COVID19

  • Sitting is still something

    woman sitting on a sofa and looking into the distance

    During a telehealth appointment last month, my doctor mentioned she was glad to see me up and around. (We had been discussing the latest wave of the pandemic, and my ankle injury last fall).

    “Well, I wouldn’t say I’m ‘up and around’ at the moment,” I joked. “I’m just sitting on my bed.”

    “But you’re sitting upright. And that’s something,” she replied.

    JB has started sitting independently, pulling himself up from a lying down position and just sitting up, whether in bed or on the sofa or the floor. This is a HUGE milestone, and we are so proud of him for his determination and perseverance in getting to this point. The funny part, though, is that he’s remained pretty unfazed by the whole thing, giving us such nonchalant looks when we praise him for his hard work and how well he’s sitting up. To him, he’s just trying a new way of balancing himself and seeing things from a new perspective. It’s nothing to celebrate or think too hard about. In fact, the bigger deal we make out of him sitting, the more likely he is to start wobbling and possibly fall.

    I feel like that’s what many of us have been doing these past few months – just trying to sit up. Because some days, amid the omicron outbreaks and the cancelled plans and the childcare dilemmas, that is all we can do. It doesn’t feel like we’ve accomplished some major feat – we are “only” getting through this pandemic the best way we can. Like JB, we are balancing and looking at things a new way, and if we think too hard about it, we are likely to second-guess our selves and our efforts.

    So today, even if all you’ve done is sit upright, know that it’s still something. And it is enough.

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  • Finding a faith community that fits

    When I started Joyful, Brave and Awesome, I said this blog would not be a place to discuss religious views, except for when related to the blog’s central message of inclusion.

    Well, over the past year our family has made some changes in how we practice our faith, and I wanted to share our experience with you.

    My husband and I were raised in and educated by the Catholic Church. We met while attending the same Catholic high school, were married in the Church, and baptized our son in the Church. Over the past several years, something shifted, though. I came to a point where the ever-increasing list of things I disagreed with was far too burdensome to make me want to practice my faith anymore. My husband felt similarly, and we discussed switching to a different denomination, but never actually followed through with it.

    As JB’s disabilities became more apparent and we learned more about his genetic syndrome, we struggled with how to give our son a faith community like the one we we grew up with – attending worship services, learning prayers, having traditions – while staying true to our beliefs.

    We tell JB every day that his differences don’t make him any less worthy of respect or love. He can achieve anything – pursue a career, fall in love and get married, raise a family, participate in social events, etc. Just because he was born a little different than other people doesn’t mean he is not enough, or is inherently wrong or bad. How could we justify telling JB these reassuring messages, while at the same time belonging to a group that limits people’s rights simply because of how they were born?

    I knew that if we wanted to lead by example and teach my son to have faith and believe in a higher power, my husband and I needed to make a change. As one person astutely pointed out, we were looking for a church that “preached what we practiced.”

    One of the good things about the pandemic was it caused churches to livestream their worship services. Our family was able to “attend” different Sunday services without worrying about when to sit, stand, kneel, sing, pray, etc. We also didn’t need to worry if JB had a meltdown, or if his feeding pump alarm went off, or if the building was wheelchair accessible. We ended up finding a local parish in a different denomination that is a much better fit for our family. This group has welcomed us with open arms, and has gone out of their way to make sure services and special events are accessible and accommodating for JB.

    I realize no church or religious family is perfect, and JB – like any other kid – will face hardship throughout his life regardless of his religious affiliation. But I also know that, as his mom, it is my job to provide him with a safe environment that fosters confidence, compassion, and tolerance.

    Recently, I have connected with an online community of writers and readers who believe in the importance of inclusion in faith-based writing. I am so excited by the work these group members are doing! As part of this group, over the next few weeks I will be sharing information about a new children’s book called What is God Like? that illustrates the themes of faith and inclusion in one of the most beautiful ways I’ve ever seen.

    You can see a preview of the book here.

    I’d love to hear if you have positive stories of inclusion and faith, whether disability-related or not. I’m also curious if you have any stories of changing your religious practices during the pandemic. Feel free to share in the comments!

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  • Acknowledging what we’ve lost this past year

    I know it’s been quiet around here the past two months.

