Today is the first day of school—and Grace’s first day ever at this remote school. There have been several technical difficulties throughout the day. We can’t get to her classes from her district-issued device, so she’s using her personal computer. She can’t get into any of the Google docs because she’s not using her school device. Some of her classes don’t even have teachers yet, because the school’s enrollment ballooned over the past two weeks and there aren’t enough teachers for all the students. But by far the hardest thing to deal with so far today is the lack of accommodations.
Our main reason for returning to the school district (not homeschooling) was to get Grace’s vision services back. Her vision has deteriorated considerably over the last year and a half (since the last time she was in-person at school), and she really, REALLY needs help now. Many of her teachers have asked for the kids to read and write today, and she just can’t. She can’t really find what she’s supposed to read, and since she refused to learn to type, she can’t really answer questions in chat either.
When Grace was first enrolled in this remote school, I reached out to anyone I could find to ask about accommodations. I discovered pretty quickly that there wasn’t a special ed teacher, and really there wasn’t anyone in charge of special ed either. Eventually, I was able to get in a group email with the assistant principal and counselor, and I sent her IEP and health plan to those folks. I stopped worrying about accommodations, thinking that maybe it wouldn’t be as big of a deal at remote school. Turns out they are a huge deal.
In many ways, the accommodations listed in her IEP really don’t apply to remote school. Things like preferential seating and large print are emphasized, but there’s really no mention of how technology can be used to help her. This is a huge oversight, I now realize. Her former TVI tried to help her use technology but it never really made it into the IEP, at least not to the extent where it would be legally protected now.
Starting at a new school is always difficult, but there is an extra layer of difficulty with the missing accommodations. We had such an easy time with the SPED staff at her old school—they were always so easy to work with. I miss them now; it has not proven to be easy to work with the new school, though that’s mostly because of staffing issues. However, I’m sure we can get through any obstacles that are in our path. We have overcome so much already as it is!
We have always had to rewrite the books for Grace. Now it looks like we’ll have to rewrite the IEP accommodations, too. I hope her new school is up for the task. Legally, the district has to accommodate her, and hopefully they will choose to provide those accommodations at the remote school. Overall, it seems like the school will be a good fit for her—as long as they work with her disabilities.
Here’s to a new school year and a new set of challenges!
The lyrics to the Simon & Garfunkel song, “The Sound of Silence,” have a special meaning because of Art Garfunkel’s best friend, Sanford “Sandy” Greenberg. Sandy unexpectedly lost his vision while in college with Garfunkel, and Garfunkel helped him regain his independence. The reddit version of the story is available here. It is inspiring not because Greenberg overcame his disability, but because he learned that he could live with it. He learned that life didn’t end when his vision did.
Last night, Gracie couldn’t see her dinner plate. She could not find her food. After some moments of frustration, she allowed me to load up her fork with bites. Eventually, she was able to consume most of the food—enough to satiate her, anyway.
Her world is going dark. The shadows creep silently through her vision, clouding the present and darkening the future. As darkness squeezes in from every side, the possibility of Grace becoming an independent adult shrinks practically to oblivion. As I loaded up her fork last night, my dreams for her future vanished into darkness.
Grace no longer dreams of being a pop star when she grows up. As she matures, Grace’s desires for the future mature. She wants to have a job, get married, be a mom. She thinks she could be an excellent counselor. I think she could, too. She would be good at so many intellectual pursuits, provided she’s accommodated at college.
She’s so smart and beautiful that she will probably have no problem finding someone to fall in love with her, too. But will that someone take care of her? Will they load up Grace’s fork when she can’t see her food? Help her in the bathroom, help her in the shower, help her when she falls, help her with wound care, help her live her best life?
Maybe someday, there will be a Garfunkel in her life who can help her understand how to be independent and why it’s important. Maybe there will be an inspiring happy ending to her story, too. But right now, it’s hard to see anything except the encroaching darkness.
It’s August, and that means it’s back to school time! Although we all enjoyed homeschooling last year (well, maybe “enjoyed” is a strong word), the big kids are going back to public school for this coming school year. Jackson, who is fully vaccinated, is going back in-person to our neighborhood school. Grace, who is not old enough to be vaccinated, is going to do the district’s remote option.
As Delta variant cases rise, so does my anxiety about Jackson going back to school. I don’t think he’ll get sick from COVID, but he could definitely bring it home. After all, schools are the original germ factories. And that puts Gracie at risk.
