know first-hand what it is like to raise a child with SMA. We are alone in this way, in the day-to-day. But on the mainland, we can talk freely about sleep and our collective lack thereof, and laugh about it together. We can toss around acronyms like TLSO and biPAP and not have to explain ourselves—and we can trade tips about using each—along with a myriad of other equipment. We can commiserate about accessibility issues and celebrate the successes of our kids being fully included. We can watch with unleashed joy as our kids chase each other full-throttle through the hotel. We can be natives of the mainland for three full days each year. These three days allow us the room we need to breathe for the rest of the year. The reminder that we are actually not alone.

We are filled with gratitude for the amazing Families of SMA.

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CALIFORNIA! San Diego, Joshua Tree, Disney & the FSMA Conference

Wednesday, August 14th, 2013

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):

Our dear friend Liz joined us for fun in the sand (she was kind enough to provide the sand toys, as well)!

Our dear pals John & Melinda and baby Penny also joined us!

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

Beach wheelchair surfing!

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.

At Bread & Cie once again! With Carolyn (L), and her daughter Katie who I used to nanny and who is now in college!

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

Deeply involved in a meal at our favorite sit-down pizza joint with Dan & Anna, Adriana, John, Sheila, & Ananlise, Carissa & Dean, Liz, Kathy, and John, Melinda, and Penny.

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.

Oscar mimics the limbs of the Joshua Tree.

Oscar and mom

Up on the rocks with Dad!

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.

Oscar and Ghi Ghee being very silly wearing glow sticks as earrings.

It was incredible to see Scarlette and her family again.

Waiting for the fireworks one evening of the conference

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.

Oscar and Jack chat before resuming their zooming around the hotel ballroom the first the night of the conference.

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.

Tags: beach wheelchair, SMA conference
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FSMA Conference 2012

Thursday, July 26th, 2012

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It’s been a month since we returned from the conference! I’ve had a hard time trying to figure out just how to capture the experience in words. There is far too much to contain in this small space. So I’ve attempted to put snippets together here for you to get a beginning idea of what this conference was like for us.

We knew the conference was going to be good this year, but we couldn’t have imagined just how amazing the experience would turn out to be. This is the second Families of SMA (www.fsma.org) conference we have attended. Our first was in 2010 in Santa Clara, CA. This year it was in Minneapolis. Every year, this conference gathers over a thousand people: children and adults affected by SMA, their families and friends, and researchers and clinicians who specialize in SMA. Two years ago we were like deer in the headlights. It was only six months after Oscar’s diagnosis and we were terrified. This year, as soon as our accessible taxi pulled up at the hotel, I started crying because I was so happy to be there.

Air Travel with a Power Chair and Oversized Medical Equipment

Arrived at the Minneapolis/St. Paul airport! From L to R: Oscar in his power chair, carry-on #1, large suitcase with ALL our clothes, luggage cart with: huge green case for cough assist, black bag with car seat, & carry on #2. Missing from photo: tote bag with booster seat which also carried the seat cushion, joy stick and foot rests from O’s power chair onto the plane.

This was the scary part of the trip this time. We had no idea what to expect. We called the airline ahead of time, twice, to let them know we needed special accommodations. The first time, I spoke with someone who tried to assure me everything would be fine, yet he didn’t sound like he had experience working with travelers with special needs. David called the second time. He spent an hour convincing the airlines that the oversized bag containing the cough assist machine and the battery charger for Oscar’s chair would indeed be gate-checked and could absolutely not be checked at the regular baggage check area 1. because it was fragile and needs special handling and 2. because it absolutely could not end up on the wrong plane. All in all we survived just fine, as did all the luggage and equipment. We ran into some really lovely and thoughtful TSA folk (both in Rochester & Minneapolis), and some great airline employees as well. We also met some clueless, insensitive airline workers who seemed to have never come across travelers with a wheelchair or medical equipment before and who really had no idea how to listen. At the gate in Detroit David explained that we had a wheelchair and an oversized case with medical equipment to be gate-checked, and then I explained two more times (because she seemed not to understand what David had said). Nonetheless, when she saw our oversized bag she asked accusingly, “What’s that?!” And so we explained to her for the fourth time. For further information, you can read more about safety considerations for active travel in this article, which can be found at sites like https://active-travel.uk/blog/safety-considerations-for-active-travel.