    I’ve had a million article ideas buzzing around in my mind, including:

    • A Dose of Awesome focused on recent TV/movie reboots I’m loving;
    • Post-vaccine life so far;
    • My husband and my decision to leave the Catholic Church;
    • JB is learning to ride a tricycle!

    I’m still going to address some of these topics in the coming weeks, but today I’m going to discuss something no one wants to have to talk about – grief. (It’s not very joyful, brave or awesome, but whatever.)

    My grandmother passed away two weeks ago. It’s still not sinking in yet; I told my husband it feels like I’m in a foggy alternate universe. I’ve spent the past few days going through the motions, but feeling completely exhausted and emotionally drained.

    I’ve inherited a lot from my grandmother – my eyes, my love of Nutella and Italian cheeses (not together, as that would be disgusting), my love of libraries and reading, and my impatience and inability to keep opinions to myself! I hope I’ve also inherited her strong will and sheer determination.

    For some weird reason, I usually don’t cry at funerals. Rather, I’m exactly like Robin Scherbatsky in How I Met Your Mother, with wisecracks and a Mary Poppins-esque purse full of vices, ready to help comfort others. (I cannot find a clip of this scene of the HIMYM episode Last Words but trust me, it is wonderful.) At my grandmother’s funeral, however, I couldn’t stop crying. I was upset because my grandmother was gone, yes, but it was more than that. I was grieving many things from the past year:

    • I hadn’t seen most of my family (my grandmother, cousins, aunts and uncles, etc.) since Christmas 2019, and I was upset this was how we were reunited.
    • I was bitter about how much has been taken from us  – all because world leaders were reckless and incompetent and didn’t take the pandemic seriously during the first days of its spreading.
    • I hated how much the pandemic has messed with my mental health. Sometimes I tell myself I don’t have the “right” to be depressed or anxious anymore because everyone else is, too. This just makes the distorted thoughts and negative thinking spiral further and further out of control.
    • I worried that JB would be forever scarred because he’s already attended two funerals in his four years.
    • I was infuriated – that between pews being “roped off” for social-distancing requirements and the layout of the church, we had to position JB’s wheelchair right near the casket.
    • I panicked about the millions of “what-ifs” regarding my son possibly catching COVID while inside the church.  I was so scared in fact, I had my husband leave with JB halfway through the service. Would this be my new normal, constantly anxious and vigilant that until JB is vaccinated, every person out there is a possible threat?

    It has taken me a week to write this post because I feel guilty complaining about these things when I know so many people in this world have faced far more over the past year. More than half a million lives have been lost in the U.S. alone due to COVID-19, and each of those people leaves behind people mourning their loss.

    If you – like me – are feeling overwhelmed by what you can do to help people get through a second year of this pandemic, I encourage you to view this list of donation opportunities from CNN. Sometimes, I feel like looking outside myself and helping others is the best way to help alleviate my own grief, as cheesy as that sounds.

    As Michael Gary Scott, the wise former Dunder Mifflin Regional Manager, Scranton Branch, once so eloquently put it:

    Society teaches us that having feelings and crying is bad and wrong. Well, that’s baloney, because grief isn’t wrong. There’s such a thing as good grief. Just ask Charlie Brown.

    What have you been grieving lately, COVID-related or otherwise?

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  • Back to school . . . in March?

     

    Okay, have we got JB’s backpack? Check.
    AAC device? Check.
    Glasses? Check.
    Leg braces? Check.
    Feeding tube emergency kit? Check.
    Jacket? Check
    Face mask? Check.
    Additional face mask? Check.

    I am reviewing everything one last time in preparation for tomorrow. It’s JB’s first day of school: Well, his first day attending school in person in 2021. This week, he will begin attending some of his therapy sessions in person, along with outdoor recess with his classmates. We are finally allowing him out of his pandemic bubble, and I’m not sure if I’m excited or if I want to keep him in this protected cocoon a little while longer.

    Almost all parents have had to grapple with decisions like this over the past year. Is it safe for my child to return to school or daycare? Do the benefits outweigh the drawbacks? Should we wait until there’s a vaccine approved for kids? Can we buy enough sanitizing spray for me to sleep at night? Will the other kids be good about handwashing? Should I maybe go to class with him to make sure he doesn’t lick anything? (Pretty sure this last one is specific to me, but figured I’d keep it in here just in case anyone else relates!)

