Oscar-Go

We are so excited to find 1-2 amazing people to work with Oscar. Please submit application materials to sallybbonn@gmail.com if you are interested in applying!

And here is the final installment of Notes From a Pandemic, the mini posts I wrote on social media throughout a portion of the pandemic.

Note: You made need to click on some photos to see them in their original format.

NOTES FROM A PANDEMIC 8/24/21: A few photos from our week away last week on Chautauqua Lake plus a visit to Griffis Sculpture Park. First time sleeping away from our house since November 2019. First vacation in 2 years. Much needed. 1. Family. 2. Laughs. 3. Love. 4. Sunrise last day. 5. Foggy sunrise first day. 6. Griffis Sculpture Park, photo by Oscar. 7. Visit from my mom! 8. Visit from my dad! 9. Silly.

NOTES FROM A PANDEMIC 9/3/2021: Last night we went to the Memorial Art Gallery. Art gallery: a building that has art inside to look at (in case you have forgotten, we practically had). We hadn’t done that in 18 months. Since the pandemic started we have been eating dinner later than we used to, generally around 7pm, sometimes later. Probably because the days take more energy to get through so it takes us longer to get to dinner. We were determined to eat dinner early last night and get out of the house (MAG is open until 9 on Thursdays, and the recent visit to the sculpture park reminded us how vital art—in person, not on a screen—is to our existence). Try as we might, we ate dinner at 7, got to the gallery a little before 8. WE HAD THE PLACE TO OURSELVES. No one else was there. Fantastic Peter Jemison exhibit, and the Rochester Finger Lakes Exhibition is a thoughtful and diverse collection of work. Almost all of the art we looked at was by living artists from western and central New York. INCREDIBLE work. Amazing. One hour. We’ll go back for more. But one hour can make so much difference, any time, but especially in these times. ART MATTERS. (We’ll have to visit RoCo next).

NOTES FROM A PANDEMIC 9/8/2021: Tonight our wonderfully enthusiastic superintendent left a recorded phone message for all the families in the district saying he was SO happy all the kids would be back in person for their first day tomorrow that it feels like all the holidays wrapped up into one! I appreciate the message, genuinely, but tomorrow does not feel like a holiday to us. After 18 months of remote school while the majority of kids in the district were in the hybrid program, the transition back feels massive for Oscar, and for us. There’s plenty he is excited about and I’m sure I’ll post a joyful first day pic/post tomorrow. But the start of this school year is full of a bigger mix of emotions than usual. Not to mention that we are still in the midst of a global pandemic that is raging, and simply sending our kids to school is a risk to their basic health and safety. Extra empathy for those of you whose kids are too young to be vaccinated or live in places where masking and vaxxing is questioned. There is so much we are all excited about, but I thought it worth honoring the ambivalence on the eve of the start of school. I’m sure we’re not alone…

 Abstract art from last week, working title “oscar wuz here.” The loop at the top is part of a figure 8 he made—something he loves to do in the snow. The lines at the bottom are from the lift on his school bus. The scribbles in between are from him positioning himself to back onto the lift mixed with his bus driver’s foot prints. NOTES FROM A PANDEMIC 12/15/21: Being a person is hard. Parenting is hard. Parenting a kid with extra layers of needs is hard. Add a seemingly never-ending global pandemic into a family with multiple people in risk groups and you get…our every day lives these days, that are HARD. We’re tired. Like exhausted. We have to get up at 5:15 every single day to get Oscar out the door to get to 8th grade. And that’s only about 3% of why we’re tired. Oscar has an *amazing* aide at school who assists him with physical tasks he needs help with. There is no trained sub yet this year so if Oscar has to go to the bathroom on a day his aide is out, either David or I leave work to to go to the school. Personnel issues in schools are that bad—we live in an amazing and way over privileged district and it’s December and they haven’t worked this out yet. We have empathy, but our patience is running thin. Some great people are working on it, but… Then there’s the fact that his school has decided in the last couple weeks to loosen some covid protocols—luckily these changes don’t directly impact Oscar, but they do impact the school community. Yes, they really made this decision in the last few weeks when cases are soaring, omicron is imminent, and the holidays are upon us. They have been so smart and thoughtful this entire pandemic, I am mystified (not to mention blood-curdling outraged). TCMS parents: if you are even a little concerned about what is happening at lunch time PLEASE send a note to Kevin McGowan AND the school board, please. Usually by this time of year I’m mustering silly amounts of extra energy to stay up late baking a variety of cookies and delighting in writing holiday cards—this year I’ve got nothing. I’m planning to bake this weekend, I hope I’m excited to do so by then. I am thankful every single day for David and Oscar, and for my parents—our bubble. Yes, we are absolutely still in a bubble. I don’t know how any of us would be getting through these days without each other. I say all of this simply to be real, to be a bridge from one human to another. I know many are struggling right now, in all kinds of different ways. We can be together in this. One small magic: flour and water. A few weeks ago I made my first sourdough starter, and after 15 + years of baking bread pretty regularly, I made my first loaf of sourdough last weekend. It was challenging and fun and nervewracking and delicious and far from perfect and there will be more loaves and more stories. Flour and water. (and of course salt). That’s it.

