Oscar-Go

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.

One of the highlights of 2019 was Oscar as the featured guest on Connections with Evan Dawson, an hour-long radio program on our local NPR affiliate, WXXI 1370AM. Oscar spoke about disability rights and awareness, and did us proud, to say the least. (David and I appear on the show as well, along with Oscar’s school counselor). Here’s a quick one-minute spot from the show:

And here is the link to the full hour-long show:

https://www.wxxinews.org/post/connections-oscar-merulla-bonn-disability-rights

This came about because last spring Oscar’s fifth grade teacher invited him to give a presentation to his class on disability rights for Human Rights Day. Once he moved to the middle school in the fall, he requested to give this presentation to the faculty at the middle school. The Connections producer caught wind of the presentation and invited Oscar on the show!

This fall Oscar was the Ring Dude in Briana & Brad’s wedding. Briana was Oscar’s very first MDA camp counselor when he was six and seven! What special people, what an incredible event!

Oscar has taken his drawing to a whole new level this year, these are a few in the recent series of demons he has created:

David had quite the year. He injured his knee in March and had ACL reconstruction surgery at the end of May. For a guy who had been running 6 days a week, and doing the lion’s share of the physical work of taking care of Oscar, this was no small ordeal. We are deeply grateful for the folks who fed us and helped us out with Oscar! David was cleared to run in October and completed PT in November. He worked so hard to get there!

And I did a lot of reading this year (this is just a small sample) and I also gave a reading, for the first time in a long time, with my friend and one of my favorite Rochester writers and artists, Reenah Golden.

We participated in the Rochester east-west anti-racism walk with our friend Ken, who is the great, great, great grandson of Frederick Douglass.

And we took Oscar on an overnight trip to see one of his favorite bands…

We had a much needed and deeply relaxing/rejuvenating week at the ocean (Rhode Island) where we ran into dear friends and neighbors who we ended up spending much joyous beach time with!

And we had the great fortune this year of seeing many friends and family from far away, many of whom we had not seen in quite some time!

David with my two favorite cousins at the Mark Bradford show at the Baltimore Museum of Art

Oscar with friend and author of Good Talk, Mira Jacob. (If you haven’t read her book, you must!!! All three of us appreciated it deeply, one of the best books of 2019 for sure!!!)

Oscar & Lila (at the Memorial Art Gallery) have known each other since they were in utero

We became great friends with this family when Oscar and Graham were in preschool together! We caught up with them in RI!

We had too much fun with these guys to remember to take a photo until it was dark. We’ve been friends with Sarah nearly 20 years, but we live thousands of miles away from one another…

And what joy to see this Sarah, who Sally went to college with, and her kiddos.

And another fabulous fall visit from Noppa and Merrill Bittner!

We are grateful for ALL our family and friends, near and far, and for many good times spent.

xxoo,

S, D, O

August is SMA Awareness month. Throughout the month I posted four mini-blog posts on Facebook, and thought it was worth gathering them together, here, for anyone who didn’t get to see them all. It’s a tiny peek into our world of disability. Additionally, there is a bonus link at the end, I highly recommend you take a look! Here are the four off-the-cuff posts with the original photos I posted them with…

August 2

August is SMA Awareness Month. I know some amazing people in the SMA community who are planning to post every day, or several times throughout the month, different facts and info regarding SMA, disability awareness, etc. I’d love to believe I will, but the truth is I’m sleep deprived, and I never know what I’ll have the time/brain power/inclination to actually do. I could say that SMA has been part of our lives for 9.5 years because that’s how long ago Oscar was diagnosed, and that’s when we first heard of it. However, it’s always been a part of our lives because David and I were each born as carriers of SMA, and never knew it. About 1 in 40 people are carriers, in fact. I am so much a better person for the presence of SMA in my life, much of that is owed, of course, to the bright light our Oscar is. I have learned so much about accessibility, about acceptance, about inclusion, about creativity, about advocacy because of SMA. I have met remarkable humans: kids, parents, PTs, physicians, NPs, RNs, PAs and so many more. I have learned that walking is definitely not the most important thing I can do and that one can have a completely fulfilling and joy-filled life and never walk. I have learned how to step out of my comfort zone and ask for help. I have learned how to step out of my comfort zone to tell complete strangers they are out of line in parking in the yellow lines or in the accessible parking “for just 5 minutes.” I have learned that doctors and administrators are just people too, and at times I know more than they do. I have learned when to listen to them, and when to question them, and when to be silent and do the opposite of what they suggest. I have learned to pick what really matters to me in life and stick with it. And to forgive myself when I am too tired to stick with it. I have learned that my kid knows more than I do about living with disability, and sometimes I have to back pedal and say “I’m sorry, you are right.” I’m looking for that last sentence to neatly wrap up this little post, but every day I am learning more, there is no end to learning, to experiencing, so there is no real end to this post either. Thanks for reading.

