Oscar-Go

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!

Here is the next installment of my mini-blogging series that I have been posting on Instagram and Facebook since May.

NOTES FROM A PANDEMIC 7/27/2020: It’s Hogwarts week at Writers & Books. This is one of my favorite weeks of the year. However, due to an unusual illness impacting wizarding and muggle families alike we were unable to be AT Hogwarts, but we were able to work with Arthur Weasley to link the Floo Network—head only, to Zoom technology, creating the Floom Network, so students could attend their classes at a safe distance without having to keep their heads in the fireplace for the duration of their lessons. Dumbledore even assured the students that they needn’t worry that Olivander’s was closed and some of them may not have been able to get a wand—he reminded them that wizards channel the magic through themselves and that even wands resembling a stick or pencil would be sufficient for their magic. We had to break ties with the Daily Prophet this year because it is no longer a reliable source of information. Instead the students are working with Luna and Pandora Lovegood, learning about journalistic integrity, and producing an issue of the Daily Quibbler each day this week. One of the stories in today’s Quibbler is by a student who has attended Hogwarts many years, and indicated that this is the first place he felt accepted as a trans student. (And yes, some of our groups are talking about what it means when an author whose work you admire so much does something so completely against the core of your values). Other students wrote articles about self-care, as well as sightings of a three-headed dog, and new flavors of Bertie Botts beans. Many among our staff and professors questioned how we could possibly pull this camp off as a virtual experience. The magic is real. I am so moved by the incredible dedication and work of my staff and professors and prefects to pull this off. The way a group of kids, teens, and adults can rally together and explore a piece of literature from so many angles, find the metaphor that reflects their own experience, find the joy and the magic. My heart is full.

NOTES FROM A PANDEMIC 8/13/2020: In a another world we were supposed to be at the ocean this week, but instead we took a staycation last week. I stayed away from social media and the news, and pretty much screens altogether. We truly unplugged from our regular day-to-day. I read a lot. We ate our favorite ice creams every day. And lots of other delicious food we cooked. We took many day trips to places mostly 45 minutes to an hour from our house. We swam a little, we breathed a lot of fresh air, we saw a few special people. I really missed the vacating part of vacation, and especially the ocean (and I acknowledge all the privilege wrapped up in what our plans were supposed to be and what they turned out to be and how “missing vacation” is so low on the list of things wrong in the world). However, this time renewed my understanding of what an incredibly beautiful part of the country we live in. We ventured out mostly in the Finger Lakes region, but also along Lake Ontario. And we found some really special spots. We could have mini, one-day vacations right here, practically in our own backyard all the time. Grateful for the time, the land and water, and these people I love.

NOTES FROM A PANDEMIC 8/19/2020: Yesterday the school psychologist, counselor, vice principal, and brand new principal came to our front yard for a meeting. Not even a formal meeting to lay the groundwork for Oscar’s plan for 7th grade (because just weeks away from starting they are still determining key elements of how the school year will look—my heart goes out to administrators and educators right now!). More of a check-in. We are all so grateful for this team of people who were nothing short of amazing in Oscar’s transition to middle school last year. Oscar will be starting his 7th grade year fully remote. Our district offered the option of hybrid (2 days/week in person, 3 days at home) or full remote. For us, we knew we had to keep Oscar home. We are hopeful for real connection, as 2/3 of learning will be happening with other remote learners and teachers through Zoom. These are strange times, and I firmly believe the most important learning our kids are doing in these times is not academic at all, but learning more about being human when our perceptions of how things should be are challenged.

NOTES FROM A PANDEMIC 9/10/2020: First, I have to say, it is hard for me to think of posting anything from my personal life on social media because of the events in Rochester, #justicefordanielprude #BlackLivesMatter, over the last week (and months). But I do want to take a moment to acknowledge this momentous occasion in our family: First day of SEVENTH grade. Full remote. So many unknowns heading into this school year left us all with some frayed nerves, and last night when we could have been taking some deep breaths, we found ourselves yelling at one another (not a proud moment, but a human one). Oscar’s first day went better than any of us could have imagined, zooming with all of his teachers today (each class will have approximately 3 zoom classes per week with 2 days of independent activities). I tried to give Oscar as much independence and privacy as I could, but partway through first period he called out to me, “My ELA teacher is AWESOME!” Day one she was already strategizing to get the kids socially engaged, and made it clear she’d be there to support them in connecting with one another, both in and outside of class. Oscar has a free period in the middle of the morning and we took a long walk together—finally, a way to get much needed recess in middle school! At the end of the day Oscar said, “That felt like school!” In a positive way, in contrast to “crisis education” in the spring. And at the end of the day he hung out outside with a close friend who is also doing all remote school. I have no doubt there will be many challenges this school year, some I can guess now, others will catch us off-guard. But right now I am feeling gratitude for how well things started—with a group of teachers who just got their class rosters yesterday. Nothing about this is ideal—hell we’re in the midst of a global pandemic—but I do believe there will be some things to embrace along the way.