We have been very lucky so far to have avoided COVID infection. Of course, we are careful—we don’t go out around people much, we wear masks indoors, etc.—but it still feels like we are playing Russian Roulette. It feels like we could be one turn of the barrel away from a devastating infection.
(Side note: In a heroic display of love and affection for his wife and daughter, Chad received his first dose of the COVID vaccine last week. Thank god.)
Grace has been exceptionally healthy this past year or so, most likely due to staying home, masking, and not being overly exerted from school. She will have all those things on her side again, which is great, but because Jackson will not be staying home, there are a few more rounds in the Russian Roulette barrel—a few more opportunities for her to get sick.
As much as I would love to homeschool them again, it is not the best thing for Jackson. He misses his friends so much. He would love the structure of the school day, and the activity that comes with gym class and recess. He needs to go back to school.
Grace could do homeschooling again if it were not for her worsening vision. There are no private-pay vision services available. Apparently Medicaid won’t pay for vision teachers to provide service in the home, so that’s why there are none who do. So, she has to return to the district so that she can receive vision services. At least there is a remote option. She can “work from home” while I work from home. We’ll both sit at the kitchen table with our laptops and do our thing.
Sometimes, there is no way out but through. All we can do is cross our fingers and hope for the best. And if the best doesn’t work out, we’ll change direction and do the next right thing.
A couple years ago, I wrote a blog post about vaccines and how becoming vaccinated protects those among us who are unable to be vaccinated. Since then, as we all know, the plague hit. I feel like it’s time to revisit the topic of vaccines with my personal slant. Because there’s a side to this topic that haunts me, which very few people know about.
When the plague known as COVID-19 first hit I wasn’t really worried about my own chances of survival. I’m strong and healthy, and while I never doubted that it would suck to have COVID, I didn’t think it would really hurt me long-term. Gracie, however, is a different story. “Healthy” is a word that has never applied to her, and with her slow healing and antibiotic resistance, a bout with COVID could be life-threatening for her.
When I was able to receive the COVID vaccine, I cried tears of relief and gratitude. I had assumed that because I was a healthy work-from-home-mom, I would be the very last person eligible for the vaccine, but when I became a CNA, the home health agency that employs me offered me the opportunity to get the COVID vaccine. It was amazing and I cannot begin to express the gratitude I felt to so many people/entities—the home health agency, the scientists who developed the vaccine, the people working so hard at the vaccine clinics, etc. My vaccinated status provided a layer of protection to Gracie that brought an immeasurable sense of relief during an otherwise anxiety-fraught time.
Before too long, the vaccine became available to all people 16 years old and older. Although the plague hadn’t ended, millions of people received their vaccines, providing even more security for our grocery store and Target outings. And then the vaccine was opened up for anyone 12 and older. Many more lined up to get their shots, Jackson included. It was a proud day for me when my son pulled up his sleeve for the COVID shot. He absolutely wanted the vaccine—he said, “Duh. Of course I want it. Why would I want to get COVID?”
But millions more refused the vaccine. One of those vaccine-refusers is my husband.
Shocking, right? That someone with an immunocompromised child could refuse a vaccine? That someone could cite concerns with the way COVID has been reported (well over 600,000 people have died in the U.S. alone! If even a third of those were incorrectly reported, that’s still almost half a million people!)? Or the fact that most of the people who have died are over age 75 (HOW does that justify anything?!)? Or that the vaccine is made with a new scientific process, previously untested (yay science! yay progress! yay technology!)?
And here I am so grateful for the modern medical technology, so ready and willing to receive a vaccine. My husband and I could not be more different.
COVID is again surging, well into 2021, with the rise of the deadly Delta variant. The Delta variant is causing more severe illness among younger people—previously healthy people in their 20s, 30s, and 40s are requiring hospitalization. The difference is that the vast majority of those who are so ill they need hospital care are the unvaccinated. You know, like Gracie and Chad. Gracie is unvaccinated because she is not eligible for the vaccine; it’s still being tested for children aged 2-12. Elliot is also unvaccinated, though he is healthy and strong like me. And Chad is unvaccinated because he believes COVID is not serious to anyone under age 75, and that the previously untested vaccine is not safe.