The sign we put on Oscar’s power chair to go on the airplane. After being at the conference and getting some great tips from adults who have traveled widely, I added some additional handwritten instructions!

We also had a baggage handler in Minneapolis take the cough assist bag out the door on the jetway, realize it was too heavy to carry down the stairs, and tip the bag end over end the rest of the way down. David saw this and had the foresight not to throw the door open and chase her down the stairs. I would not have had that foresight. I may have gotten arrested for entering a TSA area. However, if I had been the one to see it, not David, I’m pretty sure I would have curbed my tongue and Oscar would not have repeated the F-word. Nonetheless, I don’t blame David one bit. He had every right! Let’s just hope Oscar forgets that one for about a decade.

All that said, one of the most amazing parts of traveling with the power chair happened right here in Rochester, on our way out of town. It was nearly time to board the plane and so David set to work preparing the chair for the flight: disconnecting the joy stick from the power and removing the screws which hold the joy stick in place so we could carry it ourselves onto the plane, along with removing the seat cushion and foot rest supports which are attached to the chair by velcro. I held Oscar on my lap while all this took place. And then the baggage handlers came to take the chair down the elevator to the plane. As they began to wheel the “go power chair” away, Oscar burst into tears. In three short months, this chair has become a part of Oscar. I nearly burst into tears as well. What a gift modern technology has brought to our family in the form of a chair powered by a rechargeable battery, operated by a simple joy stick.

Gratitude

Folks of all abilites participating at the first ever FSMA dance party

The entire conference experience was incredible. More than anything, being around other folks with SMA and families of folks with SMA was such a relief. David kept saying, “All year we live on this little island. Here the island is bigger.” Oscar fit right in, zooming around with other kids. As parents there was an understanding, familiarity, camaraderie. Often no words needed. An innate empathy. It was a relief, and beautiful, to watch and be a part of. No questions were asked as parents poured white powder (Miralax, for easing constipation) into their children’s juice at breakfast, just knowing nods. No curious or worried stares lifting a limp kid from chair to pool. Each family had their own technique. Sitting the kid at the edge of the pool, legs dangling in, while parent jumped in, sometimes while holding the child steady. Placing a neck floating ring on the child before carrying them, one arm supporting the shoulders one arm under the knees into the warm pool. Luckily the “hot tub” was actually a large pool because all of the SMA kids with their low muscle tone need the warm temperatures. At any given time there were more people swimming in the hot tub than in the regular pool. There were varying degrees of floppiness that all disappeared as soon as the child entered the water. Our room allowed a generous view of the pool at all times and I found myself gawking, not the way others often gawk at our kids’ bodies and equipment, but with a sense of joy, a deep gratitude for being part of this amazing community.

“Do you want to zoom with me?”

Oscar zooming after Leah

This is what Oscar asked seven-year old Leah, the first kid in a power chair he met at the conference. And sure enough, Leah zoomed with him. I think Oscar was surprised by how fast and skilled she was and that she didn’t just let him “win.” Oscar zoomed with many kids over the four days we were at the conference. The majority of conference activities took place on the second floor of the hotel. In addition to the elevators (at which there was always an impressive line-up of chairs) there was an escalator and several sets of stairs which led down to the first floor. As Oscar zoomed around, although he never got dangerously close to the stairs, we still had several near-heart attack moments, as he’d zoom past the stairs or in the direction of the stairs before circling back to safer ground.