NOTES FROM A PANDEMIC 2/23/22: I just dropped Oscar off at a friend’s house to hang out with a small group of friends (masked) for the first time in over two years. He has been to a few outdoor gatherings, he has hosted a handful, as well as had individual friends over (all masked but one who we welcomed into our “bubble” after they were both vaccinated), not to mention that he has spent countless hours outdoors or online with individual friends. And during those couple weeks in 2021—post-vaccine but pre-Delta—he did have friends over unmasked. I am sitting now, with my tea and notebook, in the quiet. In my cozy little office at home in what we have come to call “The Warm Room” this past winter because with the door closed it becomes by far the toastiest spot in our house. I am stunned. I teared up just a little—with gratitude—on my short drive home. For two reasons. What barriers for socialization have been in place these last two years. But also, because of the barriers of accessibility, I can count on one hand, maybe two but not with all the fingers, the total number of times we have ever dropped Oscar off at a friend’s house to stay, indoors, without us. I hope today is an opening, not just in the wall of the pandemic that we have been living behind, but also a beam of light shining on future opportunities for Oscar’s social independence. He has so much to give—and so much to gain—by spending time in other people’s homes, experiencing the culture of different families. This afternoon, for him, I am blissful.

NOTES FROM A PANDEMIC, 4/1/2022: I went up to Durand, to Lake Ontario, which is something for some reason that I rarely do. I wasn’t sure what was pulling me there today, what I was looking for. Once I got there it was obvious: something bigger and louder and calmer than the synapses firing in my head. As I stared out toward the horizon I thought, “There’s a whole other country on the other side of that water.”

And that concludes the series of posts I called “NOTES FROM A PANDEMIC.”

Finally updating with more Notes from a Pandemic. These are mini blog posts I posted on Instagram @essbeebe and Facebook throughout the pandemic.

Note: You made need to click on some photos to see them in their original format.

QUESTIONS FROM A PANDEMIC 12/3/2020: What strategies, ideas, innovations are you finding to connect and collaborate with your coworkers while working remotely? I work with a very small tight-knit staff. We’re like a second family to one another. Our office space is open and communal—it’s easy to call across the room or pop our heads around the corner to ask each other questions, share ideas, tell stories. At work I’m a collaborator. I do my best work when ideas are being shared, looked at from different angles, when there is shared laughter, frustration, problem solving. Innovation comes from human interaction, for me. We have been working fully remotely since March. Now I sit in a room alone in my house in front of a screen. We have scheduled Zoom meetings with agendas, but there is little spontaneity. I have started holding weekly tea time where I open a Zoom for half an hour and people can pop in to catch up socially, which is amazing, but when people aren’t available for a few weeks in a row, I might go a month—or a few!—without having a conversation with some of the people I’m used to talking with nearly every day. I am lonely, and I am making decisions about my work in a vacuum—unless I have enough specific questions to warrant scheduling a Zoom or a phone call. What struggles are you finding in working remotely? What creative solutions are you implementing?