I’m sure you can imagine that our differing stances on vaccinations have caused many fights between my husband and me. That’s not the only issue causing fights, naturally, but it’s certainly a hot topic. When we got married, we knew we were very different people—Chad used to say, “I’m a Republican and you’re a Democrat and that explains it all.” Perhaps that is still the defining rift in our marriage, but ever since Trumppa the Hutt’s evil reign, that rift is much more pronounced. It’s such a wide chasm that it seems impossible to find a way across.
Maybe if I hadn’t had Gracie I would be a science-denier, too. But I’ve seen modern medicine save her life many, many times. I’ve been forced to rely on doctors—even ones I didn’t particularly like—to offer her life-saving treatment more times than I can count. And I do not believe that anyone is “out to get us” or has any ulterior motive for creating a new class of vaccines. Honestly, I think it’s amazing to be on the cutting edge of scientific technology. If that makes me a sheeple, so be it. Baa.
So there’s my dirty little secret. For all my pro-vax stance, for all my trusting modern medicine and working SO HARD to keep my daughter alive and as healthy as possible, I’m as good as a hypocrite. My own household is not fully protected. I cannot force my husband to get vaccinated, and no amount of facts and reason will sway him. No amount of marriage counseling will bridge this divide. This may just be the hill our marriage dies on.
I don’t know how this story will end. But I can only hope that it will NOT end with Gracie contracting COVID and ending up in the hospital. I can only hope that she will be able to stay well until vaccines are available for kids her age. And I can only hope that someday, somehow, my husband will see reason and get the vaccine—but I don’t think he will.
Last year was such a difficult year that, when people would ask what good things happened, I couldn’t think of anything. But after some reflection, it turns out there were some good things that came out of the pandemic.
First and foremost, Grace is as healthy now as she’s ever been. Ironic, right? The entire world shut down because of a virus and she got healthier. Staying home prevented her from getting the usual array of respiratory and stomach viruses that spread like wildfire through schools. But in addition to this, being home meant that Grace didn’t use as much energy throughout the day, and therefore was able to conserve her strength for fighting bacterial infections. We were able to ward off several bad bacterial infections at home—some by the skin of our teeth—and it has been a year and a half since her last hospitalization. I’m pretty sure it’s the longest she’s ever gone without an inpatient stay. And good thing, too, because it would have been very hard on the family to have Grace and I in the hospital. Elliot couldn’t have gone with us because of COVID restrictions. Actually, Chad and Jackson and Elliot couldn’t have even visited because of COVID restrictions. Elliot would have suffered terribly from not having me and Sissy around, from having to change his daily routine so drastically. It is a very, very good thing that she stayed out of the hospital.
Because of this newfound health, I am reticent to send her back to school once she’s able to be vaccinated (hopefully this fall!). She’s thriving at home. She doesn’t want to go back either; she doesn’t even want to do the remote option I enrolled her in for the fall. We will see if she gets overexerted with the remote option. I can always pull her and homeschool her again if it’s too taxing for her. But the benefit of the remote school is she will get time with her vision teacher again, and since her vision is drastically worse than when she last attended in-person school, this is a huge selling point. (Grace doesn’t think so. She doesn’t want to see her vision teacher and doesn’t want to go blind—but that’s a different story entirely.)
The other pandemic pro is also related to Gracie. Grace has been trying very hard not to bite her fingers. Thank the good lord!!! Her fingers will take a long time to heal, as they have deep fissures where the tissue has a hard time pulling together, but this is a HUGE step in keeping her healthy. The only new injuries on her hands, in general, are accidental—and she still has plenty of those. For the first time in years, Gracie has fingernails! She is able to paint the four nails that grow (both thumbs and both pinkies) and loves it. (The rest of her fingers are too mangled to grow nails, or else they’ve had amputations and the nails will not grow.) For so many years, I wondered if she would ever stop biting. It was a horror that seemed neverending. But now, amazingly, she stopped. She’s working so hard not to bite. She still slips up now and then but at least I’m not finding hamburger fingers every other day. In fact, even when she slips up she’s not biting as severely. This is a definite improvement and I’m so proud of her. And it has contributed majorly to keeping her healthy, so that’s a plus too.
There is no doubt that this past year was ROUGH. A post describing all the horrible things that happened would be far too long for anyone to enjoy. But there was good, too. It took me a long time to see it; I was enmired in the dark and couldn’t notice anything good. But sure enough, two major benefits emerged from the pandemic. I am grateful.
