Game On

When it finally became clear that the Coronavirus wasn’t simply going to be a punchline in a stand-up routine, we knew it was inevitable that Aleck’s procedure on April 6th would be postponed indefinitely. Let’s be fair, it was kind of too perfect. I mean, they moved heaven and earth so he could have it on the first day of spring break and therefore have the entire week to recover without missing any school, and maybe even make it to a Passover seder, as long as it was at our place. Just our luck, we thought, when we think we are about to stumble into some good timing everything just stumbles instead.

On June 3rd Chicago officially “re-opened”, whatever that really means. Elected surgeries and procedures are back up and running and you can eat outside at a restaurant, and that about sums it up here. So we waited for the call from Aleck’s surgeon to let us know when we would be able to reschedule. A voicemail from the nurse proposed waiting 4-6 months to have it done, but we had various reasons why we didn’t want to wait that long. We had already flown past the year and a half mark recommended by Shriner’s in Philadelphia, concerned about the amount of bone growth over the existing hardware. In 4-6 months Aleck will hopefully be back at school. The last time he was in school surrounded by his friends he had barely made his way out of his wheelchair after cracking his femur this past December. If school is in session this fall it would be nice for him to walk down the halls and leave the wheelchair at home. You should have seen how excited some of his friends were to see him up and walking like himself for the first time, of course, all of this was over Zoom meetings and FaceTime playdate, only a few of them have seen him in person.

When the doctor’s nurse called me back and offered me June 22nd instead, I jumped at the date. Two years and one day from his last surgery and since school gets out today, June 18th, once again he won’t miss anything. We skipped camp this year for a myriad of reasons, mostly that swimming wasn’t happening which is his favorite part, but also because of how few kids they were admitting we wanted to save those spaces for parents who really needed it. Plus, they say he’ll be back on his feet without assistance in about two weeks, but that’s always a guess and for Aleck recovery seems to be longer than the average patient. Most likely due to the very low muscle tone in his legs that comes with his condition, Arthrogryposis Multiplex Congenita. It took him three months to get him walking after his fall this winter, and we are still working on getting him back to full strength. Right now he can walk about three blocks, but broken up and with long breaks in between. But since this isn’t corrective surgery, or anything as severe as a break, we are hoping for a much easier recovery.

We’ve been under a heavier quarantine since about two weeks before to be sure that none of us pick up anything that could derail all of this hard work. Corona or not, even an itty bitty cold could bring this all to a screeching halt. They had recommended keeping him out of school and off his feet for about five days, so we will be back on the couch offering him up the best reward for his bravery we could possibly give him, as much time playing Minecraft and Super Marioas he wants. We are encouraging him to keep his eye on the prize, but e’s definitely anxious about this surgery. He’s acting up in all sorts of ways that we hadn’t seen in the previous months, and we are having some stressful late-night conversations where you can really see the concern on his face. The worst this is that he’s having accidents, pee accidents, either during his class meetings or while he’s on tech time. When we potty trained him, we never had to look back, he was golden holding his own golden showers. Only since we’ve gotten confirmation of the procedure did these accidents start flowing so I’m guessing they are related, I can’t get an answer out of Aleck, but I don’t think he even understands how deeply he’s bothered right now waiting for Monday to happen.

One afternoon, after we discovered one of these incidents, I decided to throw him into the shower before dinner. With his big brown eyes, he begged me for a bath, something we hadn’t done in months. Recently we got a removable shower head and combining that with a shower stool for him to sit on in the bathtub has been a game-changer. Having to deadlift Aleck in and out of the tub as he’s been getting his strength back isn’t just physically challenging, it’s always teetering on the verge of terrifying, moving as slowly as possible so that I don’t drop his wet, slippery, body on the hard bathroom tile. Now we assist him as he climbs in the tub, he sits down on the stool, and I can get him clean in no time. On this day I gave in to his request and even let him direct how much bubble mixture was poured into the bath. When we were done Craig asked me why I was rewarding him for his bad behavior, the pee accident, by giving him what he wanted, a luxurious bubble bath. I told him that I wasn’t rewarding, I was comforting. Aleck has been such a trooper with being locked up in our apartment, missing school, missing his friends, not getting to hug his family, that I’m sure this upcoming surgery is what is really bothering him and I can’t say that I blame him.