NOTES FROM A PANDEMIC 2/27/2021: I have learned over time that it is not only possible, but sometimes necessary, to hold two or more feelings that may appear in opposition with one another, at once. I am smacking up against that on so many fronts right now, and it leaves me confused as to how to answer the question, “How are you?” I love that I can hear about details from Oscar’s day throughout the school day, that we can eat lunch together or take a break to read together or take a walk, but I am suffocating from having him in my orbit 24/7. I love the flexibility and comfort and ease of working from home, but I am starving for interaction and collaboration with my colleagues. I am grateful we order groceries, and only every two weeks, that with a high risk kiddo we have that option, that we can squeeze that into any day versus it being an event every weekend, but I miss running into people and the spontaneity of seeing something on the shelf to inspire a new idea in cooking. I love that I cannot fill my calendar up with events, that in theory there is more down time, but I miss the way the change of scenery and the energy of being in a room with other people experiencing something together shifts my being. I don’t know if it’s having felt stuck inside for the last few months, or the impending one-year anniversary of quarantine, or the possible (one never knows in upstate New York) change of seasons coming that provokes a certain restlessness every year, or if it’s just where I am, but these are just a few of the push/pull, dark/light feelings I seem to be bumping up against on a nearly daily basis. I took the entire month of January off social media, and didn’t feel especially compelled to return in February. I missed all of you, your news, your insights. But I miss the spontaneity of conversation, unexpected human interaction. The scroll is endless—I’ve been reading books instead. Genuine, real-time human connection (outside of my own bubble) is rare and fleeting in these times. I’ve gotten to the point where I often forget whom I have said what to because the location of nearly every conversation is the same. There is little context to spur memory. I see people’s hope as the vaccination process picks up steam, and I feel a little bit of that as well. But until Oscar can get vaccinated, there will be no letting up of our lock-down. And there is no telling when a vaccine might be available for kids. Warmer days are coming. Being outside will become more compelling, which will expand my own living environment, and will also start to reopen the social circle of gathering around a fire. Remembering to make space for all the feelings, no matter how contradictory they may seem, will definitely serve me well as we continue forward in the unknown.

NOTES FROM A PANDEMIC 3/13/2021: One year. March 13, 2020 was the last time Oscar went into school, the last time David went into work for several months, the last day I went grocery shopping inside a store. The long wall where the toilet paper usually was, was bare. A single pallet on the floor had a small tower of TP that people were hungrily grabbing at, I skipped it, telling myself I was better than that (ha!). I “stocked up” on canned goods and other nonperishables, thinking I set us up well for a few weeks. I had no idea what instacart really was or when or where we might be getting our next groceries. I rationed our snack food carefully, which was a challenge with everyone home and anxious. News was changing by the hour. Thursday that week I knew things were pretty serious but couldn’t envision what kind of impact it might have on us. By later in the day Friday I knew we wouldn’t be sending Oscar to school on Monday, even if it was open. By Saturday schools had been declared closed. That Monday, the 16th, I called Oscar’s aqua therapy to make sure they weren’t expecting him, and when they were, I said, “Oh No, Oscar will not be going ANYWHERE for the next TWO WEEKS.” I have remembered voicing that line so many times over the last year, a year in which Oscar has still not been back to aqua therapy. Two weeks was as far into the future as we could think at that time, and even that far was a stretch. There was such a moment-to-moment intensity of uncertainty in those days and weeks. Early on we were given the advice that it was important to have something to look forward to, even something small. And so as I remember the “lasts” from a year ago (a meal out, going into work, gathering with loved ones indoors, an art gallery visit) I think of the early weeks when we watched episodes of Abstract, an art & design documentary, during or after dinner a couple nights a week; daily walks as a family when we were all home together (and then at one point we got scared that we might catch covid just by walking in our not-busy-at-all neighborhood). I think of how we have learned that video gatherings can fulfill a deep need to connect… I think of how, though I used to make it a couple times a month, I have made pizza every single Friday night in the last year (with very few exceptions when I have made it on Saturday instead), and how every single week all three of us have looked forward to that—it has become part of the rhythm of our week. These are but a very few details specific to our family amidst this pandemic that is shaping our lives, our histories, our country, our world in ways we can only begin to glimpse now, while we’re all still in the midst of it. Across the globe we all have details, stories, griefs, memories, delights, devastations, surprises, learnings from this time. Sending love out there to all of you as we pass through this milestone together.

