On being judged for holding my kid down for his flu shot

I’m pretty sure the guy who gave my four year old his shot at the drive-thru flu shot place was low key judging me after I climbed into the backseat to hold Jeffrey’s arms and legs down, and when it was my turn he turned to Jeffrey and said, “Do you want to come hold Alizabeth down while she gets her shot?” (to which Jeffrey said, no.)

I kinda get it, and I definitely appreciate his helping make Jeffrey comfortable by asking him who his favorite super hero was and getting Jeffrey talking about batman. I really appreciate that, and I’d rather take a little bit of judgement along with a gentle, kid-friendly approach than no judgment and a no-nonsense attitude.

But here’s the thing. There is no easy way to handle something like shots, especially for a four year old who is old enough to understand what’s happening but young enough to not really appreciate the reasons why.

Personally, I always tell Jeffrey if something unpleasant is coming up, whether that is getting x-rays at the dentist or getting a shot. I let him know earlier in the day and we have discussions about dentist visits and doctor visits and shots as they come up on Daniel Tiger or Curious George or other times. Jeffrey knew we were going to get a shot, that it might hurt a little, and that afterward we’d get some food together. He didn’t want to come and told me as much, and I said, I know. You don’t have to want to come. I’ll try my best to make it quick and so that it only hurts a little, but it might still hurt. I know you don’t want a shot, but the shot is important because it can help keep you from getting so sick that you need to go to the hospital.

So we talked about it, and I knew he wasn’t down for it, and I was pretty sure that he would continue to thrash in his car seat indefinitely had I not climbed back to hold his arms and legs. I’ve sat in Doctor’s offices where I have heard a child screaming for a good half hour or so, not allowing anyone to give them a shot. Personally, I think that is more stressful than the actual shot, even if a parent a child trusts is holding them down. Certainly, I would rather be the one to restrain one of my kids than a doctor; my kids trust me, and if I’m the one holding them back as I tell them that I love them, I think they feel a lot safer than if I were to say something like, I wish you didn’t have to get a shot either but the doctor says you have to!

But even then, there is no easy way. Every parent tries to make it the best experience they can. We had also tried giving Jeffrey Michael’s phone to play a game on. He knew we would get food afterwards. There just is no easy way to make a child go through pain, whether for vaccines or any number of other medical procedures, even if it is brief and even if it is for an important reason.

That’s all.

My Favorite Wheelchair Dances

Shows like America’s Got Talent have long been my guilty pleasures–so, combine that search history with the many interabled couple and disability channels I follow, and the YouTube algorithms brought me the gift of wheelchair dancing.

Marisa Hamamoto & Piotr Iwanicki

Two of these dances come from Infinite Flow, an inclusive dance company in California. When I went to their main page, I also saw that they have a virtual Film Premier of Scoops of Inclusion this Saturday that you can register for on their website, which spurred me to write this post. I hope I can watch it after the allotted time (12 p.m. EST). I’ve loved all of their videos, and thought I’d share a few here (as well as some other wheelchair dancers).

Probably my favorite video, so far, has been of a dance called “Pliancy,” danced by Marisa Hamamoto and Piotr Iwanicki, and choreographed by Phillip Chbeeb. Marisa Hamamaoto founded Infinite Flow after having been temporarily paralyzed by a stroke, and Piotr Iwanicki has Spina Bifida. And I also had the added bonus of discovering Bishop Briggs for the first time, whose music I’ve also been binge listening to since. You can watch it here:

Florent & Justin

This dance originally appeared on France’s Got Talent, but I quite like the extended edition. From what I read on a Talent Recap, the story begins with a young man trying to befriend a man in a wheelchair, but the man is resistant. While that may well be the case, I thought this summary didn’t really do justice to the complexity of choreography and atmosphere, and had the potentially negative effect of stereotyping the disabled man as being generally curmudgeonly. I thought, rather, that the “young man” was quite accurately portrayed as being somewhat infantalizing and somewhat disrespectful in his initial attempts at initiating a friendship, and that the disabled man’s reticence was rather fair. But I also love seeing the friendship unfold throughout the dance.

Gabe Adams, Mia Schaikewitz & Marisa Hamamoto

This one (also from Infinite Flow) is a wheelchair dance, but it is also a Tetra-Amelia dance–Gabe Adams has no arms or legs. All three dancers have such good synchronicity and chemistry, and the levels work so beautifully. I thought it was rather delightful.

Julius jun obero & Rhea Marquez

I’m not sure which “Got Talent” this show is from, but the act is gorgeous, and you can find them on Facebook.