Welcome to surgery in the time of COVID-19. We were so excited to be at Shriner’s because both parents can sleepover with their child, unlike Lurie and Shirley Ryan that only have room for one parent. However, due to the new restrictions, only one of us can stay overnight at the hospital, so it’ll be me as usual. Even though Aleck and Craig have gotten even closer during our quarantine, I’m still the one he goes to when he wants comfort. Originally we were told that Aleck would get a rapid COVID test when we arrive and one of us would get a test later that day, whoever was sleeping over. But since it wouldn’t be rapid by the time we got our results back the surgery would be over and we would be home. Craig decided to take some initiative and reached out to our internist for a prescription for the two of us to get tested ahead of time. Yesterday we pulled into the drive-through testing center and got that reached super long q-tip shoved up our nostrils. Tomorrow Aleck will go to Shriner’s for his test, the policies are changing so rapidly we can barely keep up, but it’s better that we all know where we stand before we show up at 5:30am for surgery.

In the meantime, we are trying to take his mind off Monday morning. We have a giant 8 person tent set up in our backyard and camped out the other night. Today, after his last meeting at school, we are going to head for a day of swimming at my parents’ house, but they need to stay away from us for just one more day. Father’s Day will be spent at home, just the three of us, as we huddle together one more time enjoying that last bit of calm before another storm. But this is the last one on the horizon. After this, the skies for Aleck look pretty clear. I can’t anticipate what may come but I do know that we aren’t going to put him back under the knife again unless we absolutely have to. This was much easier when he didn’t understand what was happening, and he’s never going to walk and move as his friends do. He has a disability, and that’s OK, we just want to keep giving him the best shot at an independent life with as little pain as possible. You know, what everyone wants for their child.

The Lucky Ones

On our way to wish my sister a happy birthday, Corona style.

From what I can tell most people I know fall into one of two categories during this difficult time. They are either totally overwhelmed with both parents working full-time jobs and trying to get their children through constantly evolving e-learning schedules to fill out the rest of the school year, or they are bored. Now, if you are bored there’s clearly a TON of things to do according to my Facebook feed, my Instagram scrolling, the onslaught of “helpful” emails or links sent by friends to be sure that I don’t miss the Indigo Girls broadcasting live or that I’m taking advantage of the overwhelming amount of online classes I can take right now brought to you by everyone from Lin Manuel-Miranda to the mom I knew from preschool up all hours into the night making face masks. There is so much noise coming at us all at once that I regularly want to put my hands over my ears and start chanting, “la, la, la, la, la” just to block it all out. I mean, have I hit my quota on Zoom happy hours or Zoom double dates? Am I FaceTiming my friends enough to keep up the sanity? Did I ever take that virtual tour of the Louvre? And why oh why aren’t I acting like the creative I claim to be and pushing out a ridiculous amount of heartfelt and groundbreaking content since I don’t have any jobs coming in, which means that as the breadwinner for my family I’m barely scoring croutons?

But we are lucky. We have one 8-year-old at home who isn’t accustomed to his freedom like those teenagers clawing at their front doors. We have two parents, one with a part-time job with flexible hours and the other who has enough personal work to keep her occupied but definitely not employed. We have a dog who demands to be walked five times a day. We have family close by who we can see even if they sit in their car and we stand on the sidewalk to visit (this is oddly fulfilling…even in the rain). Aleck is a total technology junkie, so Zoom meetings, Google Classroom, online learning, it’s his dream come true. Sox, our pup, has become a replacement sibling for him and another outlet for downtime. Cuddles with Sox on his bed are just about the best reward for finishing his work early.

We know there are families out there putting themselves at risk every day, with kids at home, and sometimes a spouse who is also working full time which makes this situation perfectly unmanageable and draining on all fronts. Please know that we are thinking of you and that not once, not for a second, are we complaining about all that we are missing being stuck at home. I don’t think I will ever look at another healthcare worker in the same way. Thank you for continuing to turn your lives completely upside down for us all.

About a month ago, right after my last post, we decided to really sit down and address Aleck’s complaining about walking (you can read and see the video here). Craig examined the bottom and sides of his feet since he was constantly complaining about them. Turns out, after a day of walking, they were all red. Lightbulb. “Aleck,” I began, “are you putting all of your weight on the sides of your feet to keep yourself upright?” He shrugged his shoulders. “Do you know that your legs are strong enough to hold you up now?” Another non-committal shrug. “Aleck, are you afraid that your legs can’t hold you up anymore and that you are going to fall again?” This time, a definite nod in agreement. To protect his repairing femur (click here if you missed this story), Aleck was putting all of his weight on the sides of his feet, keeping them curled up underneath him. They were bearing the brunt of his body weight and therefore, they were hurting. I continued, “Aleck, your legs are strong. Your femur is healed. They can hold you, I promise. Now, repeat after me, ‘my legs are strong'” and we began chanting it together.