    I don’t know if this hesitation is because I’m a parent of a child with complex medical needs, because I’m a parent in the midst of a pandemic, or because I’m a parent. What I do know is JB needs to be in school again, even if it is only for a few hours a week at first. He needs to have therapists and teachers who are not his parents. He needs a classroom outside of our house. He needs to grow, and explore, and cause (good-natured) mischief, and see friends in person and not only on a screen. He needs to listen to music other than the “Agatha All Along” theme song I seem to be humming ALL THE TIME.
    And yet, right now I am literally drumming my fingernails on my keyboard – sitcom secretary style – because of all my anxiety. What if it is too soon? What if JB gets sick, whether it’s from COVID-19 or a cold or some other type of bug? I’m trying not to let my thoughts spiral out of control, but that’s easier said than done.

    Deep breath. 

    I’ve double-checked the backpack, and I think we are as ready as we’ll ever be for school tomorrow.

    Oh, and I asked my science-teacher husband; He can’t invent a Wandavision-like force field to protect JB from coronavirus because apparently “that’s not how science (or the Marvel universe) works.” Whatever.

    Affiliate links are used in this post. 

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  • Dear JB, it’s been quite a year!

    Dear JB,

    Do you remember where we were a year ago this week? I do.

    This was the week everyone realized it wouldn’t be a matter of if, but when a pandemic would be declared.

    We were hearing more and more about COVID-19, and everyone was worried about what this meant. We were debating whether or not to send you to school. It didn’t matter, though, because by Thursday afternoon, all schools had closed indefinitely.

    Your birthday party was supposed to be that Saturday, as we had decided March would be far less hectic than the week between Christmas and New Year’s Day. (We thought we were sooooo clever!) So, as everything shut down, we spread the word that the party would be held once this whole thing was over. (I wanted to keep our order for two-dozen cupcakes, but realized it may not be the best decision health-wise.) We figured it would be a few months, at most.

    We had no idea what to expect when this started. As I wrote in a blog post during that time, “It feels like we are all preparing for some big storm, but without a definite ‘start’ and ‘stop’ time. We all bought the bread and milk. Schools are closed. So when is the snow day getting here? Is it coming in a day, week, month, year?”

    We tried to keep our family as busy as possible during those first few weeks. We watched a LOT of animal-related educational videos on YouTube, taking advantage of the fact that your dad is a science teacher! You and I made loads of art projects, like the hands pictured above. I took on additional freelance writing assignments, as I found writing about “the helpers” was the best way to ease my anxiety during this uncertain time. And we spent as much time as we possibly could in our backyard, hoping the fresh air would boost our spirits.

    I don’t know what you will remember about these strange past 12 months. Will you recall all of the Zoom classes and family get-togethers? Will you tell people how unbelievably cluttered our house was once it also became a 24/7 preschool/therapy room/high school science classroom/office/restaurant/movie theater/concert venue/doctor’s office/summer camp? Will you look back longingly on the small, quiet at-home celebrations we had for Easter, Thanksgiving and Christmas? Will you one day tell people about how your crazy parents went through all sorts of “phases” during this time at home, including (but not limited to) sourdough, model building, succulents, painting, and Tiger King phases?

    Friday, one of your school therapists said to me excitedly, “Megan, I hope you see that there is a light at the end of this tunnel,” as she and I discussed plans for you to return to some in-person classes. I am still afraid to “jinx” anything, but I am once again starting to have hope.

    One of my favorite writers, Emily P. Freeman, said the following in a recent episode of her podcast The Next Right Thing:

    When I look back to this time one year ago, one thing that stands out was how impossible it became to make any plans at all. We were at the beginning of the great pause, but we didn’t fully know it yet . . . . So much felt impossible for so long, and some things still do, if I’m honest, but one question is rising up in me . . . . Is it time to dream again?

    JB, I have no idea what this next year will bring. I know there are positive signs, such as the vaccines, new national leadership, and the reopening of schools. Is it time to dream again, though? You bet it is! We may have to wait another year before we take that trip to Sesame Place, but nothing could postpone your strength, resolve and sense of humor. Kid, you’ll move mountains!