NOTES FROM A PANDEMIC 9/17/2020: Look who I got to have as an office mate today! The back porch has been my office for the last 4 months (which has been such a saving grace), and today David worked across the table from me. He is now working from home one day a week. We were so happy to have him in our office/school!

NOTES FROM A PANDEMIC 10/3/2020: Since Oscar is doing school fully remotely I have set up his bell schedule as a series of alarms on my phone. Wednesday follows a different schedule, hence the great number of alarms. Often one Zoom ends and he simply jumps on to the next, but when he has an asynchronous class sandwiched between two Zooms or one teacher happens to end class a little early, it’s easy for him to get caught up and be late to his next class. This has been a great tool. Not that I love hearing that loud alarm every 40 minutes, soon I’ll probably start hearing it in my sleep! It’s important to me to leave Oscar to his own devices as much has possible while he is “in” school. He would have that independence if he were there in person, so he wears a headset and I stay out of the room the vast majority of the time. But he is also used to having friends sitting next to him that he can ask for help if he can’t reach something, and an awesome aide who would help him with anything his friends couldn’t. So I do have to be on alert to be that friend or aide all day, and the reality is I never get a moment where my attention isn’t divided (except on Thursdays, now that David is working from home on Thursdays!). Some teachers tend to let the kids out of class a minute or two late, and so with a 3-minute passing period there is hardly time to click on the next Zoom link and get it to load before the next class starts. Oscar and his friends he has back-to-back classes with have started a game, “Race you to the next class,” to see who can log out of one and into the next faster, which I love! All of his teachers are doing a great job presenting material in this most unusual format. Some teachers are being incredibly sensitive and thoughtful toward this all-remote learning experience. One is giving no homework whatsoever, he understands that by the end of the school day the kids have had more than enough screen time. And several of his teachers are providing time during class for kids to engage socially with each other, to chit chat the way they would be if they were in the school building. And at least one is working on creating social opportunities for groups pf kids during lunch, and other down times. This is a weird year, and while we’re in a rhythm with some of it, other parts may never have a true rhythm.

NOTES FROM A PANDEMIC 10/6/2020: Two remarkable things happened today, both captured in this image. 1. Someone outside of the three of us (other than a plumber) came into our house today for the first time in nearly 7 months. 2. Oscar had in-person PT (vs video-conference) for the first time in nearly 7 months. I love the look of delight and surprise on both their faces. Oscar will continue to receive most of his PT via Zoom, 3x/week, but Heather, who Oscar has been working with since he was in kindergarten, and in normal times comes to our house about once a month, will resume her home visits with us—as long as state guidelines continue to allow it and as long as COVID numbers in our county remain low. It was a good bit of relief and reassurance to have her expertise in the mix again, to have a PT actually lay hands on Oscar.

NOTES FROM A PANDEMIC 10/12/2020 (photos from 10/10): Saturday Oscar turned 12. How do you celebrate a birthday during a pandemic? You let the birthday kid get woken up with honking horns outside his window because you are hanging a sign on the tree in front of your house that says, “Honk for Oscar’s Birthday.” Your neighbors leave a homemade banner in plain view right outside your front door. You thank your lucky stars for warm weather in October, with a good dose of sun—plus plenty of wind and a touch of rain to keep it interesting. You arrange for a surprise bike and car parade—which turned out to be tiny, but so perfect because of the very special people who showed up for it. You have cake and presents in the front yard with grandparents, aunt, uncle, cousin. You have three close friends over for a fire, but prepare the garage as a back-up because of the possible threat of rain, and end up partying like a wild, joy-filled crew of 12 year-olds, mostly in the garage.

The next day Oscar said he got some great presents, but the best present was to be able to be together with his three dear friends. He said it was the best birthday he’s ever had.