The next day was a whole other Aleck. No more screaming in the morning, no more complaining, no more tears. As I helped him out of bed in the morning we said it together, “my legs are strong” making our way to the bathroom, making our way to the living room. Now he’s doing great. There is absolutely no more complaining of pain anywhere. He can walk about a block before he starts to moan, so we take the chair along with Sox, once a day, and after we’ve reached almost a block, he sits in his chair. Sometimes he likes to use his chair as a walker, pushing it up the street. At home he can go to the bathroom by himself again, he can get in and out of his chair at the table again, and he can even jump up and down with excitement in the middle of the kitchen again. It’s made our shelter-in-place a lot more manageable for all of us. My step count on my Fitbit is down a few notches and I’m just fine with it.

I am concerned with his gait, or maybe that’s terrified, we both are really. His hips are tight so he’s turning that right leg out again which is making me mental. We correct him constantly and I’ve sent the videos to his physical therapists, so I’m waiting to see what they say. When he reads to himself during the day we put him on the floor on his tummy to help get a stretch in those hips, and he’s really cooperative about it. But he gets frustrated with our constant prompting and we get frustrated thinking about all we’ve been through to help his walking, to give him more stability, and to give him the best pair of legs the kid can stand on. Unfortunately, we can’t hide the traces of fear and panic in our voices when we say, “turn that right foot forward Aleck.” After a few heart to hearts he understands that it’s not about telling him he’s doing something wrong, rather it’s about us trying to avoid yet another painful surgery in his future because if it was up to me, he’d never have another surgery on legs ever again. Life is too short to choose to “shelter-in-place” if we don’t have to.

Videos of Aleck Walking!

Walking forward after a walk with Sox.
He likes to walk and push his chair for about a block before planting his tush down in it.
And a view from behind 😉

Getting Through

On FaceTime with Grandma

With everyone stuck in their homes during this huge pandemic that has taken our normal lives hostage for the unforeseen future, there is so much content being put out on social media sites, news sites, and eblasts about all the appropriate topics; COVID-19, staying home, how to clean, how to stay calm, how to keep your kids occupied, resources on the web to save your sanity. In the middle of all this repetitive noise I’ve seen a few posts from families like mine watching all the chaos unfold and saying, hey, this is actually nothing new for us. Any medical family can tell you that they’ve had to practice “social distancing” for extended periods of time while they were recovering from surgeries or cancer treatments. We’ve done two full stints of stuck at home for six weeks at a time, or even better, stuck in a hospital for six weeks. And of course, we have friends who have been forced to “self-quarantine” for months at a time. The big difference for us is that this time we can’t have any visitors and we are not the one family watching summer unfold from our windows while everyone else is outside living their lives. Now we are all in this together, and it’s getting pretty official. The best we can do is just get through it and hope to come out on the other side.

Craig and I like to call these periods of time, “getting through”, very creative I know but it works. Because that’s all you need to do, you just need to get through it. That may look very different for every family. When we do it we pack our schedule if we can, that makes the days just fly by and we fall into bed too exhausted to worry about absolutely anything. If we require the use of the now legal in the great state of Illinois to get through some moments of heart-stopping, gut-wrenching panic that comes out of nowhere swinging, then we do that. If we need to use our time to put our heads on a pillow, then we do that. And if we need to throw our hands up in the air when someone is shedding tears over his spelling words (his best subject in school), then we do what we need to get through. There is no judgment when you are in a “getting through.” There is no right or wrong way to hold onto your own sanity. Though we do have a few tips that have worked well for us.

Connect with people. Email and social media is one way to connect but trust me when I say it’s not enough. Text is OK, but that’s not enough either. There is something special about hearing another voice coming to you, about seeing someone’s face react to a story or joke. Call people, listen to the sound of their voice and have someone listening to yours. FaceTime/Duo/Zoom and do it as much as you can. We’ve added one during breakfast so Aleck can visit with friends, Zoom lunch with at least 15 other kids from his class, an entire section of our schedule before dinner dedicated to relatives only, and then taking calls here and there during the day when the people who’s faces we want to see are available. When we were recovering from surgery we’d have as many friends and family over as possible for hugs and company, but since we can’t be the consummate hosts we love to be, this is the next best thing.