The disabled parking space  is to allow greater room for a disabled person to move around  their vehicle or assemble their wheelchair . That’s why car park markings are more important than  you might think.

August 8

More about SMA awareness month. Things we have to think about every time we leave the house, especially going to new places: Will there be VAN accessible parking? Is there any accessible parking at all? Are all the spots already taken? Where are the curb cuts? Are there even curb cuts? Will there be muddy/gravelly/uneven or otherwise challenging or inaccessible terrain? Is the entrance to where we are going accessible? Do we need to bring one or more of our portable ramps (we‘re SO lucky to have them, nonetheless they are heavy and awkward to wield)? If we can get inside is the whole place accessible? Are there additional interior steps? Are things placed at a reasonable distance to allow a wheelchair easy access through? Will it be super crowded (it’s very challenging to move through a crowded space in a wheelchair)? How much extra time do we need to allow for strapping Oscar in with his 5 buckles he can’t do himself to secure him in our van? How much extra time do we need to allow for a slow lift or a busy elevator? Do we need to cover Oscar’s joystick because of rain or snow? Has snow been adequately cleared for a wheelchair? Is there an accessible bathroom? If the bathroom is labeled accessible, and even if it is ADA approved, is it actually accessible? (Many ADA approved stalls are too small, or have doors that open inward, making it impossible to close the stall door once a power wheelchair is inside the stall). Is the bathroom gender neutral? (When Oscar and I go out together, alone, this is key, he is not ok with going into a women’s room!). And probably a dozen or more other things that are so second-nature to our thinking that I can’t even identify—just to leave the house, people.

August 21

SMA Awareness month post: People say things to people in wheelchairs that they don’t say to people who don’t use wheelchairs. It can be weird. Watch out you might get this face, if you do! Oscar, David, and I are working on coming up with some come-backs that will hopefully make people more aware, and hopefully not come off as rude, but honestly, this kid hears so many weird things (and the same ones again and again) it’s hard, sometimes, to address some of these and not sound rude. Some examples: We were in a parking lot recently (in the rain) and Oscar was zooming into the van. A passerby said, “Wow, look how fast!” (wouldn’t you be running in the rain?!) and then (and this is one he gets ALL THE TIME), “You really know how to maneuver that well!” I replied, “Yep, just as well as you and I can walk.” She laughed a slightly uncomfortable laugh. I get that someone unfamiliar with people in wheelchairs wants to relate in some way, and this seems to be an easy go-to. But would you ever say to an ambulatory ten-year-old, “Wow, you’re really good at walking!”???? He/we also often get, “I’ll pray for you!” Oscar’s comeback for that is, “Yes, please pray that I don’t get a lot of homework.” People in wheelchairs don’t need more prayers than people who walk. Life in a wheelchair is not unfortunate. Honestly I’d like to say to people who say that, “And I’ll pray that you learn not to ‘other’ people.” People also like to ask if Oscar has a license or tell him he’s going to get a speeding ticket. That was a little bit cute at age four. Not so much at age ten. Oscar has been in situations where adults in charge have said, “Slow that thing down!” or “Park that sucker!” The chair is part of him. It is dehumanizing to refer to it as separate from him, as he is the one in control. Would you ever say, “Slow those legs down!” to a kid who is running? Strangers often also like to refer to Oscar’s chair as a “car,” “cart,” “buggy,” etc. Perhaps there is some fear of naming what is. A child in a wheelchair. Guess what? He knows it is a wheelchair. He has known since he got his first wheelchair at the age of 19 months. It’s not scary, it’s the truth. And he LOVES his chair. The day he got his first power chair at the age of 3 remains one of the happiest days of my life, because he finally had the independence that other kids his age had had for some time. We’re loud and proud here in this family. People with disabilities are people. Talk to them like you to talk to any human.

