Tuesday, December 15, 2020
Ten Years in the Blink of an Eye; Just Kidding, It Felt Exactly Like Ten Years
Thursday, December 10, 2020
Happy Birthday, Falcon!
The fiercest girl I know is turning 13 this week. We used to call her Pink on this blog, but she has stretched well beyond the limits of such a diminutive name. I asked her what she wanted to be called instead, and she said, "Falcon, no, Dragon!" and then settled on Falcon, so that is what I shall call her.
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One of Falcon's dragons. |
In her earliest years, I did my best to limit her exposure to all the girly-fied clothes and toys, but she still came home from daycare wanting to wear sparkly shoes and live in a castle. It wasn't that I thought those things were bad so much as I simply worried that I wouldn't be able to relate to a kid who liked them. Looking back, I know how stupid I was. As a parent, I can do whatever I can to try to ensure the kids have access a wide range of ideas and beliefs and they will still pick and choose what makes the most sense to them based on a whole bunch of different influences, some of which I simply can't control.
So, I let Falcon wear princess dresses and sparkly shoes, and she accumulated so many pink things over the first several years of her life, it looked like a unicorn had barfed in her closet. Once, when she was 3 or 4, she tried to get me to buy her duct tape and feminine pads because both were pink, and it didn't matter WHAT they were used for. Lucky for both of us, I put my foot down when she wanted to paint her room in our new house pink (we went with pale yellow) because eventually, she stopped liking pink. She stopped liking it so much that if an article of clothes or a notebook cover or anything else has even a hint of it, she will refuse it on the spot.
When you're a "neurotypical" kid coming after an older sibling with autism, life can be challenging. For years, poor Falcon couldn't cry when she was hurt or upset because it would trigger her brother Sky, making it nearly impossible for us to comfort her. On her birthday, Sky would become so anxious and dysregulated, that he would insist on "helping" her open her presents and then "showing her how to use her toys" before she even had a chance to play with them. Often she had to sit and patiently wait for him to finish playing with her new toys before she could try them. She spent much of her early years catering to her older brother's needs--sitting in waiting rooms at therapy sessions and ALWAYS playing what he wanted to play exactly how he wanted to play it because he had so little capacity for flexibility.
Then along came Stow, who bookended her with even more autism, and before any of us could catch our breath, Ren's spine went south.
Last winter, when Ren was still recovering from spine surgery number seven, I tried to get the kids to help me put out the Christmas lights. Before he could even get out the door, Sky started obsessing about all the things we might do wrong, got overwhelmed, and shut himself in his room to play computer games. Meanwhile, Stow came outside with a shovel in his hand and started digging small holes in the yard. But, Falcon? Falcon was there steady and ready to help. I told her I was sorry that this was how things were, but looking at her and thinking about all the ways she has stepped up over the years, I knew that we could build one hell of a matriarchy, the two of us.
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More Falcon art. |
Falcon is fierce because when Stow has a meltdown, she runs toward him and not away from him, even though we've asked her a thousand times to focus on protecting herself. She runs toward him because she knows she can help calm him in a way no one else can.
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And more... |
Falcon is fierce because she never, ever backs down on what she believes is right, and she will go to the mat for a friend or even for someone she doesn't know all that well if she thinks they need a hand.
But, maybe most of all, Falcon is fierce because she is the most empathetic and sensitive person I know, and instead of trying to hide her feelings or toughen up, she continues to look for ways to be herself and express those feelings. Lately, that has meant that she writes and illustrates the most fantastic stories about warrior girls who go on amazing journeys to save the weak and mistreated. Her empathy reaches beyond humans--I've never met a cat or dog or horse that didn't immediately love and respond positively to her.
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Most mornings I come out to find Falcon reading or writing surrounded by the cats. |
Falcon is fierce, and to me, she's also just a little bit magical. In our world of concrete, black and white thinkers who can sometimes take language way too literally or just a little bit wrong, Falcon has a knack for knowing the very thing I will think is funny. We have a long list of past moments with the boys that we remind each other of when things are a bit too intense around here. The other day, for example, out of the blue, Stow said, "My balls reflect better than anyone else in my whole class." Needless to say, it took us a minute to figure out that he was talking about his awesome goalie skills in soccer (He meant to say, "I deflect balls better than anyone else in my class.") Sometimes she just has to say a single word, and we're both rolling on the floor. Falcon also always mixes the pancake or waffle batter on the weekends, comes up with more baking and craft schemes than I ever could, and is the first cheerful face I see every morning. I honestly don't think I could be luckier.