Infinite Flow Ensemble Collaboration

For this one, I’m not entirely sure who all is part of Infinite Flow and who all collaborated with them (or indeed if the dancers were the collaborators), but I rather love the ensemble.

Marc Lafleur & Dmitry Kim

Also from Infinite Flow, these two just have a really beautiful, moving chemistry, and this video also shows dancing in a wheelchair as well as dancing with a prosthetic.

Last, I thought I’d share the first wheelchair dance video I came across, which is a rather cute rendering of a Homecoming Dance proposal:

For now, that’s all. I hope you found them as gorgeous and fun and awesome as I did!

Sonja Livingston’s “Nota Bene: On the Bodies of Poor Boys”

One of my favorite essays from 2019 was Nota Bene: On the Bodies of Poor Boys by Sonja Livingston. It’s a short read, but dense, lovely, rhythmic, and heart pinching. She’s also one of my favorite writers.

Here’s her author bio:

SONJA LIVINGSTON is the author of four books of nonfiction, including her latest collection of lyric essays, The Virgin of Prince Street: Expeditions into Devotion, and, Ghostbread, an award-winning memoir of urban and rural child poverty. Her work is widely anthologized and taught in creative writing and social justice classes around the country. Sonja teaches in the MFA program at Virginia Commonwealth University.

Sonja Livingston’s Essay Collection, The Virgin of Prince Street.

I also think that her essay is a helpful model, and I’ve put together an exercise in reference it.

Writing Exercise:

Tell a story about a family member or a friend or yourself, but identify them by a feature of their demographic or experience rather than by name or their personal relationship to you. Examples could be “Midwestern fathers” or “asthmatic children” (be sensitive to how those of any given demographic want to be described). Connect that person to broader themes and conditions. Anticipate the possibility of overgeneralizing, perhaps through internal contradiction (i.e., “Sick cats swallow their medicine loudly, fitfully. Except when they don’t.”), or assuming an exaggerated, unreliable persona (“if someone tells you that you’re wrong, you can dismiss them easily. They don’t know what they’re talking about.”) 

This kind of exercise could easily hit the wrong note, however, so it might help to do a sensitivity check with those the essay represents.

“Kid” published in Iron Horse Literary Review

One of my poems, “Kid,” had been selected as one of the winners in the AWP Intro Journals competition, and earlier this year it was published in Iron Horse Literary Review. They didn’t have my address at first so it took a while for it to come, but it’s here now! Everything I’ve read so far has been amazing, and I’m excited to keep reading through.

Also, I think this came out in February, and I chuckled a little when I saw “Welcome 2020” after the foreword.

Dear hive mind: I’m getting a phobia of sneezing

So for about four years, since sometime after Jeffrey was born, I’ve had a clap of blinding pain right above my right hip when I sneeze or cough, unless I curl up a bit in advance. Or if I sneeze and the pain comes, curling up afterwards usually helps the pain subside. 

This could sound like a hernia, but there is no corresponding bulge, and, in the past few months, I’ve also experienced the same thing in the exact same spot on the opposite side. The pain is generally all or nothing, except for the time shortly after when it is subsiding.
I’ve also started to have the pain on standing up quickly which is frustrating. On Sunday, I stood up and the pain was searing and I immediately curled up in a ball on the floor while it ebbed and flowed. So it’s becoming more inconvenient.

I saw a doctor yesterday who thought it was not a hernia and suggested I have an abdominal ultrasound, though he warned me that such ultrasounds often look completely normal. Well, on scheduling it I was told the ultrasound would cost at least a few hundred dollars out of pocket, so it’s a no from me.

Has anyone experienced something similar, either after a C-section/pregnancy or independently?

If so, let me know!

Thanks,

Lizzie

On Understanding

One of my and Michael’s friends, Andrew, also has Cerebral Palsy. Both Michael and Andrew speak differently because of CP. However, this does not mean that they can understand each other; in fact, while I understand Michael perfectly fine, and while Andrew’s wife Carrie understands him perfectly fine, and I understand Andrew pretty well and Carrie understands Michael pretty well, Andrew and Michael sometimes have hard time understanding each other, as Andrew (a stand-up comedian and screenwriter) pointed out to me so refreshingly a few years ago.

Which is pretty fabulous, when you ponder it, and true on so many levels.

Such as:

You are not just one more student or dropout or kid or teenager or patient or old person or parent or teacher or tourist or homeless person or voter or insomniac or pedestrian or shopper or photobomber or billboard sign reader or tooth brusher or restaurant patron or general cluster of cellular activity. You are, in fact, quite uniquely each of those things that you are; no one else brushes their teeth or photobombs their friend’s selfies quite like you do.