  
NOTES FROM A PANDEMIC 10/16/2020: Ten years ago today we moved into our house. The living room is still my favorite room. Never before have I lived somewhere with such wide open space, such incredible natural light. Throughout the year after we moved in we said out loud (all three of us) at least a few times a week, “I love this house!” We had a lot of help to be able to be in this house. Dear friends held a benefit for us not long after we realized we would have to move to an accessible home. It was wildly successful and raised a down payment for us to be able to buy this house. I still have moments where I am stirred with a visceral vibration of gratitude for the unbelievable generosity of family, friends, acquaintances, and strangers that made it possible for us to be in this house. Including the friends and family who spent hours and hours in the weeks before we moved in helping paint, tear up carpet, re-plaster walls, clean, etc etc. Our home is an embodiment of “It takes a village…” Thank you thank you thank you to everyone who helped get us here. After ten years I still feel like I have not adequately expressed my gratitude. And who ever could have imagined that ten years later this amazing living room would also become Oscar’s 7th grade classroom? That we would spend the amount of concentrated time at home we have in 2020? We are getting to know and love this home even more, re-envisioning how the different spaces can be used and lived in. Like so many families right now, we are exhausted, our patience is thin, we are feeling the weight of the looming changes in weather which will reduce our ability to socially engage, we have Zoom fatigue and we are sick of screens. But we are so grateful we have an amazing home to be holed up in…

NOTES FROM A PANDEMIC 10/25/2020: We voted today. I cried while filling out my ballot. At first I said I’d never cried while voting before. Then I realized I probably cried 4 years ago, from a feeling of empowerment. Today I cried because I finally understand that the results of an election can have life or death consequences. (Also, aside from doctors appointments—and voting in the primary for me—this is the only time Oscar and I have been indoors anywhere away from home since March).

Happy Halloween! Original artwork by Oscar.

NOTES FROM A PANDEMIC 11/15/2020: I made caramelized onion, pear, and Brie pizza for dinner tonight because sometimes when you’re 8 months into a global pandemic with no clear end in sight and you’re home all the time, and I mean ALL the time, why not a little decadence on a Sunday night for no particular reason?

NOTES FROM A PANDEMIC 11/23/2020: Quote of the day came from Oscar at 7:37 this morning, “Isn’t it great that I’m not, like, three during the pandemic, so you can cuss as much as you want?”

I have been having a hard time writing since quarantine started over 4 months ago. But, on Mother’s Day I inadvertently started a new mini-blog series that I have been posting on Facebook and Instagram. I figure it would be good to archive here, and share with those of you who are not on social media. Here is the first two months of what I am calling Notes from a Pandemic.

May 10, 2020

Mother’s Day 2020: After dinner my 11.5 year-old asked to sit on my lap. For breakfast Oscar and David made cheddar scallion cornmeal biscuits, served with fresh-squeezed orange juice, an egg, fresh blueberries, and two little vases of flowers from our yard. Before that I lay in bed reading, for a long time, something I have not had much luck doing lately. It was wonderful. There was crying today. And a little bit of yelling. And a video visit with my mom. David hit it out of the park for dinner, too—there was carmelized onion, rosemary, and potato galettes for dinner, with collard greens sautéed in garlic and ginger, and last night’s red lentils. And a blueberry galette for dessert. We all watched the last two episodes of Raising Dion together on the couch in the late morning/early afternoon, and then stayed on the couch. I wrote a tiny bit, another thing I have not had much luck doing lately. I texted a few moms I love. I was not crazy exhausted because I was not up until 1:00 am last night, like I have been the last 4 Mother’s Day Eves, because there was no Listen to Your Mother show last night, and no after party at Nox, our local literary-themed bar. I read emails from a few of the women who took my Writing Motherhood class yesterday, the first class I have taught by Zoom, and the first writing workshop I have taught for adults in a couple of years. It was a gift. This kid, he is my heart. Being a mother is my favorite. I have learned and grown exponentially in the last 11.5 years. I love this kid with my whole heart. The three of us talked for over an hour beyond bedtime in Oscar’s room tonight. A family heart-to-heart. There were more tears. This is hard, these times. And there are so many ways we have it easy. And yet. This is so hard. We get through this together. Together as a family. And all of us together apart. Thanks to Gina Perri Cannady for her post today that reminded me that all us mothers out here, we’re holding each other up. It is reading the little tidbits of your days here on Facebook, or in your blogs, or quarantine memes, or stunning literary essays in high profile magazines that is getting me through. The power of narrative is real. Your words matter. They land somewhere and have an impact. I am grateful for all the mothers out there. And I’m going to try more often to put words together myself, so maybe we all will feel a little less alone as we live this life alone, together.