    Love,
    Mom

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  • 10 (well, actually 9) things I hate about now

    I’ve been dealing with a major case of writer’s block lately. Last week, while in a particularly grumpy mood, I compiled a list of “things I hate right now”.

    I think I needed to get all this down on (virtual) paper to clear my brain before moving on and writing my next blog posts. Since putting together this list, I feel creative again for the first time in months.

    Below is a cleaned-up version of the list. (Trust me, the original version was not suitable for online publication of any kind!)

    1. I hate this pandemic.
    2. I hate what this pandemic has taken away from our children, especially those most in need of the stability and socialization of a school setting.
    3. I hate the actions (or inaction) of leaders who got us into this COVID mess, and of those people who knowingly dismiss social distancing or mask guidelines and continue the spread.
    4. I hate when people dismiss others’ talents by assuming something comes easily or painlessly. “Oooh, can you play/write/design something for me right now?” Yes, because that is how the creative process works, you moron. My marketable skill/life’s passion/etc. is totally a mere party trick for your entertainment.
    5. I hate that I miss Pittsburgh sometimes.
    6. I hate that I don’t know if it’s that I miss Pittsburgh, or that I miss being a young twentysomething filled with possibility.
    7. I hate that some days I no longer consider myself filled with possibility.
    8. I hate when people say things like “It must be nice staying home,” or “Well, I could never put my child in daycare,” to mothers. You would NEVER hear someone say this to a man.
    9. I hate that I’ve gained weight and, despite knowing what I should be doing to be healthier, I don’t actually do it.
    10. I hate that I’m counting down till JB goes to bed so I can have a glass of wine and the slice of cake that came with our takeout tonight.

    Author’s Update: Yeah, so I ended up not hating anything about that cake and wine. Also, the above image is a stock photo, not the actual dessert. The real cake did not last long enough for me to photograph it. #sorrynotsorry

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  • It’s okay to consider 2020 the bad guy (or what I learned leaving Pittsburgh)

    Six years ago this month, my husband and I finished loading our U-Haul and hightailed it out of Pittsburgh and back to New England.

    We had lived in Pittsburgh for several years after college. It was where Chris and I had our first home together, where he proposed, and where we adopted our little big-eared wonderdog, Colby.

    We left Pittsburgh on very bad terms. People we had thought of as dear friends screwed us over for their own professional gain, while other friends silently stood by, or shut us out of their lives completely. To this day, there are only a dozen or so people we still keep in contact with from our time in Pittsburgh.

    When we left the city, we had no idea what our future had in store for us. All of our plans were now completely shattered. Neither of us had jobs lined up in New England, and we would be staying with family until we could land on our feet. Those first few weeks in limbo were easily the worst time in my life. I can’t think too much about that period, as it’s still so painful. In fact, it’s taken these past six years to gather the courage to write about it even briefly.

    However, I have been looking back on our time in Pittsburgh before we were dealt that blow.

    It was pretty common knowledge that while living in Pittsburgh, I hated the city. I did not want to be there; it was not New England. I never expected to live there, and before moving there all I knew about it was it was where Topanga’s family moved, ripping her away from her true love, Cory, on Boy Meets World.

    Now, though, with some literal and figurative distance between the city and myself, I can appreciate the good parts of living there. I made incredible friends through my graduate school program at Duquesne University, and with my neighbors at our apartment complex. I became a Pittsburgh Penguins hockey fan, and met Sidney Crosby at the Whole Foods deli once – swoon. As an American Studies major and history minor, I loved the historical significance of the city. Most importantly, Pittsburgh was the home of Mister Rogers, a personal hero of mine, and a constant reminder that kindness and decency are still very real. (Get ready for at least one blog post about Mister Rogers in 2021!)

    So why am I sharing all this right now? Well, we are all coming up on the end of what seems like a terrible, horrible, no good, very bad year. It’s easy to blame it all on 2020, that abstract, convenient scapegoat that summarizes everything bad lately.

    I felt the same way about Pittsburgh a few years ago. I thought of the city as a whole, giant, evil entity that was at the root of every hardship we were facing at that moment.

    Did it help in the short term? You bet! I went through a good few years where I wouldn’t mention Pittsburgh without an F-bomb or two before it. It felt almost cathartic to hide all of my frustrations and fears under that general “villain” I created.