And—just as Michael and I can communicate more freely than Michael and Andrew, so I find I can often connect with those who are of a different religion or heritage as well or better than those more like myself. Such as how I can connect with Michael, the ever optimist, more than I can connect with others who tend to be cynical the way I sometimes am.

And—every once in awhile, I don’t understand Michael, and when I talk too quietly, he doesn’t understand me. But we love each other, and I know that Michael and Andrew love and respect and admire each other as well. And, of course, you know that your parents did not understand the fascination you might have had with chewing on twigs when you were five years old. (Um, let me clear my throat for a moment). But they loved you.

And—just like others can love you even when they don’t understand you, you can connect with others you don’t understand. If you don’t understand someone’s words, you can connect over attentiveness or shared experience or social media or deep mutual respect. If you don’t understand someone’s lifestyle or choices, you can connect with them by looking for commonality or by understanding that you have a different background and different life experience, and simply appreciating them for the valuable person they are.

And I’m pretty sure I haven’t even scratched the surface—so much good in the fact of two friends who can’t always understand what the other is saying.

Birth Essay up on Her View From Home

I’m really excited to have an essay I wrote, This is What it’s Like To Have a C-section, up on Her View From Home. A fellow writer, Lani had read it and suggested I submit, which I really appreciate because I had thought it was just a simple birth story.

My second C-section was different in some ways, but both were tender and vulnerable experiences. ❤

Camping will solve all of your problems

Are you overwhelmed with mess? Wondering what the purpose of life is? Generally irritated at the world around you? Camping will effectively bring you purpose, let you have space from the world, and eliminate the messes created in your house or apartment for the duration you spend away. This tactic is actually quite compatible with children, at least as long as you…

  1. Camp in an area that is not infested by racoons
  2. Camp in an area that is not surrounded by a raging river/cliff drop-offs/mountain lions/virus carrying mosquitos
  3. Camp in an area that is within a few minutes of a grocery store and at least one fast food restaurant
  4. Have extendable arms
  5. Have more than two arms
  6. Have a magically appearing stock of sippy cups and clean water and goldfish and cheese sticks and veggie straws.

If you are interested in this approach to getting a new start to life and you own a home, you may want to consider buying a pet racoon. This nocturnal omnivore will eat through your various doors and walls and eventually require the demolition of your home. However, as you will still own the plot of land, you will be left with a very clean lot of dirt, with which to set up a spare, minimalist arrangement, perhaps with the aid of a tent. If you don’t own a home, you may want to forego causing any damage to your immediate building, as this will only leave you truly homeless and in debt, for you will have neither roof nor place for belongings nor–and this is the important part–a piece of land to easily camp on. However, with some preparation, you can notify friends or family of your camping intentions and spend increasing lengths of time camping in back or front yards. Suddenly, your clutter problems will be over and you will have the mental space to focus on the now, prioritizing the pressing need to keep you and your children fed and clothed and at a sustainable body temperature.  

New family pet included.

Virtue Signaling and Tokenism

Lately, I’ve been thinking a lot about virtue signaling and tokenism.

As a white person, much of what I can say about race is almost necessarily virtue signaling or apparent tokenism. Even saying something like “Racism is horrible but I’ve been a racist” functions as a kind of woke signal.

I have come to feel that a) everything I can do falls or appears to fall into one of these categories in some way and b) trying too hard *not* to fall into these categories is almost worse than falling into them….because that comes back to not wanting to be construed a certain way. The problem with tokenizing is that it’s a way of wanting to appear non-racist. The problem with virtue signaling is that it, too, is wanting to appear non-racist to the outside world. So, the problem with trying too hard not to tokenize or virtue signal, as I see it, is also…not wanting to appear to be superficial or a “fake ally” to the outside world.

The fact is that social media and blogging are, by definition, public (or at least semi-public) displays. That is just what they are. Nothing makes its way onto your feed if you didn’t put it there with the intent that it be seen.

That is the power and problem with social media.

The problem side is, to a degree, pretty inherent to the medium. Any “good deed” or woke thought you post for the world to see is a kind of virtue signaling. I’m pretty sure that’s part of the whole point. Our sense of virtue can be influenced by the people we love or admire, so it can be valuable to come out publicly with some indication of our values.

Tokenizing could probably be seen as a specific way to virtue signal. That’s where you include or represent someone who is black or LGBTQ or fat or a woman or disabled just to show that you care about those minority groups…or rather, that you want to be seen as caring about them.