August 31

SMA Awareness Month Post: Disability Pride. Yes PRIDE!!! Approximately 20% of the US population have a disability, and nearly one billion people worldwide have disabilities. A disability is just one of the many ways each human is unique from another. Oscar is so proud of who he is, as are so many people with disabilities. He doesn’t wish he was any different than he is. Oscar does not wish he could walk, he never has, in fact. Oscar’s disability is a part of who he is, it cannot be separated from him. Oscar says, “You shouldn’t feel sorry for me because I’m disabled. It’s who I am, it’s part of me…I’m just a kid like any other kid.” This concept is foreign to many. It was somewhat foreign to me before disability became a part of my everyday. Architecturally the world is not made for people in wheelchairs, and that is its own giant hurdle. When you notice a business with no accessible entrance, or no accessible bathroom, or shelves too tight together to easily fit a wheelchair, say something! But please also say something when you hear people using a different tone of voice with disabled folks, when you see people treating those with disabilities differently simply because they are disabled. In order to spread this message of pride, we need an army of accomplices. It’s exhausting day in and day out, especially for Oscar, to have to explain himself, to have to listen to the strange things other people say to him. Anyone who belongs to a group that is marginalized by society knows this. Because of my relationship with Oscar my mind and my heart are expanding. I am learning to further grow my empathy, I am learning to look around me more, to place deep trust in the voices of those speaking from marginalized communities. Join us in our pride. Not pride that Oscar is so cool *in spite* of his disability. It is not something to *overcome*. It is not something to *fight against*. It is not an IT. Disability is an important part of who Oscar is.

*  *  *

And finally,

I’d like to share with you the instagram account of a dear friend of ours who we know from the SMA community. She spent the month of August posting on Instagram in honor of SMA Awareness Month, and her posts were informative, moving, thoughtful, hysterical—all of it—capturing moments of the disability experience in a raw and beautiful way. You’ll see some of our sentiments mirror one another, and she also offers different layers, details, perspectives, especially as an adult who uses a wheelchair. Her posts moved me to no end. Check them out:

https://www.instagram.com/letsdothisheather/

We first met Heather when Oscar was three!

Oscar and Heather become fast pals at the conference. Seen here making the diver “OK” sign together!

Happy SMA Awareness Month! Thanks for reading!!!

xxxooo

Sally, David, & Oscar

It has been possibly the most culturally exciting week of our lives! And it was much needed. I haven’t posted in a very long time (but I have been writing, eventually that writing will see the light of day). I often post a year-end blog, with some highlights of the year. I may or may not get to that this year. The three of us carry a lot in the day-to-day (literally, for me and David, lifting Oscar). There is a lot that we have to deal with from an accessibility and advocacy standpoint, and simply managing the day-to-day of living as, or caring for, a person with a disability. We get tired easily, and slog through the multitude of weekly aqua therapy sessions (which O loves, thankfully!), doctor’s appointments, and other obligations. It can be hard to make room for even seeing the people we love, never mind getting out to culturally enriching events.

This week we did it! Three remarkable events in seven days!

On Monday night, we went to the capstone event of the Rochester Frederick Douglass Bicentennial year, Prophet of Freedom: Honoring Frederick Douglass in Word and Song. Keynote speaker was David Blight, historian and author of the brand new Douglass biography. Every single person who graced the stage that night was inspiring.

Here, Ken Morris, great great great grandson of Frederick Douglass (AND great great grandson of Booker T. Washington) greets Oscar. They had met back in April when Ken was in town, and became pals then. (Photo by Chris Christopher)

The event took place on the 171st anniversary of the publication of the first North Star newspaper. A piece of music that was written for Frederick Douglass, on the occasion of him leaving England to return to the Untied States, was played for the first time in 150 years. Ken spoke eloquently, telling the story of his great grandmother who had met Frederick Douglass, and whom he knew as a young boy—sharing that the hands that touched Frederick Douglass also touched his hands, that he is one person away from Frederick Douglass, one person away from history, one person away from slavery. I have heard him tell this story at least three times and every time I get the chills, and tear up.

On stage, beside the speakers, was one of the replicas of the Douglass statue that has been created by artist Olivia Kim in honor of the Bicentennial. The statue was made in the image of the statue that currently stands in Highland Park in Rochester, which is the first monument to an African American anywhere in the US, dedicated in 1899. 13 statues were made to be placed throughout Rochester in key locations that hold an important piece of Douglass history. (More info here: http://www.douglasstour.com/ ). Ken’s mom, seeing this statue for the first time, had an emotional moment with the statue of her ancestor, as she took the stage to speak.