    But then, once things started improving here in New England – once I had a new career, and new friends, and had JB – I didn’t need Pittsburgh to be the bad guy anymore. I could admit that I missed certain aspects of life there – restaurants, museums, etc. Sometimes I miss it a lot, and think about going back to visit. Make no mistake, I still hate the decisions certain individuals made to hurt us during the end of our time in the city, but it was the actions of a small group, not the entire city. (Side note: I do, however, still blame the city of Pittsburgh for everything bad the Pearson Family has gone through thus far in the first 3.5 seasons of This is Us. I will not budge on this.)

    Back to 2020: It’s obviously not the entire year’s fault. But right now, I think we need to express our collective grief and fear in a way that’s easy and relatable. And yes, that makes 2020 the scapegoat. When we are in a better place, once the vaccine is more available and we are under more stable political leadership and our daily routines are able to return to normal-ish we will be able to learn from this chaos. We may even find one or two parts of this crazy quarantine life that we miss someday.

    So for now, keep those “F U 2020” Christmas ornaments, or make all the “Thank God it’s 2021” comments you want! There’s a time to be mature, and we will get there. But don’t worry if you aren’t there yet. Heck, maybe you’ll never entirely get to that point of acceptance and understanding. After all, lord knows I’m never going to be a Steelers fan!

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  • Months in review: March and April 2020

    It feels weird using the word “awesome” to describe these past two months in the Twilight Zone known as quarantine. It feels so weird, in fact, that I actually started writing this piece for March, and then chickened out, feeling that it would be tone deaf and too frivolous. So, for the time being, let’s just call this “Months in Review”.

    I think we could all use some entertainment suggestions right now. Here is a super-sized list of things that either distracted me or made me feel a little more like “me” over the past two months, even with all of the craziness going on. (You’ll notice there are no books on this list. I’m putting together a special post on favorite reads later this month.)

    What I’ve been watching:

    Some Good News: John Krasinski is a national treasure. The latest proof of this indisputable fact is a gem of a weekly YouTube series entitled Some Good News, in which Jim Halpert himself shares uplifting videos and stories and makes people’s dreams come true through a mix of celebrity appearances, charitable donations, and awesome events like prom and graduation. Keep making your fellow attractive Polish New Englanders proud, JKras!

    Community:  Community is finally on Netflix, folks! This super snarky, bizarre sitcom is perfect for quarantine binge watching, because almost every episode parodies a different pop culture genre. You don’t have to watch every episode, or the episodes in order, either. Note: It is a little strange rewatching it now knowing where several of the actors are now. Donald Glover (Troy) is halfway to an EGOT, and the Simba to Beyonce’s Nala. Meanwhile, Joel McHale hosted the absolutely horrifying Tiger King “bonus” episode. (Do not watch that episode. It is far more disturbing that the rest of the series, through no fault of Joel McHale.)

    What I’ve been listening to:

    Niall Horan, Heartbreak Weather: I don’t know much about the guys from One Direction, but I do know two things: 1) Backstreet Boys are still the greatest boy band of all times; and 2) Niall Horan is my favorite 1D member. I absolutely adore this album. It is the perfect blend of 1980’s pop and 2000’s singer/songwriter guitar ballads.

    Mandy Moore, Silver Landings: I’m kind of glad This Is Us finished for the season early on in this quarantine, because I don’t think I could handle that fictional emotional rollercoaster on top of this real-world craziness. Mandy Moore’s Silver Landings album has been a great soundtrack during this time, though. Listening to these songs feels like wearing a flowy dress and floppy hat, and walking through how I picture southern California.

    What I’m playing:

    The Sims 4: Hi, I’m Megan, and I’ve been obsessed with The Sims on and off again for about 20 years (oddly about the same amount of time I’ve been listening to Mandy Moore’s music). When I saw Sims 4 was on sale for only $4.99 last month, I knew I had to have it. If you are unfamiliar with the franchise, I’ll put it bluntly: This is a computer game where you create and control people and relationships in a borderline-creepy godlike fashion. Some people think it’s funny to make their Sims miserable and suffer. Others (okay, I) always dress their Sims in trendy outfits they themselves would be way too self-conscious to wear, and get a strange sense of satisfaction whenever the characters exercise or do laundry or wash dishes or get a promotion. (See, I’m being indirectly productive!)