You need to make some kind of a schedule, and I don’t just mean for your kids. If you are a two-parent household and both parents are home, this schedule will be your lifeline. Yes, it’s a great idea to work on it with your kids if that’s appropriate, it’s much harder for them to argue the schedule when they put it together with your input. For Aleck, it gives him those times to look forward to. He schedules his tech time with his buddies and that way they are ready and waiting for each other. But what’s really helpful is giving each other alone time. If you saw my totally insane they are going to take me away schedule I put together, you might have been ready to call the asylum yourself. But it’s day 4 and it’s evolved with the skeleton of the original still in place. Craig and I each get chunks of time ALONE. We don’t question what each other is doing during our personal times, they are to be handled as we want, but knowing when they are coming keeps us sane as well. If both parents are working at home, that’s still the time when one person is overseeing the kids/kid/infant/toddler/terrorist/teenager/tween. With time-sensitive conference calls or deadlines these times may need to be shifted, and so be it. But at least get an outline of when you know you can close the door, hide in the basement, and make that phone call or finally catch up on The Handmaid’s Tale without anyone calling your name, spouses included.

Appreciate each other. Boy, this is a tough one, don’t you think? Especially when you are stuck in one space for a long period of time. Craig and I always joke that we are so much better in a crisis than we are during normal business hours. We are more careful to say “please” and “thank you”, we are courteous to each other without prompting. However, when the crisis is over its usually back to that base level of expectation, that we should all be doing our daily tasks and chores without so many expressions of praise and gratitude. Taking that moment to thank your spouse when they stay up late to set-up the Crock-Pot for a Coq Au Vin (without the bacon of course), letting them know that their effort was appreciated will help encourage more delicious slow-cooked dinners (hint, hint…yum).

Recognize when you are being an asshole because you will be one at many different times. For me, I know exactly when that happens. I go marching through the house and start shouting about each thing I see that’s not where I want it to be, tasks left unfinished right in the middle of the living room, and time is running out (or at least for the day). My heart is beating quickly, I can feel the flush rising up in my cheeks, and that tone in my voice is very familiar. I’m being an asshole. And when I’m done ranting and raving through every room of the house, I need to do whatever at that moment to get myself back to baseline. Last night I did a yoga DVD that was not great, but it got me breathing again. When it was all over I turned to Craig and I apologized for how I had acted. I didn’t promise not to do it again, I’m going to do it again, I’m going to act like an asshole again, and I’m going to apologize for my behavior again, and Craig’s going to do the same. Locked up with someone you love, this is just how it unfolds. I have a very vivid memory of Craig and I chucking Aleck’s stuffed animals at each other over Aleck’s crib at Lurie after he had his tonsils taken out, with all the force I could muster. Just try not to kill each other and say I’m sorry. We are all in this together.

Do not worry too much about school. Let’s get real, the school year is over. Our chances of going back to school before September are pretty minuscule at this point. Accommodations will have to be made for everyone in the entire country, we are all in this together. If you have small children then the learning we are doing with our children is mostly to get them through every day so that they don’t go crazy at home. But if you are working on an assignment and you see the fight coming, you can always stop the activity. Grading will be a joke, no one is going to care all that much if the work isn’t completed or up to your usual level especially for elementary school kids. We are parents and most of us are not trained, educators. We also have our own jobs that we are desperately trying to hold onto right now. So put their headphones on, let them watch Brainpop or Mo Willems drawing, and give yourself the chance to step away and get your own stuff done. Or forget the French worksheets and opt for a cuddle session instead if your work schedule allows. Make it fun, make it as easy as possible, and don’t worry what that Tiger Mom down the street is doing.

Wear shoes when you are inside! This may sound silly, staying at home and being barefoot (insert misogynistic joke here) might feel like one of your only treats about being stuck. But your back won’t be happy. I keep a pair of Dansko clogs that I use for my indoor shoes. When I’m stuck in a hospital a pair of sneakers that I don’t adore are perfect in case of uncontrolled bodily fluids. Our bodies aren’t meant to stand on hard floors without any support, find a pair of shoes to give you that lift you need each and every day.

You are doing the best you can. I know you are. You are a good person and you will get through this somehow. But don’t count down the days, we don’t know how long we will be here. And don’t take your frustrations out at your friends on social media, they are also frustrated and scared just like you. Be kind to everyone you come in (distant) contact with, we are all carrying this burden of fear of the unknown together. Somedays you’ll feel like you’ve got this all under control and other days you’ll feel like you’ve been kicked in the gut by the US Women’s soccer team. Take comfort that whatever happens, tomorrow is a new day and you’ll probably feel better about it.