As you're going about your business this week, please send some positive vibes for this amazing girl so she has an amazing birthday free of brotherly meltdowns!
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Falcon's picture of Stow's favorite panda. |
Wednesday, September 2, 2020
Please Be Nice to My Kid
Third grade was hard for Stow. After a brilliant first six weeks, something happened on his bus, and his behavior spiraled downward in a way that was hard for all of us to get a handle on. By December he had been moved to a self-contained classroom for part of the day, by late February we added one-on-one aide support, and on March 13th he left school for the weekend never to return (thanks to COVID-19). We don't know how the rest of third grade would have gone with the help of the aides, but with the shift to remote learning, we found ourselves cast adrift as we struggled to get him to engage with his teachers and classmates. It's hard to imagine how fourth grade will go, but I expect a wild ride on re-entry and plenty of bumps along the way.
Other kids have always been hard for Stow to figure out, but the gap between him and his classmates grows each year. As kids get older and more aware of their peers and what it means to be cool and fit in, kids like Stow find it harder to "pass" as neurotypical. Stow's day to day life at school isn't like everyone else's. He gets pulled out of class throughout the day so his special ed team can work to help him handle the stress and social overload of school. When he doesn't understand a peer interaction, he can overreact, and his fight or flight instinct kicks in. He misreads verbal AND nonverbal cues. He gets too close to people and talks to them about things that don't make a lot of sense because he doesn't always realize that they can't see inside his head. When he's gets really upset, he cusses like a sailor in order to make sure people around him understand just how mad he is.
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This is how he'd like to go to school on the first day. |
Sending him back to school next week feels a bit like throwing him to the wolves.*** But we also know that this is what we need to do. Stow struggled to learn anything academically with remote learning because online class meetings were too much for him. And, despite our best efforts, school at home didn't provide the degree of structure that he so desperately craves. Most importantly, though, he still needs lots of practice with peer interactions and self regulation, and this is something we simply can't duplicate at home. He needs to be in school with his peers, trying, failing, and learning from his mistakes.
In other words, our only real choice is to throw him to the wolves and hope that the wolves turn out to be very, very kind.
So, please, be nice to my kid and encourage your kids to be nice to him, too. I know it's a lot to ask at times, but please support the quirky ones, the loud ones, the ones who misbehave. Be patient with the kid who interrupts repeatedly, who asks you a thousand questions about your power tools, or who tells you too much about his favorite Lego guy even though he's too old to behave like that, and you're really busy doing something else. When a kid panics or yells or swears or makes a terribly-timed or inappropriate joke that makes no sense, please consider that maybe he's not really trying to be a jerk, that maybe he just really needs help or wants to be your friend.
It's hard to send a child out into the world when you know how much they will struggle, and I'm not above begging when I say this: please, please, please be nice to my kid and to all the other kids like him. Because goodness knows they are working hard than most of us will ever know to do the best they can in a world that isn't really made for them.
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"I'm nice." |
* Sorry. This blog post isn't about how we came to the decision to send them back to in-person school. I don't have the energy to write that post right now, but suffice it to say that we feel confident they will be safe or we wouldn't be doing it.
** I'm not going to debate this. Again, too tired.
***Don't get me wrong. He has amazing supports in place and a strong "IEP team;" it's just, you know, hard.
Friday, August 7, 2020
Karate Mama
You probably remember that Stow started doing karate just under two years ago (and that he had a totally awesome Nerf Karate Panda party for his eighth birthday). Well, he has continued to do karate, and since so much of Stow's life and routine has been turned upside down by the pandemic, we really wanted to make sure that he could still do it even during the shut down. Fortunately, he had the chance to keep up with lessons by following videos and practicing at home. And, once it was deemed safe for classes to start in person (with safety and social distancing protocols in place), we decided to slowly reintegrate him; we figured that his anxieties about the coronavirus and about socializing and about change would be enough to cause his head to explode if we just threw him back in to classes (that now looked very different due to COVID-related changes). So, the head of the karate school, Mr. N, kindly agreed to give Stow private lessons until he was ready to rejoin the group classes.