Since I was laid off last June, I have applied for several jobs, but only got an interview for one. After that interview, I realized that it will take a special employer to hire me. I need to be fully remote, and I need to have enough flexibility to take my special needs child to multiple appointments each week.
One night, while I was laying awake stressing about how I would manage a 40-hour-per-week job, I realized that what I really need to do is write an un-resume. So here, dear readers, is my un-resume.
Susan is a hard worker. She is up all night with her children and still manages to cook them eleventy million meals per day. She works hard to pick herself up from blow after blow, as appliances, electrical circuits, bathroom fixtures, cars, etc. break down in front of her. She tries to remain positive but actually she’s been failing at this lately, since it seems like she just can’t catch a break, and the hits come faster than the good stuff.
Susan is a real go-getter. She goes to therapy appointments for her daughter, goes to Costco, goes to the grocery store, etc. She also is going crazy, since costly repairs of just about everything keep being necessary and there is not enough money to go around. The one place Susan would actually like to go is to bed, but then she wouldn’t be able to sleep anyway because stress causes insomnia.
Susan gives 150%—to her kids. They are her whole world and she would do anything for them, at any time, in any place. She spends hours per week dealing with medical personnel on her daughter’s behalf. She has the ability to multi-task, juggling cleaning up her toddler’s frequent messes, her daughter’s anxiety, and her older son’s teenage angst.
Susan requires a job that will be completely remote so that she can continue to take care of her kids while working. This means that she will not be able to give her full attention to anything, especially not detail-oriented tasks like editing, unless her kids are quiet for five freaking minutes.
Susan managed to convince the Colorado Legislature to change the law for her special needs child in 2018. Did I mention that Susan has a special needs child? This is a big deal for any employer, because it means that she has to work harder to take care of her child while she’s also working for her employer. It also means that she may occasionally have medical emergencies to deal with, and will have to work from the hospital at times. This is another reason she has to be a remote employee—she has to be able to take her work with her as she spends a week in the hospital and another week running to multiple doctor’s appointments to follow up.
Susan is also a Girl Scout troop leader. Do you want to buy any cookies? Just kidding, the cookie sale ended yesterday. But each year, she will post the link to her child’s cookie page multiple times during cookie season and will hound you until you buy cookies.
Susan recently passed her tests to become a Certified Nurse Aide. This has nothing to do with editing, but if anyone needs their butt wiped, she can totally do it.
Susan is familiar with and comfortable using Zoom for meetings and assignments. Her children have a habit of popping into the frame, so she tends to use a virtual background, which is okay until the little blonde head appears in front of her. Surprise! The children also tend to scream and shout during the Zooms, so she keeps her microphone muted as much as possible. Fortunately, they are experts at screaming the exact moment she unmutes.
Experience: 13+ years as a Legal Editor for various legal publishers. 13+ years as a mom, 10+ of those as a parent of a special needs child. About 3 days as an official CNA.
Education: Bachelor’s Degree, English, 1996-2000. School of hard knocks (yeah, it’s corny, I know), 2020-2021.Parenting school, haha, jk, this doesn’t exist.
Lately, several people have pointed out that our family was hit particularly hard by the pandemic. We certainly have had a string of misfortunes, no doubt about that, but it’s hard for me to accept that we were hit hard by the pandemic. After all, no one I know personally has died of COVID—I know families who have lost several people this year, but everyone I know personally who had COVID survived (even a few who were very seriously ill). The families who lost loved ones were hit hard by the pandemic. We have been lucky.
But there can be no denying that several bad things have happened this year. I’m losing my resilience, as the hits keep coming before I even get back up.
First off, I lost my job. This was partly my fault; I knew layoffs were possible and told my executive director that if anyone from my department was laid off it should be me and not my coworkers. I was the new guy, the lowest on the totem pole, and it didn’t seem fair for me to keep my job if others had to lose theirs. And this appears to have worked, because all of my fellow editors are still there.
Then, of course, I lost our family’s health insurance. COBRA was completely unaffordable and I’m not sorry I opted out of that, but I do sometimes wonder why I didn’t try to get a marketplace plan over the summer. It never occurred to me at the time, though it certainly does now. But the reality is that I probably would have opted out then anyway, because we were worried about money and I wouldn’t have thought I could afford the premiums. (I would have been correct about that, too.)