Sarah & Heather

Oscar also asked Heather to zoom with him. Heather is a young woman in her early twenties and she happens to be the very first person we met upon entering the hotel. Oscar introduced himself while I checked us in and David got the bags inside. We ran into Heather again, not long after Oscar had zoomed with Leah, so he invited Heather to zoom with him as well. Heather and Oscar took quite a liking to one another, and spent as much time hanging out together during the conference as possible. Heather and her friend Sarah (reunited after having met each other at the conference nearly twenty years ago!) even brought back a build-a-bear from the Mall of America for Oscar. They named the bear Mr. Hotwheelz because that’s the nickname Heather had given to Oscar.

Sleep?

Every night, as we did cough assist with Oscar, I couldn’t help but feel a sense of comfort, knowing there were so many other cough assist machines in the hotel.

Every year there is a Sharing Your Type II Experience workshop (as well as similar workshops for other subgroups within SMA) in which parents make a list of topics they’d like to cover and then the discussion is open to all attending the session to offer experiences and ideas with one another. One couple said they’d like help getting their child to sleep better at night. When this topic was mentioned, there was a noticeable murmur throughout the crowd confirming many parents would also like the same help. The moderator of the discussion said, “If anyone has that answer, I’d like it! My daughter is eighteen and we still get up several times a night.” Folks with SMA rely on their parents or other caregivers to roll them in the night. On a good night in our house, we only get up four times to roll Oscar (twice each for me and David). A bad night can easily be a dozen wakings. And that means the average night falls somewhere in between: 6-8 times. David and I are always tired. Most of the time we’re just used to it. Once in awhile it becomes debilitating. The good news: we’re not alone! The bad news: there is no real hope of getting a decent night’s sleep until Oscar goes to college. Hmmm…

Our Workshop Tapping Into Creativity: Tools for Personal Healing

It was an honor to be able to present at the FSMA conference. Two years ago when we attended our first conference, we felt a need to be able to express and share the difficult emotions that go with being the parent, or family member, of a person with SMA. Although we forged connections with a few other families we met at that first conference, and were able to share triumphs and challenges with them over time, there was no forum at the conference to facilitate that. Since David and I have been actively using the creation of music and writing to help us live through and process our emotions around SMA, and since I have been leading creative writing workshops for a number of years now, approaching FSMA with the possibility of this workshop seemed like a good idea.

From our perspective the session was successful. We had about twenty or so participants. We shared some of our journey with the arts over the last two and a half years including sharing some of our own work, discussed strategies of how to incorporate a creative practice into a challenging schedule, and we offered a resource guide which included lists of inspiring books, blogs, records, quotes, poems, and a series of creative exercises to try at home. Participants were also led through a brief writing exercise. It was an honor to be in a room with others sharing in discussion about the link between creativity and emotion as it relates to living with SMA. We already have ideas of how to improve the workshop, should we offer it again!

The People

Oscar & Stevie

This is what it was all about. We were overjoyed to see a number of people we had met two years ago, and to meet many new folks. We were blown away by all of the love we experienced in this one hotel. Everything from having Mary Schroth (head of the FSMA Medical Advisory Board, clinical pulmonologist and overall SMA guru) reach across the table to hold Oscar’s juice for him at lunch on our first day there to meeting Stevie Hopkins and his mother and becoming acquainted with his company 3E Love. It was amazing to have Oscar and Jack reunited. Two years ago they were in matching manual chairs and now they’re in matching power chairs. Seeing Quinn—who easily could have won an award for being the speediest kid in a power chair there—and his family, who we’ve kept up with via email, was such a joy. Meeting a single mom from who was there alone with her two year old daughter all the way from California. Watching all the type I families with all their equipment: what we had to bring with us is nothing compared with these families, and yet there they are. Every year there is panel of adults living with SMA sharing their experiences and perspectives that offers so much hope and inspiration. I could go on and on. There are so many others. There are so many other experiences from these few days that are worth recounting. But I’ll save them for now. David and I are so filled with gratitude for this organization, this event. What a gift for all three of us.