NOTES FROM A PANDEMIC 4/21/21: Second dose done. I was unexpectedly emotional driving to my first dose. And when I thanked the woman who gave me my second shot for her hard work and long hours, she said it’s an honor, and I teared up again. Hope we will keep gaining momentum, and that a vaccine will be approved for teens and kids before too long.

NOTES FROM A PANDEMIC 5/16/2021: Oscar got his first dose of the Pfizer vaccine yesterday!!!!!!!! Our pediatrician’s office called to schedule the appointment on Tuesday, before they announced the clinic to the full practice. They must have called all their high risk patients. I got choked up on the phone and could hardly speak to finish the call. When we arrived amid the hustle and bustle of a well-staffed, well-attended vaccine clinic, Oscar’s pediatrician noticed us and came right to the door to ask if we’d rather have her come to our van to give him the shot so he didn’t have to come inside where there was a waiting room full of (socially distanced, masked) people. We ultimately decided to go inside, and she walked us straight to the back and into a room to avoid any unnecessary exposure. And the nursing staff put us in a private waiting area after the vaccine. (We have the best pediatrician! We already knew that, but this reinforced it that much more). And yes I got choked up again at the appointment. We are doing our part in this historic moment to reduce the spread. This pandemic is far from over, and once Oscar has had his second vaccine and waited the 2 weeks, it will still not be over. But maybe we will be able to loosen just a bit the white-knuckled grasp of precautions we’ve been holding onto for over 14 months. Maybe there will be a few hugs… (The second photo is to show that we were having too much fun yesterday to take the time to post about Oscar’s vaccine…).

NOTES FROM A PANDEMIC 6/18/2021: Our bubble. Tomorrow marks two weeks since Oscar got his second covid shot. For the first 8 months of the pandemic, it was just the three of us. At first, when it was still cold, one of my parents would come by and we’d take walks, us on one side of the street, them on the other. As we learned more and got used to pandemic life we’d gather in our yard, chairs spaced more than 6 feet apart with family or friends. Summer was okay because we could be outside so much. But as summer drew to a close I couldn’t bear the thought of my parents being alone—they each live alone, and had been completely isolated this whole time. For eight months neither of them had had a hug. We were all basically taking all the same precautions, meaning none of us was going anywhere, ever, except David going to work in an office that was diligent about precautions. We consulted many medical providers and we agonized over the decision. I didn’t post about it back in November when we first made the decision because the holidays were approaching and people were taking risks that scared me and I didn’t want to contribute to a narrative that could have supported risky decisions. I am filled with immense gratitude that we collectively decided to become a pandemic bubble. The quick visits, the long meals, the laughs, the holidays, the hugs. They mean so much. And as much has it has meant to me to be able to be with my parents these last 7 months, it means that much more to me that they didn’t have to be alone. One of my favorite memories from this time was Thanksgiving—the first time they had spent Thanksgiving together in over 40 years, they sat at our kitchen table as David and I finished preparing food, and they reminisced about their Vietnam war protest days in the 70’s, while Oscar listened with rapt attention. Over these many months, Oscar got special time with each of his grandparents in a way that may not have happened if we were not living through a pandemic. Tomorrow we will begin to open our bubble. We will hug some people we haven’t hugged in over 15 months. We will begin to welcome some loved ones into our home again. We don’t know exactly what all of this will look like because Oscar’s two doctors we trust the most gave almost opposite advice about what we can do now that he will be fully vaccinated—and both had very sound reasoning behind their suggestions. I do know that once tomorrow arrives, we will take this slowly. Today, I will focus on the gratitude I have for my two amazing parents Valerie McPherson and Bob Bonn, and the way we have been able to live through this time together.

NOTES FROM A PANDEMIC 7/12/21: This is my 16th summer welcoming kids and teens into Writers & Books’ SummerWrite literary camps. For fourteen of those years I stood at the door or sat at the sign-in table greeting new participants or catching up with families I hadn’t seen since the previous summer. Today, like last summer, I sat alone on my back porch as the Zoom sessions started. My first three years I worked only in the summers coordinating the day-to-day logistics, but since 2009/10 I have spent every winter planning these camps, every spring promoting and coordinating and preparing the camps, and every summer making sure they ran smoothly. I don’t think I ever imagined I’d work in one place for so long. Creating and holding and curating the space for kids to express themselves is one hell of an awesome job. My favorite part of today? Zooming into all the camps to say hello and seeing the faces of the incredible teaching artists, dedicated apprentices, and creative campers.