Losing the health insurance wouldn’t have been a problem if Chad hadn’t had his car accident. We were able to pay for the kids’ well visits and our flu shots out of pocket and it wasn’t a huge expense. But man, that car accident is just the gift that keeps on giving. Chad, of course, feels it the most. He is in constant pain, he does not yet have full range of motion, and he can’t even pick up Elliot.
I am dealing with the more administrative side of his accident. I’m dealing with all the medical bills and trying to get the car figured out. Almost every day, I deal with something related to the accident. Lately, it’s all been dealing with State Farm. It’s a very long story, but they aren’t willing to pay for all the damage to the car and they also won’t even allow anyone to assess whether the car is safe to drive. At this point, I’m ready to dump State Farm for good and get rid of the car to whoever wants it, but I can’t because we haven’t reached a resolution of any kind yet.
And then there have been a million other things that have come up, too.
I was supposed to take the skills portion of the CNA licensure test on February 26. My test was at 8 am in Pueblo, which is about 2 hours away from my house, so I got up at 4:45 that morning, got ready, and was in my car at 5:30 am, only to discover it wouldn’t start. I tried for 10 minutes or so to get it started and finally woke up Chad. Together, we tried until about 6:05, when I would have been late for the test anyway. I never did make it to Pueblo that day, and spent the whole day trying to get my car towed to our repair shop, getting a rental car, and also dealing with nasty adjusters regarding Chad’s accident. That was also the day I found out they’re not covering the majority of the damage to Chad’s car. They say it was unrelated. I can’t make them change their mind and they said they would only consider proof that doesn’t exist—pictures of the accident from the day it happened.
I still am not a fully licensed CNA, but thankfully the agency I was working with agreed to keep me despite my failure to test. The test has been rescheduled for 11:30 am next Friday in Pueblo (that facility is the only one offering the skills test at this time, apparently). This was for the job I have been trying to get since July. The only job I *can* get. The only job that allows me to take care of Grace and keep her safe. To miss the test was to jeopardize my only chance at making an income. It wasn’t just a big deal—it was a BIG DEAL. Add to it the $950 repair bill for my car, plus the $350 for the rental, and it was a certifiably bad day.
The latest in the “what else can go wrong” saga is that our washing machine is broken. If we have to replace it, it will be the third major appliance we’ve had to replace this year. It will almost certainly be hundreds of dollars to repair but we’ll find out tomorrow.
It feels like a very long time since we’ve had money to spare for anything. I have been extremely careful about what groceries and household products I buy. I keep having to tell the kids no when they want the latest and greatest toys and in-app purchases, which I hate. I try to only get gas at Costco, where it is considerably less expensive. I downgraded our expenses as much as possible, and yet every time I turn around there’s another hand sticking out, waiting for its due. The financial stress is unbelievable.
And yet, we are the lucky ones. We have family to help us out and give us a safety net when we need it. We have never not been able to buy milk and diapers, thanks to some gift cards friends and organizations gave us. We aren’t literally starving. And most importantly of all, our family is alive and relatively healthy.
There truly have been a lot of things that have gone wrong for us. We have had a lot of hardships since COVID hit. But there are so many things that have gone right, too. We are the lucky ones.
I feel like a train wreck is a suitable image for 2020.
Oh, what a year! None of us will forget this one for a very long time. We all know the global craziness—the fires in Australia, the police killings and subsequent protests, and, oh yeah, that little thing called COVID-19.
Individually, though, our family had a rough year, mostly directly related to COVID-19. We are not alone; I know several other families who have experienced previously unheard of hardships this year.
Readers of this blog will already know I lost my job in June; the company for which I was working laid off about a third of its workforce due to COVID-related loss of income. Along with losing my job, our family lost its health insurance—I carried insurance for all of us through that job. That caused a couple of hiccups but nothing major until December.
At 7:39 am on Friday, December 11, 2020, I was snuggling Elliot in my bed when my phone rang. A panic-stricken Chad was on the other end, crying hysterically, telling me that he was in a bad car wreck and he broke his arm. In that moment, I urged him to hang up and call 911. Instantly, fear flooded over me. Was he okay? Was someone else hurt? Was it just a broken arm or so much more? Was his car going to be drivable? And then, the more practical, also more chilling, thoughts. We don’t have health insurance, so a broken arm is catastrophic. Also Chad is the only one of us with gainful employment, so a broken arm means he won’t be able to work. Visions of our family sinking fast flew across my mind while I waited and waited to hear from him again. I called about every 10 minutes, willing him to pick up the phone. Eventually, after 30 minutes or so, a firefighter answered the phone. Chad was okay, no one else was hurt, it was just a broken arm but it was badly broken.