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Stow practicing at home during the shut down. |
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Taro being entirely unhelpful. |
Initially, we thought he would do a couple of one-on-one lessons and then rejoin the classes, but as time has passed, the factors that cause Stow to struggle with karate have become clear. It has also become clear that he isn't entirely ready to rejoin his peers. Stow goes from having a terrific class on a Monday to having a disastrous one on a Wednesday. Ren and I could literally do the exact same thing to prepare Stow on both days and get vastly different results. One day, he could do all of the forms and call out the steps in order, and the next he might wander around the mat, crawl on the ground, or run out of the building. Since listening to instructors and showing respect are important parts of karate, the days when Stow doesn't behave are hard on everyone.
It takes about three months of consistent practice and doing well in class to advance from one "color" belt to the next, and there's always a point along the way where we really don't know if Stow will make it. While Stow will agree that he likes karate when he's doing it, and while he has progressed well with the forms, karate is hard for him because leaving the house is hard for him. In fact, if he had his way, he'd probably never leave the house at all. The house is a controlled and safe environment where he can get deep into a world he's created and where he doesn't have to deal with all of the chaos of other people's unpredictability. He doesn't have to figure out what to do with the fear, frustration, and confusion dealing with others causes him. Stow is very much a fight or flight responder when he's overwhelmed, and pretty much anything can overwhelm him.
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Stow at a one-on-one practice. |
Though he has never admitted it, I am SURE all of this is frustrating for Mr. N. Fortunately, Mr. N has been teaching karate for a long time, and once he realized that we were committed to doing right by Stow while also not coddling him, he has worked hard to understand how to reach him. And since I know Mr. N is on board with trying to figure out how to help Stow succeed at karate, it's a little easier for me to feel ok pushing Stow out of his comfort zone.
That's how I found myself taking karate classes. To avoid a repeat of back-to-back classes where Stow refused to participate, Ren and I made a social story, talked about expectations, and provided opportunities for reward. When none of that worked, I unexpectedly announced, "Well, if you're not going to have a lesson, fine. At least I can."
Not knowing how Mr. N would feel about this sudden change of plans, I followed up with, "I mean, if it's ok with Mr. N."
"Sure," he said. "Cool."
And, that was the beginning of my career as an out-of-shape, inflexible karate mama.
Once Stow realized I was serious, he joined me on the floor. We did the warm up and the practice punches I'd watched him do a million times before. Then we moved into various stance drills and hand combinations. Two things surprised me. First, karate is really good exercise. And, second, it's a lot harder than it looks, especially for people with coordination challenges (LOL). I left my first karate practice with a whole new appreciation for what Stow has accomplished.
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Some of Stow's belts (he has two more and will soon have another). |
I doubt I will ever get my own karate belt, but I am super proud that Stow has been able to do what it takes to achieve his next belt (RED!!) in a couple of weeks. I am also beyond grateful to Mr. N. It's hard to find a coach willing to teach Stow, and his willingness to keep trying means the world to us, even if Stow doesn't entirely understand how lucky he is.
Wednesday, August 5, 2020
We Haven’t Had Spine Issues for a Whole Year, and I’m Pretty Sure That Triggered the Plague
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Ren's rods. There are five of them just to be safe. |
Sometimes you don't realize the load you've been carrying until you aren't carrying it any more. Probably the biggest difference between Ren before surgery #7 and Ren after surgery #7 is that he was suddenly back in our lives again. For years, he spent much of the time we were all home lying in bed or on the couch while I handled child management and dinner prep. He often couldn't come to the kids' events because sitting on classroom chairs or bleachers, standing, or walking were too much for him. While I was becoming familiar with the restaurants and shops around town, and while I was driving kids to events in cities near and far, he was home, practically confined to the four walls of our house. When the back stopped hurting, we suddenly found ourselves together again, trying to put the pieces of our marriage and family back into place. Often that meant me introducing him to a place I've been many times but he'd never been before.