NOTES FROM A PANDEMIC 7/26/21: Hogwarts via Floom Network, version 2.0. Even remotely, it’s my favorite work week of the year. The magic is real.

NOTES FROM A PANDEMIC 7/29/21: This morning I went to Wegmans for the first time since March 13, 2020. For the past 16 months we have been sharing Instacart with my dad, ordering once every two weeks, on weekdays when the store would be less busy. I figured if we were asking someone else to do our grocery shopping for us for health and safety reasons we shouldn’t be asking them to go in at the busiest—and therefore most dangerous—times. Every time I thanked the shoppers through notes and messages, in person when they delivered the groceries, and with generous tips. My dad would come to our garage, and then eventually into our house, to pick up his groceries. When Oscar was fully vaccinated I couldn’t wait to go to Trader Joe’s, and we’ve been doing the bulk of our shopping there since. A week or two ago my dad went into Wegmans for the first time, on a weekday morning. He sent me this selfie before he went in, which pretty much summed up my feelings about the possibility of going in. Today, at 6:45 am I sent him this selfie just before I went in. And yes I felt just as terrified as my face looks. It was so early, I’m sure it was safe, though I’m still double masking at places I deem to be higher risk. It was overwhelming. We live 2 miles from this store—THE Wegmans national flagship store. So that is where we had been used to shopping. I felt bombarded seeing the produce section that in and of itself is larger than some entire grocery stores. The massive aisles with vast varieties of tea, hand soap, pasta, sparkling water, countless brands and types of canned tomatoes all left me feeling unsettled. Here we have been living through a global pandemic, millions of people have died worldwide, we’ve been living sequestered, trying to stay alive. This store felt troublingly decadent, unnecessarily excessive. I’m sure I’ll get used to grocery shopping again, it will become that regular thing we just do, but today brought me a new perspective, left me contemplating…

NEEDED: Personal Care Assistant, position posted October 30, 2022

We are looking for a couple aides who can work with Oscar, 2-10 hours/week. No previous experience necessary!  Check out our ad below, with more info below that. To apply, please send resume and note explaining why you would be a good fit to be Oscar’s aide, and why you want this job to Sally, David, and Oscar at sallybbonn@gmail.com.

The Basic Info:

• We are looking to fill 2 positions immediately, assisting Oscar:

•  a few evenings/week, approximately 7:00-9:30pm, Su-Th
• a few mornings/week, 5:45-7:00am
• occasional weekend or after school shifts might become available as well

• Requirements:

• 18YO+
• non-smoker
• proof of COVID vaccine
• able to lift/maneuver 80 lbs.
• willing to wear KN95 mask, as requested

• Pay: $15.20/hour

• Please read ad below for important information about Oscar and the job responsibilities.

READ THIS AD FOR MORE (& IMPORTANT) DETAILS:

What is a personal care aide or assistant? you might ask. It’s someone who can help Oscar do the things a typical teen would do for themselves, for example getting up and getting dressed and ready for the day or getting ready for bed at night. An aide allows Oscar much-needed independence, and allows his parents a much-needed break in his daily care.

This could be a great position for a nursing student or a PT or OT student not only because the experience someone will gain with things like transfers and basic daily care, along with becoming familiar with the range of equipment Oscar uses (power wheelchair, stander, BiPAP, cough assist, TLSO and KAFO bracing, etc), but also because Oscar is a remarkable self-advocate. He is very comfortable in his skin, he is filled with disability pride, and can offer a valuable perspective on how ordinary living with a disability can be, along with perspective on the kinds of barriers (lack of accessibility, sure, but also ableism) he is faced with regularly.

We might be a little biased, but he’s also really fun to hang around with!

All of that said, it is NOT necessary to have any background in or aspirations toward a medically-related field to work with Oscar.

You can get a little more of a sense of who Oscar is by checking out his interview about disability rights on Connections with Evan Dawson from October, 2019, as well as his feature in CITY newspaper in December of 2019. Of course these are almost 3 years old, but you’ll get an idea of his advocacy skills!