At this point, I started trying to find someone to watch the kids so I could be with him (COVID be damned at that point). I scrolled through my contacts, texting a few likely candidates. Gracie’s physical therapist, our family friend, proved to be the angel we needed in that moment. She came over with her boyfriend (also a family friend) and their adorable baby.
When I finally got to the ER, they were getting ready to discharge Chad. Immediately, I was accosted by someone from the billing department—not having health insurance is a big deal for them, too. She urged me to fill out financial aid paperwork immediately, that day if possible, so they could discount our bill. When she let me go back to Chad, I found him in agony. He did not want any opiates for the pain, but it was intense and unbearable. His arm was bent in the wrong spot—he had a huge lump on the side of his arm where the fracture was.
Two young guys splinted the arm and I took Chad home. He was in agony; every time he moved, he could feel his arm “clicking.” He said it felt like his lower arm was dangling. In addition to excruciating pain, he was experiencing those disturbing clicking and dangling sensations every time he moved. He walked gingerly, wincing with every step and every bump in the road.
When we got home, I called the orthopedist to make a follow-up appointment. Although the ER’s discharge paperwork said to follow up with ortho in two weeks, it also said it was a displaced, irregular, comminuted, and angulated fracture. Given the radiology report and the odd clicking and dangling sensations Chad was experiencing, I thought it prudent to get him to ortho ASAP. Luckily, they were able to see him the following Monday.
All that weekend, Chad was in agony. The smallest movements caused him intense pain. I couldn’t help but wonder if the reason the ER chose not to do surgery was because he was not insured. Chad confirmed my suspicions. He said he had heard the doctor talking to the billing person and police officer outside his room, and that they had decided to send him home because he was uninsured. Of course, since it’s illegal to deny someone care for being uninsured, there won’t be anything to that effect in writing, but it’s so messed up. He was in so much pain… they could have helped him that day and didn’t. If I hadn’t been well-versed in medical language, he could have had to wait two whole weeks for relief. Whatever happened to “do no harm”?
Luckily, the orthopedist was sympathetic to Chad’s plight, and agreed to do surgery ASAP. In fact, his colleague was able to schedule the surgery for 7:30 the following morning. Before scheduling the surgery, however, the hospital billing department called me again. “We have to get payment before the surgery. Our estimate of costs is $59,400. With the 66% self-pay discount, that leaves your cost at $19,800. We need a 50% down payment in order to book the surgery.” What the actual fuck?! Who has $10K laying around? The lady on the other end of the line “generously” offered to accept $5K as a down payment, and I called my parents. Thank god for them. They are truly lifesavers. I don’t know what we would have done without them.
After several more hiccups with the hospital, my parents’ $5,000 payment went through, and the surgery was scheduled. The following morning, both Elliot and Gracie woke up early, so we took them with us to the hospital. They weren’t allowed inside due to COVID restrictions. I kissed Chad goodbye at the door and waited anxiously for news while trying to find someone to watch the kids again so I could pick him up. Grace had a doctor appointment that morning, and after her appointment, I dumped all three kids on Jackson’s best friend’s mom. She is another angel! Even though she was working and had to take a test for work that day, she agreed without question to take the kids.
I hadn’t heard anything from the hospital at this point, but Chad called me. He sounded weak and tired but okay. When I got to the hospital, I found out that they had been calling my old land line—they had the wrong number, but no one had bothered to verify it. The surgeon had put a metal rod down the middle of his humerus with two screws at each end to hold it in place. His arm actually looked better after surgery than it had before. The giant lump on the side was gone, and even the swelling in his hand was down.
Somewhere along the way, one of Chad’s friends set up a GoFundMe for us (https://www.gofundme.com/f/help-fix-chads-arm). At first, I was reticent about accepting the help, but I soon realized we were drowning and it was the only way to get through. I still feel bad about accepting donations from everyone, but also I’m so, so grateful. People have been so generous.