    The New York Times Crossword: For my birthday this January, I treated myself to a digital New York Times subscription, complete with the crossword puzzle add-on. Best. Gift. Ever. I love having the puzzles right on my phone to work on if I need a momentary break from the gift/curse of toddler TV programming. And, like the pride I get from my athletic Sims’ achievements, I also feel like I’m getting a bit smarter each time I complete a puzzle!

    What has been giving you a much-needed break during these past few months? I’d love to hear your recommendations!

    And finally, a note to all those who are on the front lines: Thank you. Thank you so much for your bravery, selflessness and resolve. You are the awesome ones right now.

    (Please note: There are affiliate links in the above post. As an Amazon Associate, I earn from qualifying purchases.)

    Image credit: Pexels 

  • This virus has changed everything

    Have these past two weeks been real?

    Take a moment to think about how crazy the things we’ve seen and done lately would seem even a month ago:

    • Fighting with complete strangers over toilet paper and hand sanitizer;
    • Singing aloud while we wash our hands;
    • Checking online for updates on Tom Hanks’ and Idris Elba’s health;
    • Using phrases like “hunker down”, “quarantine,” “social distancing,” and “flatten the curve” not only frequently, but also in an un-ironic fashion;
    • Watching talk-show hosts broadcast from their homes;
    • Having every family, not just those who have chosen to homeschool, suddenly conducting class in their homes for weeks, frantically searching online for lesson plans and craft ideas;

    Let me put this into perspective another way. Guys, I live in Massachusetts. Tom Brady left the New England Patriots last week, and it wasn’t even that day’s biggest news story. He’s been with them for 19 seasons. Heck, he’s a football player that I actually know the name of – that’s how you know he’s a cultural icon!

    Kidding aside, though, I won’t lie – this has been a frightening time. It feels like we are all preparing for some big storm, but without a definite “start” and “stop” time. We all bought the bread and milk. Schools are closed. So when is the snow day getting here? Is it coming in a day, week, month, year?

    In many ways, it feels like 9/11: The unknowing, the eerie absence of live TV shows and sporting events, few if any planes flying overhead, and the sense that everything has changed forever, while things may immediately look the same.

    There’s a difference though – when 9/11 occurred I was a teen, a student, “protected” by a force field of teachers and parents and other adults. Now I am the adult, and a parent to a child with complex medical needs who is especially vulnerable to getting sick.

    I’m trying to stay levelheaded, vigilant and prepared without sliding into hysteria. The anxiety I’ve lived with most of my life is still there, only now others seem to have these fears, too. (Don’t these other people know I’m supposed to be able to lean on them for reassurance? How can I do that if they are also scared or vulnerable? How rude!)

    There are a few things I’ve been doing to stay somewhat calmer over the past week. I wanted to share with you, as I know it’s a difficult time for everyone right now.

    • I’ve been talking to friends and family more over the phone and via FaceTime, rather than relying solely on texting. Folks, we need all the human connection we can get right now (WHILE MAINTAINING SOCIAL DISTANCING), and hearing a voice or seeing a face of someone you care about can make a real difference.
    • Coffee makes everything better. I’ve been making and drinking more coffee at home now, and I purchased a gift card to my favorite local coffee shop to support them now when they need it.
    • Never underestimate the power of a sheet mask for your face. Seriously, they cost under $4, they are mess-free, they are individually sealed and packaged, and you can put one on and feel pampered for 20 minutes. Pro tip: When you wear glasses over your sheet mask, you can recreate the Mr. Napkinhead scene from The Holiday. Or not. Your choice.
    • Now is the time for comfort TV. If you need to take a break and watch three hours (or three seasons) of The Office to calm your nerves, this is the perfect time to do so. I personally have been feeling a bit stir crazy, so I’m watching travel shows on Netflix when I need a break from my pals at Dunder Mifflin.
    • I’ve been keeping busy by taking on extra freelance writing assignments. I found that I can manage my anxiety a bit better by choosing what news topics I want to know more about, such as individuals and organizations helping others during this crisis. Mister Rogers said, “Look for the helpers,” so that’s what I’m doing.

    If you have any ideas for staying calm right now, feel free to share in comments or on Facebook!

    Image credit: Pexels 

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