NOTES FROM A PANDEMIC 5/14/20: David and I both agreed tonight that for the most part we don’t mind being home all the time. We like home. We like not having to rush around to places and obligations and responsibilities (granted we have to rush into the next room to log onto the next meeting, etc, but it’s more laid back at home). I got 50 lbs of bread flour in the mail this week (sharing half with a friend). This photo shows the first thing I made with it, a pain de campagne, it was fun to make this fancy shape. I have found comfort and gratitude in putting flour and water and yeast and salt together to make something nourishing and delicious for about the past 15 years, this is not a new pastime for me, but I am grateful to have the time at home to dedicate to it. I decided today that all the money we’re saving by not buying gas, we should be spending on whiskey and rum. It’s another kind of fuel. And I’m not usually that much of a drinker. Oscar has a friend who he has sometimes been eating dinner with—through a screen—it’s awesome. So David and I had dinner together tonight, not a date, but just the two of us in the kitchen, Oscar in his room. I’m trying to practice putting words together because maybe if I practice enough I’ll remember how to do it without having to try really really hard. David has to go back to work in June, which is a thing that has been hanging over this whole quarantine, we knew eventually he’d have to go back. We don’t know yet what it will mean for us. We are researching, and we know there are no real answers, so we’ll have to make decisions based on best guesses. None of us are looking forward to this. As hard, and stressful, and weird as these weeks have been, we are so grateful for this time together as a family.

NOTES FROM A PANDEMIC 5/21/20: “Relatively, super ok.” This is what I texted to my dear cousin who is like my little brother several weeks ago when he checked in on us, as we’ve been checking in on each other throughout these times. It was an honest response in the moment, I didn’t think much of it, but it has become his go-to answer of how he and his family are. And indeed it sums up how we as a family are in these times. We are so grateful we have each other, our home, food, jobs, heath care, our health (knock on wood). Some days and some moments are hard, scary, overwhelming, debilitating. Some days and some moments are filled with laughter, gratitude, peace, raucous dance parties, meaningful connection despite isolation. Yesterday we got in the van and took a walk outside of our neighborhood, something we have barely done. The sky was finally blue. We saw only a dozen other people on the path we were on, half of whom were wearing masks. Sometimes we waved and smiled—hopefully it showed in our eyes. Every time, we veered away to the edge of the path. Sometimes the other person did too. What a world right now that this is how we care for each other, show appreciation, to move away from a stranger on a simple walk. Here in the northern reaches the trees are finally starting to burst with chartreuse, and blossoms are opening up. And we continue to be, relatively, super ok.

NOTES FROM A PANDEMIC 5/25/20: My Mom’s birthday. We had a social distance brunch. We cooked, first time we’ve shared food with anyone in 2.5 months. It was a beautiful day to sit outside, soaking up time with my amazing mom. Gifts in the time of COVID—I made her a mask using some special fabric I found among my sewing things in the basement recently. The fabric is from when I was a kid, and she had terrible tendonitis, and was told she had to wear a sling (actually she was told she had to wear two, go figure!). She wanted no part of a boring clinical looking sling, so bought this boldly colored fabric with dancers, we both loved the fabric so much, and somehow I ended up with it and just rediscovered it. AND she presented US with a gift. My mom, who is a master knitter who always has several projects going, and who has been knitting for 65 years, during this pandemic has rekindled her love of cross-stitch. She cross-stitched our family to commemorate this time! What a remarkable woman. Happy Birthday Mom. We love you!!!