Meanwhile, Aleck started taking independent steps just over a week ago. He’s still complaining a lot about pain and stiffness, and his gait is far from his baseline. We just started back at physical therapy on 2/26 and of course, it’s now over until further notice. Today we got the call we’ve been waiting for, all elective surgeries have been canceled including Aleck’s. I’m worried about him reverting to turning out that right leg, basically ruining the work that surgery did in 2018. I’m also concerned about getting the hardware out before the bones grow over, but this decision was taken out of our hands. The best-laid plans…

Here you will see two videos of Aleck walking the same route we make him walk every day. Just up and down the side of our house. He walks inside too, from room to room, sometimes in the walker, sometimes on his own. He’s more than happy to wake us up in the morning barefoot as he did on Sunday, yet he will scream that he can’t make it across our dining room. It’s exhausting. You can see for yourself in the two videos below, they are only two days apart.

Here is Aleck walking down the side of our building acting like his goofy self. Not too bad, I mean at least he’s walking, am I right?
Only two days later, standing by the gate, refusing to walk until I come to him and hold his hands the entire way there. That’s how it is inside our house too, you never know which walking Aleck you are going to get.

F 2020

This would have made the perfect holiday card, am I right? It was taken on our anniversary this year at the Chicago Botanic Gardens. At this moment we were just so relieved to be out of the house and doing something new, something that could be fun and special. But in classic 2020 style Aleck complained for almost the entire time we were there and by the end of the evening, all the “Joy” had been sucked right out of me. See how easy it is to pretend that things are great? Because in this one moment they really are, and then like everything else, it all falls apart. But we all try to capture these seconds of bliss, both on our phones and in our hearts.

On December 31, 2019, Aleck fell on a patch of ice and cracked his femur. We felt this could be one of two signs; that this could be a year of healing since technically the break came on the day before 2020, therefore we’d be starting 2020 off with actively healing his leg. Or this could be a sign that 2020 was going to be one of the worst years we’ve ever experienced. With the holiday cards rolling in the theme is the same everywhere, this was a horrific year beyond all of our wildest imaginations. For me, December is normally filled with sparkle and electricity, you can feel the energy everywhere you go as people are celebrating, getting together, toasting to that in life which keeps us going. It’s also my birthday month, so I get that tingle the minute the calendar turns to the first, an extra spring in my step, a feeling of anticipation of excitement yet to come. This December there is no spring in my step. There is no sparkle of electricity. There is no energy. Despite the advertising world’s best efforts to push it through our screens, no one is surprising their loved one with a Lexus for the holidays.

F this year, F 2020, F broken legs which we had two of this year, F this pandemic which didn’t have to be so bad if we had decent leadership in this country, F our current administration that couldn’t care less for our well being while they stuff their wallets, F remote learning which is a non-stop drain in our households, F social distance get-togethers where I can’t hug my parents or my friends, F grocery delivery services who can’t pick out decent produce to save their lives, F pandemic pregnancies when so many women are struggling with infertility, F online webinars which are clearly for people who don’t have young children at home, F Black Friday deals where everything is sold out before you even open your browser, F those people who decided to “pandemic” in warm climates or fancy RV’s as the rest of us are struggling to pay our rent or mortgage and many more are facing eviction, F “pivoting” when you’ve put decades of energy into building the career you really love just to have it all pulled out from underneath you, F Giving Tuesday when you are standing in lines for food handouts yourselves, F people who claim that wearing a mask doesn’t help as they continue to crowd our hospitals and spread this virus with no regret, F worrying about how much screen time our kids are getting when they can’t go play with their friends, F cancer which has taken three loved ones from my life in the past 9 months, F Zoom funerals where we can’t be there to comfort those in pain or get comfort for our own pain, F making the most out of this situation because it Fing stinks and there’s no sugar coating it.

Now 2021 is not going to be a picnic, we have barely begun to feel the economic effects of COVID-19, and if I was a betting person I’d say that things are still going to get worse before they get better. We may have vaccines, but we also have a long road to go before they are properly distributed and administered to our communities. As of now, if you are under the age of 16, there’s no vaccine for you. Watching my feed I see boys and girls with Arthrogryposis struggling for their lives after becoming infected with COVID. This might not be the case if Aleck was to get infected, just like with everyone else, if you are healthy then there’s a good chance you’ll be OK, but there’s also the chance that you won’t. We’ve had people close to us, friends and family members, who have successfully fought and recovered from this virus. But we also see the stories of those who were young, healthy, and didn’t have that same success. In a way, 2020 is far from over. In fact, I suggest we postpone starting 2021 and simply call it 2020 v2.0. Even though we throw out our old calendars, we never throw away the problems and issues that were attached to those years. This is not a clean slate, this is not the year to start over and make those lofty goals, this will be another year of just surviving, and that, alone, is already a lofty goal.

Happy Fing New Year.