Perhaps the thing that has touched me most was the generosity of all the folks I worked with at NITA. So many people there were so generous. It both warmed my heart and broke it a little. I think I hadn’t truly appreciated what a loss it was to be laid off from there until that moment. Such good, kind, fun, interesting people they are. I even received a personal message from my old boss that she would hire me back if she could. Hiring is not going to happen there for a very long time, but it definitely warmed my heart to receive that message. So it wasn’t about me. It wasn’t about my work-product. I was just a casualty of war, nothing personal. It seems vain of me to write those words, but it definitely brought a little warmth to my heart. It has been so hard to see the light, and having all those NITA people give so freely to me was truly a beacon of hope in an otherwise extremely dark year.
The medical bills are starting to come in now. I still haven’t gotten the biggest one, the $14,800 remaining on the surgery, and I haven’t gotten the bill from the surgeon either, but we did get the bill from the ER, the ambulance, and the anesthesiologist. The total amount of bills sitting on our kitchen table right now is about $6,000. We are hoping to be able to negotiate the hospital and ER bills down a little more, although perhaps not too much more. I don’t know if the anesthesiologist will give a discount for self-pay, but it would be great if he did. His bill is almost as big as the ER bill. The ambulance bill will probably have to be paid in full. Thinking about all this makes my heart beat a little faster, makes my stress level rise a lot. Lately, I’ve been emulating ostriches and sticking my head in the sand as much as possible.
There was so much bad this year. It’s almost overwhelming—losing my job, the subsequent depression, homeschooling the kids (to my great feeling of inadequacy), Chad’s mom’s illness, his brother’s babies being born prematurely, Chad’s accident. There’s probably so much more that I’m not even thinking of right now.
The bright spot, for me, was the kindness and generosity of my friends and loved ones. So many people have dropped everything to help us. So many people donated to the GoFundMe on our behalf. NITA and NightLights, an organization dedicated to respite care for special needs kids and their families, donated huge amounts. I am humbled and grateful. Thank you, friends and family and coworkers and EVERYONE. Because of you, the world is a little brighter.
Who is that girl I see Staring straight back at me? Why is my reflection Someone I don’t know?
It turns out the kids do well with school when Disney music is playing. The above lyrics are from Mulan, before the village girl becomes the great warrior she is destined to be.
I never before realized how much of my sense of self-worth was tied into my job. I have been employed since I was 14, first as a busser at TGI Friday’s, then into retail, waiting tables, being a mental health worker at a residential facility for children, being a paralegal, and finally as a legal editor for the last 13 1/2 years. I was unemployed for a few weeks last year while I was between editing jobs, but this stint since June has been the longest I’ve been unemployed since I was a teenager.
I don’t even know who I am anymore.
The days fade away into a blur of school and parenting.
I wonder how I was able to get out of bed before and get started on my work so quickly. I wonder how I managed to fit so much into each day, when now it seems I just drag from hour to hour. I wonder what quality of work I did—was I good at it? I wonder if I was chosen to be let go because of my work quality, my personality, my ability or inability to become part of the team? Or was it something else entirely that shaped their decisions of who to let go? I will never know.
I used to be entranced with Facebook, and now I can barely stand to open the app. I don’t want to hear anything about politics anymore, and it seems that’s all that is in my Facebook feed. My friends, people I know in real life, rabidly politicize everything, refusing to see the good in people on the other side of the political aisle. People I’ve never met in real life are the only ones I even want to interact with anymore. Something broke in me when Ruth Bader Ginsburg died, when within three hours both political sides were scrambling to fight again, this time over someone I truly considered a hero, a role model. She deserved better. She deserved a beautiful memorial, not a fight (or at least a memorial before the war began). I just don’t have any more fight in me.
And then there are the family troubles. Not with my side of the family—my family is great—but with Chad’s. They are having a huge family feud, and my children are the losers. My children were abandoned by their aunt and uncle, people they really cared about. My children witnessed those people yell and swear at their mother right in front of them, all while telling me that I was a shitty person who shouldn’t mention their abandonment in front of the children. (I believe the exact phrase used by my darling brother-in-law was “you’re a fucking dumbass and always have been.”) As if the kids didn’t notice that their aunt refused to see them, refused to return their texts, refused even to say goodbye before moving across the country. As if they didn’t notice their uncle angrily grabbing his child by the armpits and leaving without a hug, without a goodbye, on their last night in the state? It’s messed up.