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Gratuitous picture of the cat sitting on a puzzle Pink made me stay up half the night to finish. |
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False bottom tissue box where Pink stashed candy and wrappers. |
Second, some things are worth sticking out. For months and months and months, I wasn't sure Ren and I were going to make it because his pain and my depression made it nearly impossible for us to support each other. On top of that, for years and years, I wasn't sure his back would ever allow him to get to a place where we could enjoy things like travel or hiking again. So many years of uncertainty taught us how to stick it out, though, and I'm glad that we both kept trying. I'm absolutely sure that if either of us was slightly less stubborn, we wouldn't be together today discovering what this life after things fall apart can look like.
And, third, you really just never know, so you might as well try to live in the moment. The past 8 or so years have been hard, and it has taken awhile for me to believe that maybe, just maybe, the other shoe isn't going to drop this time. (I mean, unless you count the whole pandemic thing, which some days totally feels like my fault since surely MY bad luck is the reason this is all happening. I mean, we finally have a summer where someone doesn't need a surgery or a hospitalization, and I finally have tenure, so OF COURSE there's a worldwide plague). It's weird to be on the other side of so many years of chaos and back-to-back emergencies. I'm finding I'm having to rediscover how to "human" again. I am learning how to do things like have hobbies and enjoy down time with the kids (I've done a lot of decoupage and puzzles; and hiking--lots of hiking).
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Can you have too many decoupage boxes? Asking for a friend. |
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I may have a problem. That, or I may just need to figure out new things to decoupage. |
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Ooooh, round box! |
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Puzzle for Sky's room. |
*In some ways, that is wishful thinking, since we know he has impacted levels in his neck that will most likely one day need attention, but for now, we choose not to worry about those.
** Lol. Not really, but maybe at LEAST enough to keep from another break!
Saturday, August 1, 2020
How to Take a Hike
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Every time, the argument would go something like this:
Me--"Jeeze, Sky, would you PLEASE stop pointing out all the things Stow might do wrong? You are going to trigger him!"Sky -- "I don't understand why you think he will be ok on this hike. You KNOW something is going to upset him or he's going to get tired and want to quit."Me-- "Ugh, Sky, why are you doing this? You are old enough to be supportive! Besides, HE'S not the one having a meltdown right now; you are!!"Sky -- "I don't understand why you won't just help me!"
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During the phone camera struggle. No children or phones were harmed in the inadvertent taking of this photo. |
Sunday, July 12, 2020
Camp Chronicles
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Ren on a recent hike. |
Of course, just because Ren's spine seemed able to handle camping, that didn't mean the kids could. When I suggested we give it a try, Ren was skeptical. He thought it all sounded like Too. Much. Trouble. I guess packing up your car to go sleep on the ground somewhere just for fun, does seem a bit strange, but I refused to let his Debbie-downer attitude deter me. After all, I had a plan.
Step one, put up the tent. As a way of breaking the monotony of long days at home during quarantine, back in April, I convinced Ren to put up our tent in the back yard. Stow loved it. He spent his afternoon playing video games and Lego in it and then insisted that Sky spend the night with him there. When it was time to take it down, he protested strenuously. Turns out tents help him feel safe and calm. Getting that kind of a reaction from Stow was an unexpected coup. Ren has a hard time saying no to anything that helps Stow chill.
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Brothers' back-yard campout |
Setting up camp that afternoon, we could only find three sleeping bags, but we were too exhausted by the heat to worry about the other two. I mean, three out of five's not so bad, right? Ren and I gave the kids the sleeping bags and shared a single blanket. I had on long sleeves and long pants, so I figured I'd be fine, but I've never been able to convince Ren to dress for the weather. (One January, he wore flip flops and a t-shirt to do a whole house move in -20 degrees and snow.) He's not as young as he used to be, though, so the cold woke him at 3 am and reminded him of how much his back hates sleeping on the ground. Not long after, he bailed on me. With no sleeping bag and none of Ren's body heat, camping became WAY less fun for me, too. Even though neither of us made it until morning, the kids did, and Stow came in for breakfast begging for more.