Here is the statue that sits outside Hochstein (the location of Douglass’s funeral) in the nighttime snow, after the event. Ken Morris’s hands were used to shape the hands of these statues.

I could go on and on about the night, how Carvin Eison, the project director for Re-energizing the Legacy of Frederick Douglass gave an inspiring welcome, or how Oscar stayed engaged for every minute of David Blight’s hour-long lecture, or how moving it was to hear Thomas Warfield sing Like a Motherless Child in honor of Frederick Douglass, or any number of other things from the evening. It was electrifying, and so inspiring. I have been on the Frederick Douglass Bicentennial Committee here in Rochester this year, through my work at Writers & Books, and it has truly been one of the most fulfilling parts of my 2018. I could go on and on about that, too, but my aim is get a post out quickly that also includes two other events…

Thursday night we went to see Garth Fagan Dance. Garth Fagan started his dance troupe 48 years ago, right here in Rochester, and has long since gained international acclaim. He is most famous for choreographing The Lion King, but I knew his work long before that. My mom and I used to usher for his local dance performances when I was a kid, and that’s exactly what David, Oscar, and I did on Thursday.

Appropriately, Oscar and I are both wearing hand-knit items by my mom (my skirt, and Oscar’s Greek mythology sweater).

I don’t think enough time has passed for me to have formulated the words—or maybe there aren’t words because the art form is about movement—to describe the power of the evening. There was a beautiful dance honoring the lives lost on 9/11, an amazing new work choreographed by Norwood Pennewell, and there were two very early dances that were revived for the night, one from 1981 that I am certain I have seen before, possibly as a kid, and one from 1978. Those were equally exciting as the brand new tribute to, yes, Frederick Douglass!, that included, in one of the movements, the Olivia Kim statue of Frederick Douglass. The movement alone is incredible, and it always has been so with Garth Fagan. The dances tell stories and evoke emotions in incredible ways. But the way the music, the costumes, and the dancers are all in conversation throughout the pieces is truly brilliant.

This is the first time Oscar had seen Garth Fagan Dance perform, and he was deeply moved. He really enjoyed his post handing out programs to audience members. This is something we will do again!

Another highlight of the evening was running into dancer Guy Thorne, both before and after the performance. We had met him earlier this year when he spoke eloquently at the funeral of the mother of one of Oscar’s friends—and we learned that she had been an internationally acclaimed dancer herself, who had also danced with Garth Fagan. Oscar’s friend has since moved back to Jamaica, where most of his family lives, and they exchange email from time to time. Running into Guy added to the warmth of the night for us.

And that brings us to Sunday:

Hamilton!

Last week a contact we have at the Make-A-Wish Foundation got in touch with us to let us know that a donor had donated 4 tickets to Hamilton in Buffalo and she thought of Oscar right away, as she is aware that Oscar is a serious Hamilton fan. Oscar is a serious Hamilton fan. That’s an understatement. He started memorizing the show the day he got the soundtrack, two years ago, and the music has often soundtracked his day since then. Lin-Manuel Miranda has become his hero. We had to jump at this opportunity. The seats were not wheelchair accessible, but they were in the orchestra, and on an aisle, so we decided it was worth doing whatever we needed to (booster seat, cushions, fighting the crowds with a wheelchair), to make it happen, to transfer Oscar into a theatre seat. I didn’t tell anyone about the tickets for fear of jinxing this opportunity (i.e. Oscar getting sick, a major snow storm, etc).

Turns out they were pretty spectacular seats…

The fourth seat went to Oscar’s great friend Charlie, whose family first turned us onto Hamilton!

Of course the show was amazing, to see this music come to life on stage. To have these incredible lyrics that we know inside and out take on a three-dimensional moving shape. It was so fantastic to listen to Oscar and Charlie’s critique on the way home, because as well as I know the show, they know it ten times better, and they could really identify the moments that were very different from the original cast recording—for better or for worse—and we all reveled in the moments that brought the story to life in a way that the music alone can’t. It was truly magical, to be right there in the room where it happens…

It was just too cold to have the patience to line up a proper selfie with the marquis in perfect alignment, but we tried!

We are a family that values the arts so much, and we prioritize the arts in our lives. But sometimes circumstances or resources don’t always allow us to participate to the fullest extent we might want to. We are deeply grateful for these experiences this week, that pulled us out of the daily grind, and so thankful for the people who made these experiences possible for us.

What a week!