(photo credit: Oscar)
NOTES FROM A PANDEMIC 6/2/2020: Yesterday we took a break from it all. We are in the midst of a global pandemic, and our country is on fire. We drove out of our city to a tiny little gravel parking lot and walked on this path for a couple hours, where we saw almost no one else. The path meandered mostly through green spaces, and also over this old railroad bridge. And Oscar asked to take our photo, and directed us to take off our masks, and move more into the light. It was so simple and so endearing. Yesterday also marked the last day that David was home, as he had to go back to work today. We have had two and a half months with the three of us being home together 24/7. There is plenty that has not been easy about this time, but what a gift, the time together. Never before have we had that amount of uninterrupted time together, and it’s quite possible that we never will again. For some of our walk we were quiet, and listened. And for some of our walk we talked, about the heavy feeling we are all carrying related to the events of the past week in this country. Over the weekend Oscar asked, “How did racism start in the first place?” And that’s when I decided that this summer he and I should read Stamped: Racism, Antiracism, and You: A Remix of the National Book Award-winning Stamped from the Beginning by Ibram X. Kendi and Jason Reynolds. Apparently a lot of other people had that idea, too, because when I tried to order it, it was on backorder. I’m glad. We can be patient. There are too many thoughts and feelings running through me to even begin to put a sliver of them down into words. We are talking, everyday, as a family. About racism, about the shameful history of our country, about our white privilege, and how we can use it to do better. One thing I know for sure, the three of us will keep learning. We’re committed to it.

NOTES FROM A PANDEMIC 6/14/2020: Since David went back to work two weeks ago, Oscar and I have been late to every single Zoom PT session. Balancing Oscar’s most basic needs, plus his appointments, plus a hint of school (we’ve almost completely given up) as it winds down, plus any kind of mother/son connection whatsoever with my very busy work-from-home schedule is super challenging.

Despite the fact that I grew up with two hippie-era parents who have been fighting for racial justice for decades, marching in the streets (getting arrested), calling and writing and showing up to engage politicians, enacting policy change within their own workplaces, and so much more—half of which I may never even know, despite the fact that they have taught me so much about what is right and what is wrong the world, it is really only within the last 5-10 years that I have really been able to start to understand my own white privilege. My own complicit part in racism. And I know I have so much more to learn. And I’m seeing this in my communities—white folk just starting to understand what their privilege means, or not yet being able to see it at all. I am hearing stories of my friends and family having conversations for the first time with their friends and family about racism, about white privilege, about needed change. And I’m so grateful that it seems like the door is being cracked open just a little more, that us white folk are learning just a little bit more collectively, and that’s how change can happen. But just a little isn’t enough. AND IT SHOULDN’T TAKE ANOTHER BLACK MAN BEING MURDERED BY A POLICE OFFICER TO MAKE CHANGE HAPPEN. When will the collective white voice start trusting the collective Black voice? White people have to stop claiming that they know more about Black experience than Black people do. That’s racism.

We were supposed to be at the national SMA conference right now, today would have been the last of the 4 days. We’ve missed it the last 2 years and were so looking forward to going. I miss the community of people, our “mainland” as David calls it and I’ve written about before. We canceled our vacation this summer, too. Knowing we were going to be spending mostly all of our time at home this summer, we decided to get a fire pit and some new chairs for our yard. I am so grateful. Just two fires in, I can see how good this is going to be on so many levels. The quiet of sitting outside under the night sky, flames licking at the wind, the wood crackling, the smell in the air. There is something so simple and so almost primeval about sitting around a fire. It brought me a deep sense of peace. A quieting of the mind that is always buzzing these days—with the news, with work, with parenting—all simultaneously. And at our second fire, one of Oscar’s closest friends who lives around the corner joined us (with mask and at a safe distance) and we talked and talked, the four of us, mostly about Radiohead and police brutality, but a little about online school and silly things that made us all laugh, too. It was pure joy to welcome him into the fold—I miss Oscar’s friends as much as I miss my own, and this can be a way we can gather.

Gather. Gather community. Gather against injustice. Gather thoughts and feelings. Gather quiet. Gather laughter. Gather words on a paper or screen. Gather love. Let’s gather, ok?

NOTES FROM A PANDEMIC 6/15/20: I had my first in-person work meeting in three months! My two incredible SummerWrite coordinators came and sat in my front yard so we could work on planning our staff training (which will take place on Zoom). What joy!

NOTES FROM A PANDEMIC 6/23/20: Today I set foot in a building that is not my own home for the first time in three months, in order to exercise my right to vote. I applied for an absentee ballot, but it never arrived. So I did what I had to do.