I’m so tired of the fighting. Chad and I finally were able to find common ground again and stop fighting, but it seems the rest of the world is exploding in conflict. I just don’t have any more fight in me. Call me what you will. I don’t care anymore.
When did I become this person? When did I stop being someone I could recognize, someone with goals and dreams and ambition?
Why is my reflection someone I don’t know?
I wonder if getting a job would renew my sense of purpose. I wonder if it’s too late, if the illusion is broken, if the mirror will ever again show my true reflection. Or is this the true reflection, and the other one was an illusion?
All I want is to love and be loved—for me, for my kids, for the world. I want the reflection to show a loving and lovable person, someone who cares and someone who tries to make a difference in the world. Someone who is admirable.
After a week of sickness burning through our house like this year’s ever-present wildfires, Grace revisited the pediatrician today for another round of bloodwork. It was at her infectious disease doctor’s behest; he does not have the capability to do blood draws in his office and waiting at the hospital’s lab is an all day affair. So, to the pediatrician’s we went.
Although our whole family has had this virus to some degree, Grace has, predictably, been the sickest. She has a deep, thick cough. Her sinuses, which have been congested since her virus of March, are impassable. She has had stomach issues, and is not interested in food. She is pale and lethargic, choosing to spend most days lounging on the couch or bed. She’s got a virus and she’s got it bad.
Naturally, in these days of pandemic-pandemonium, there is one virus at the forefront of everyone’s mind. And today, for the first but surely not the last time, Grace was tested for it.
We were lucky to get in today. Children’s Hospital is doing drive-through COVID tests, but only at three locations in the city (none convenient to us). By the time the infectious disease doctor’s order went through, it was a quarter to 4, and we were fortunate to snag a 5 pm appointment across town at the main hospital.
Grace did NOT want a COVID test. She knows, as probably everyone knows by now, that the test is a nasal swab. The moment the test was mentioned she threw a fit, flatly refusing to do it. When I made the appointment, she said she wouldn’t get in the car. Her anxiety came in handy for this—she won’t let me out of her sight, so when I got in the car, she had no choice but to follow me.
We drove across town to the drive-through COVID test center serenaded by Taylor Swift. Grace tried to sing along with “Wonderland,” but soon collapsed into a coughing fit, then silence. When we got to the test center, we drove through the maze of orange cones to a newly built garage staffed with three young nurses in full PPE.
I said a little prayer of gratitude for those three young nurses. Whether they volunteered for the job or were assigned, they are risking their health and that of their loved ones to test little children for this insidious virus. I am grateful to them and to all the other healthcare workers who so selflessly work for the sickest among us.
When we drove up, there was one car ahead of us. The dad emerged from the back passenger side and went back to the driver’s seat, and a little girl, maybe 4, maybe 6, darted briefly out of the back door. She screamed as she was swabbed. Her cries echoed through the parking lot as a nurse approached our car. It was an ominous greeting.
Immediately, I told the nurse I would have to help hold Grace while she was swabbed, and would possibly need another person too. I climbed into the back seat with her, bear hugging her while she bit me repeatedly as hard as she could. Another nurse rushed over and held Grace’s head while I struggled to contain her flailing arms and legs. Though I weigh nearly three times as much as her, she struggled mightily, and it was all I could do to hold her arms tightly to her chest.
The swab was over in seconds, but the trauma will last. For both of us.
Grace sobbed as we drove away. I thought about pulling over so I could hold her, this time in a motherly embrace, but she cried, “No, please, no, let’s just go home.” She shook and shuddered in the back seat for several minutes, crying from this most recent injustice. Soon enough, she started playing with the toy they gave her, and her tears slowly ebbed.
The bites and bruises on my arm are small penance for this latest crime against my baby girl. It is traumatic for both of us when she has to be restrained for a medical procedure. I don’t feel right allowing nurses to get hurt, so I always volunteer to hold her. But it is heartbreaking. I don’t want this for her. I don’t want any of it for her. I wish I could take it away from her. I wish I could wave a magic wand and take it all away.
Grace apologized tonight for biting me. As her parent, I should probably have asked for an apology. But as a human being, I feel that I am the one who should apologize. Once again, I have forced her into a situation she dreaded, because medicine requires it and doctors have tight schedules. Once again, I held her down while someone probed her body against her will. It is no wonder this child has anxiety. Anyone would.
The bruises on my arm will fade, but the bruises on our hearts will take a little longer to heal. For both of us.