Personally, I think that representation and visibility are almost as important for our world and society as anything else. Real visibility brings love and pulls down barriers. Respectful and meaningful visibility opens communication lines. Visibility and representation can cut across party lines and ideologies and change hearts.Which means that the kind of social media content I believe to be the most impactful will also look like tokenization.

I have not been accused of tokenization. The truth is that I don’t post enough from people with different experiences and backgrounds than I have. I post a lot about health issues and disability, because they are familiar to me and because I have a better sense of just how stigmatized living with those can be, just by virtue of my experience. I also would say I have a fair amount of experience with sexism, but I generally feel that sexism is pretty well documented and understood. I don’t feel compelled to write about it as often, at least relatively speaking.

But frankly, I think it would be better if I *did* do more things that could look like tokenism, because visibility is one of the great strengths of social media. Obviously my social media sphere is rather cozy and small, but perhaps that is a plus in its own right. I know that, as a woman and half of an interabled couple, I wouldn’t mind if people engaged in more “apparent tokenism” about women and people with disabilities or interabled couples, insofar as that means making a point of representing them in movies or books or sharing their message. I’d love to see a photo of someone sitting at a coffee shop saying, “Just enjoying Shane Burcaw’s memoir, “Strangers Assume My Girlfriend is My Nurse” and a cappuccino.” I’d love to see a picture of a little boy cheering at a women’s basketball game, and the more often, the better.

I’m not saying stick minorities into roles as extras and call it a day. I am saying, (at least to myself), that there’s value in both seeking and sharing videos and books and messages created by and about people with a variety of different backgrounds, particularly those that aren’t generally featured in my media stream. I’m always happier for doing so, and I’ve found some of my favorite writers and artists while having diversity in mind.

Anyway, that’s been on my mind. Maybe it’s been on your mind too. I’m down for hearing more perspectives about it.

A Portrait of the Writer’s Husband

This is Michael.

Michael takes his son to the playground most mornings.

Michael laughs at Lizzie’s jokes and lets her interrupt his work to show him pictures she has drawn. (Lizzie sometimes feels guilty about this).

Michael, in general, does not interrupt Lizzie when she is drawing pictures or reading books or thinking deeply about what books she hasn’t read but would like to. 

Michael’s favorite meals are Chaboni yogurt, a cheese and tomato panini, or chocolate milk and quesadillas.

Michael eats the corn on the cob that Lizzie makes almost every night, even though it isn’t his favorite. 

Michael likes all of Lizzie’s Facebook posts, even though Lizzie only sees a few of Michael’s posts, and only likes the ones she understands. (Lizzie recognizes she could probably understand most of them if she tried. She feels guilty about this).

Michael doesn’t eat avocado because it makes his throat itchy and tense, but when he eats it anyway, he smiles.

Michael knows the way to In-N-Out.

Michael beats Lizzie at Scrabble every time.

Michael turns the AC on for cool air and white noise before Lizzie puts the toddler to bed.

Michael brings Lizzie lunch during class when she forgets breakfast.

Michael helps Lizzie find her glasses when they are on her head.

Michael helps Lizzie find the toddler when she forgets that she is holding him.

Michael tells Lizzie if she has a text so that she doesn’t need to own a phone, which Lizzie appreciates very much.

Michael shares his favorite yogurt with the toddler.

Michael takes out the trash.

Michael doesn’t mind that Lizzie doesn’t take out the trash, or at least he doesn’t say anything.

Michael compliments Lizzie when she does the dishes.

Michael compliments the lawn after Lizzie gives it a bad haircut with scissors. It is a very small lawn.

Michael compliments Lizzie when she gives him haircuts, and does not bring up the very bad haircut she once gave him.

Michael gives the toddler his vitamin in the morning.

Michael tells Lizzie that the toddler has already had his vitamin when the toddler asks for another before bed. 

Michael sometimes gives the toddler a chocolate sandwich in the morning.

Michael does not always tell Lizzie that he gave the toddler a chocolate sandwich in the morning. They are very small sandwiches.

Michael walks the same pace as Lizzie, which is more leisurely than average, except when Lizzie is anxious or running behind.

Michael takes many naps, but for short periods of time.

Michael likes hand massages from Lizzie.

Michael takes the toddler to the babysitter when Lizzie wants to sleep in.

Michael wakes up before the toddler, which is saying something.
Sometimes, when Lizzie does not want to get up in the morning, Michael brings her chocolate and slides it gently between her teeth.

Be like Michael.