NOTES FROM A PANDEMIC 7/3/2020: I don’t take photos of the meltdowns. I take photos of the melting ice cream we eat after we move past them. I remember when I was a kid my mom said people asked her why all the photos of me were smiling, why didn’t she have any photos of me crying, and her reply was that when I was crying she was engaging with me, comforting me, finding out what was going on, and parenting me. Without ever having been asked that question myself, I realize I am the same way. When we’re in the mess together, we’re in the mess together, not documenting it. This is a photo from earlier this week, not too long after we both had a meltdown. A version of a meltdown one or both of us has at least once or twice a week because working and parenting simultaneously is hard, being 11 and needing to rely on someone else for a bunch of your physical needs (that someone else who during the day is only your mom who is working, and her own physical strength is not keeping up great with your growing body) is hard. If you haven’t, please read Deb Perelman’s (of Smitten Kitchen!) piece in the New York Times from yesterday, “In the Covid-19 Economy You Can Have a Kid or a Job. You Can’t Have Both.” And the thing is, my boss is AMAZING. She gets it. She’s super flexible and accommodating. And so do my two summer coordinators. Amazing humans. And David is THE BEST. He gets it more than any dad I know. And it’s still hard. And it will be. And that’s simply the world we are living in right now in a global pandemic. And we are the lucky ones. I’ve said it before, I’ll say it again. We have jobs. We have health insurance. We have our health (knock on wood). We have food and shelter. A really nice shelter, in fact, that I still don’t mind being “stuck” in. And we have each other. It’s only been 3.5 months. And Covid is going no where, the numbers are making that clear. And we’re not going anywhere either. We’ll stay home and take every precaution we have to for as long as it takes. Oscar and I like to say that ice cream runs in the Bonn blood, and there are several others in the extended Bonn family that would agree with us. And we’re ice cream snobs. The homemade ice cream at Pittsford Dairy is our favorite. Oscar and I can often be found there once a week (or more) during the summer. So all along my dad has been getting us containers of Pittsford Dairy Ice Cream, curbside, and this week we ordered cones in our grocery order and we made our own at-home Dairy experience. It was the perfect antidote to a meltdown, and we’ll be doing this regularly. The little things. Whatever it takes to stay sane. To stay safe. To try to keep the world around us safe.

NOTES FROM A PANDEMIC 7/5/2020: 168 years ago today, just a few miles from our home, Frederick Douglass gave one of his most significant speeches, “What to a Slave is the Fourth of July?” Here is one small excerpt from this speech, “I am not included within the pale of this glorious anniversary! Your high independence only reveals the immeasurable distance between us. The blessings in which you, this day, rejoice, are not enjoyed in common. The rich inheritance of justice, liberty, prosperity and independence, bequeathed by your fathers, is shared by you, not by me. The sunlight that brought light and healing to you, has brought stripes and death to me. This Fourth [of] July is yours, not mine.”

Pandemic Blog Post Attempt #387

First week in quarantine.

Ok, 387 might be a bit of an exaggeration. However, I’ve started a blog post in my head at least a few dozen times, and on paper there have been no fewer than 4 attempts.

I am having a hard time writing. Writing is where I go for self-care, stability, creativity, making sense of the world, digging deep, telling stories that have a beginning, middle, and end. Hmm. Right. Not a lot of room in my brain for those right now. All the information coming in is such a clutter these days.

We’re home, all three of us, all the time, and we have been for nearly four weeks now. We are healthy. We have food, shelter, jobs, each other. We’re ok.

David works for the University of Rochester Medical Center. In his current position he is nonessential staff and has been able to work from home. On April 13 he switches departments (this was all planned before the pandemic and is a good move back to a department where he used to work, into a new position). Once the switch happens, he becomes essential staff. So, I spent the first two weeks experiencing intense stress at the possibility of him returning to work, visions of him quarantining in the basement, and possibly contracting COVID, and me single parenting indefinitely (and quite possibly injuring myself from going solo on Oscar’s physical care), in order to protect Oscar. Last week, after many phone calls and tons of paperwork, we got word that David can go out on paid family leave starting next week. That has relieved so much of my stress. And Oscar’s. And David’s too, though David was doing a great job of staying in the present moment and not getting too far ahead of himself.

Ok, that’s the best I can do with paragraphs these days. Here are some snapshot moments, musings, thoughts, feelings from our COVID-19 lockdown:

I used to look forward to getting the mail every day. Now it is one of the more dangerous parts of the day.

For the first time in the nine years we have lived in our house, I am grateful we don’t have sidewalks in our neighborhood, it makes it easier to avoid people while out walking.

Not being around anyone else besides his parents, 24/7, is really challenging for our extroverted tween.