Step three, take the show on the road. Nearby. We are fortunate to live in an area that has many state parks and forest preserves nearby, so for the next step, we went camping at a site less than twenty minutes from our house. We left after dinner and got home before lunch; start to finish, we were gone for about 16 hours.
That evening, as I waited in line at the camp office so we could get our site permit, I couldn't help but notice the guy in front of me who was taking FOREVER to decide where he wanted to spend the night. He was dressed head to toe in worn camouflage and had handmade bracelets on every visible body joint. His wild gray hair shot out from under his hat in all directions, and he had white crocs on his tanned and otherwise bare feet. As I listened to him tell the guy in the office about the fun he had last time and about how his daughter was going to join him around 10 pm, I glanced at the parking lot and noticed his run-down, white minivan (from which he'd inexplicably peeled off or covered the Ford logo), which was missing a row of seats and packed to the ceiling with junk. My already piqued anxiety shot through the roof, and I suddenly became convinced that this whole camping idea was a terrible mistake.
Once checked in, we went in search of our spot. As we wove our way around the narrow roads looking for it, Sky pointed out how small all the sites seemed to be. I didn't know a lot about what I'd reserved other than that it had a lake view. I was trying to be optimistic, but Sky's tendency to voice my anxieties was making it hard. "Mom, this isn't at all like where I went camping for Scouts. There are hardly any trees around the camp sites." "There are people everywhere!" "Why'd you pick one next to a swamp? There'll be mosquitoes!" When we pulled in to #47 right next to the run-down, white Ford, I decided Sky was right. We were doomed.
Camo-man had his back hatch open and was unloading what had to be a tree's worth of chopped wood. With the song "El Shaddai" on repeat on his tiny radio, he continued to pull things out of the back of his van while he yelled at someone in the front seat to help. At one point, he got out a bugle and attempted a song. Once we had our stuff out of the car, Ren moved it so that it was between his site and ours. That didn't stop Dalton from coming over and introducing himself and his grandson, though. Stow was thrilled to find another kid his age, and soon he was hanging at Dalton's campsite helping chop wood and gather sticks for their fire. We spent the rest of the night watching Stow and Pink go from our campsite to theirs or having Dalton and his grandson come to ours. By the time our fire died down it was well past midnight, and I felt duly chastened for my uncharitable first impressions of Dalton (though I don't feel at all guilty about my strong animosity toward his bugle or the "El Shaddai" marathon he put us through.)
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Early morning on the lake. |
This low-stakes first run turned out to be a pretty brilliant idea. We learned some important lessons like:
-- You should always travel with your own vinyl table cloth so that Stow won't freak out about bugs, andWe also learned that when we go camping, our car looks a lot like the one in the opening sequence on the Beverly Hillbillies, and finding things in it is almost impossible. So, a few days after our trip, we went to Home Depot and bought a couple of the awesome storage boxes Dalton had in the back of his minivan.
--You can't trust Ren to bring the right stuff for sleeping or you will end up with too few air mattresses and, inexplicably, a handheld vacuum.
We've gone camping again since then, and we are in the process of identifying the prettiest camping sites we can find for future trips. We're working on pushing Stow out of his comfort zone re. hiking. (It turns out that he does A LOT better when there are no bugs.) And, Pink and Sky are learning to be more patient with the process. Things still aren't perfect, but the last camping trip was the first time we had the right amount of sleeping bags and mattresses for everyone, so I am feeling pretty hopeful that we might just figure out how to do this after all!
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Bug-free hiking is the life for me (Stow)! |
Sunday, July 5, 2020
Summer of COVID-19
I know we are not the only family going through this particular reorientation, and I also know that it didn't start with the summer. But, it has gotten harder now that the kids are out of school, especially since I'm supposed to be working on my research. We are always in each other's space, and we all seem to cycle through pandemic-caused anxiety or depression pretty regularly. The lack of clarity about when this will end makes things harder; it's a lot to process. Some days I find the changes so overwhelming, I don't know how I will keep going.