Being around two other people 24/7 with no break is really challenging for this introvert. But if I had to be quarantined with anybody, these are the two I’d pick.

“Homeschooling” our very socially engaged learner while trying to work from home is overwhelming. Oscar’s teachers have been great, like really great, I can’t believe how quickly and seamlessly they transitioned work to a digital platform, but fitting a full week of school work in at home each week, yeah that’s not happening.

It’s really scary having a kid with a compromised respiratory system during this pandemic.

I keep saying that my goal for us every day is to get outside for a walk, and to video chat with at least one person (especially for Oscar) that we care about. Anything that happens beyond that is a bonus.

The apex in our community might not come for many weeks. If that’s true, then everyone who will be sick then, hasn’t been exposed yet. That means our actions right now really matter.

Our last grocery shop (Instacart, we tip big, wait as long as possible in between shops, and leave thank you notes for the folks delivering) took me about seven hours. We ordered for my dad, too, so he could pick up his groceries from our garage, rather than have to negotiate his single order being delivered to the apartment complex he lives in. The ordering online was spread over the course of four hours because I was helping Oscar with school work at the same time. Then, day of the delivery, I spent most of the morning finally setting up a proper staging area in our garage—a table with a “clean” side and a “dirty” side, I wiped the whole area down, set up wipes and hand sanitizer and bins for produce. So when the groceries arrived I could sort, separate, and disinfect each item before it came into the house. Then I stripped and showered. These are the precautions we’re taking.

We started a family isolation journal on our first day all home together. We’ve each been writing in it a few times a week, as a record of these times, and as a way to process some of our feelings.

We are so grateful to not have to get up at 5:30 every morning. We’re still keeping somewhat of a schedule, getting up 7ish on weekdays, getting dressed and ready for the day.

There is more yelling, crying, and cussing, from all three of us, than usual.

The first two weeks, almost every day around 10am, David came into the kitchen where Oscar and I were usually attempting school work, and asked, “Who brought the donuts to the breakroom?” So the last two Tuesdays I made cinnamon blueberry coffee cake/bread. Yum.

My sister, brother-in-law, and 21-year-old nephew are all essential services. Nurse manager/HR & safety manager for environmental clean-up/Wegmans. They are working looonnng stressful days, running errands for people like us who can’t risk leaving the house, continuing to work on the weekends, and my sister, who is also a gifted seamstress, is making masks for her staff on the weekends.

The incredible privilege we have to be able to stay home is not lost on us. Sometimes I feel like I am not doing my part to help the community because I am staying home and taking care of my family, and not much else. Yet staying home is one of the very best things we can do for our community.

I know that I feel better when I avoid large doses of social media and news media. I want to stay informed and connected in a healthy way. Yet nearly every day I find myself consuming a large quantity of media.

On the third day of quarantine I cut about 7 inches off Oscar’s hair, at his request (well, I don’t think he requested quite that much, nor did I realize in the moment quite how much I was cutting, but in the end everyone was happy).

The people I work with are like my second family, and I miss them. I have gotten a little choked up during or after each of our weekly Zoom staff meetings.

Oscar usually does aqua therapy twice a week, and PT at school twice a week, too. We have no idea when he will be able to get back in a pool again. Or work in person with any of his physical therapists. However, he is now doing Zoom PT, twice a week with this aqua therapist, and once a week with his school therapist. And it works! He’s getting a great work out.

Yesterday morning my brother-in-law dropped a few items from Wegmans off to us, at 7:00am, on his way into work. We stood on opposite sides of our glass front door and greeted each other. It was so good to see his face. I welled up as he walked back to his car and drove away. 

Love wins the day. David keeps saying this. It’s becoming a bit of a family motto. And it’s so true. Even when I write intense posts on FaceBook that include the directive STAY HOME in all capital letters, and maybe even use the F-word. Because as much as everything we do right now is all tangled up with grief, staying home, for those who have the privilege to do so, is one of the most pure acts of love anyone can perform right now.

And still I have a hard time posting this. Some of this feels so petty, so mundane, when so many people around the world are sick, dying, so many people are on the front lines, risking their own lives for others. When so many have lost their jobs, are facing discrimination, are working low wage jobs to provide food, or—as my mom keeps reminding us—clean the hospitals where COVID is running rampant. 

But we all have a story in this. All over the world. No matter what it looks like for each individual. We are all in this together.