But other days, like today, I feel like maybe I have things figured out. I/We have adopted some practices during quarantine and social distancing that I/we didn't have the time to do as much before, and when I think about where we were as a family and how things were going with me and Ren a year ago, I am amazed and even a little glad that the pandemic came along to remind me to slow the heck down.*
So, here's what I've been doing. I'm curious to hear what you all are up to and how you're handling this, too.
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Sunset over soy field. |
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Country road. |
2. Family hikes -- Last summer, when we went to Colorado, nobody died, and everyone proved their affinity for exploring the outdoors. So, since the big trip we had planned to France and Italy fell through, Ren and I decided that this would be our summer to visit as many state parks and forest preserves as we can, either on day hikes or on overnight campouts.
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Three kids hiking. |
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Very hot Stow with towel. |
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The kids can't believe I planned this one. Why would anyone intentionally buy so many veggies?! |
5. Writing -- You wouldn't know it from my painfully long silences here on the blog, but I have been writing a lot during the weeks we've been isolated from work and friends. During my teens and early 20s, I kept a journal. (NONE of what I wrote back then is worth being seen by anyone other than me, and it's even hard for ME to read it.) Once I was married and had kids, I started writing fiction and this blog and somehow lost the ability or the desire to journal. When the pandemic hit, though, I realized I needed to record what was happening, if not for future generations, then to help me remember this weird and challenging time. I fear that most of what I write in my journal is uninspired drivel, but writing has kept me from completely losing my mind, so that seems good. The problem with all of these journals from my 20s and now is that they need a good generation or two to marinate, so I am hoping that they won't be read by my kids or my grandkids. Maybe by the time my great grandkids come along, they'll seem insightful!
How about you guys? Are you all doing ok? How have you been holding together?
* Don't get me wrong, there is a lot that is really hard about this, especially given how challenging change and surprises can be for kids on the autism spectrum, but I am choosing not to write about that stuff right now. Also, COVID-19 sucks, so if we could have avoided it altogether, OBVIOUSLY that would have been better.
**Beef bowl
Saturday, May 30, 2020
Right Ball
Since then, we've had four school Chromebooks (for the younger two kids) crash and my work computer go kaput. We've also had a PS4, an iPad, and a kindle stop working. Pink has started referring to our house as a tech black hole. The only way I finally managed to get the internet to work fast enough for me to teach online was by using an ethernet cable (thanks, IT!!) long enough to snake through the living room, through my study (which had been taken over by the kids), and down the steps to my temporary office in the basement. Even then, when conditions weren't right--and almost ALWAYS related to Zoom--the internet for the whole house would go down. The weirdest day was when my Zoom meeting worked, but no other internet in the house worked.
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My ethernet cable making its way in the world. |
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The days are long! |
Talk about pandemic readiness skills! Every time Ren has a spine surgery, we go from doing tons of activities to doing nothing. The world around us keeps going, but we freeze in place. Depending on the surgery, this can last anywhere from a couple of weeks to several months. If you've read my posts from those times, you know that there is always a moment where I worry that things will never be ok again. I worry that the surgery and all of the trauma surrounding it have taken us so far out of our "normal" lives that we might never find our way back. But, every single time we have come out the other side wiser--and a little more weathered--but ok. The waiting is the hardest part, but I am learning to lean into it and to believe that everything is going to be ok. It's going to look different. It may not be easy. Some of us will lose more than others along the way, but somehow it will be ok.
I'm also trying to laugh. A lot. This (see pic below) made me laugh yesterday. I don't know why I didn't see it before. I'm sure it has been in the garage FOREVER. Maybe I just didn't pay attention. In Japanese, it says denkyuu, or light bulbs. And, to be fair, the word for baseball is yaKYUU using the same kanji character, but I haven't laughed this hard in a long time.
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Right ball |
Right ball, you guys. Right ball.
** Also, this post is completely insignificant in light of what is happening to black people all across our country right now. Please, listen to black voices, support them and don't ask them to tell you how to help. Stand with them, listen to them, and let them tell you their experiences without being questioned. Also, here are some places you can help.