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Moving On Up

Last winter I found myself talking a lot about having to find an accessible apartment for Aleck in the future. I was looking at places on Zillow and Redfin, I was casually telling people how I really needed to find a building with a doorman and an elevator, but I kept adding a caveat, it’ll be for high school. You see, he’ll need the type of independence then that he can’t get with my place right now. I love my place but it’s a vintage two flat, it has 6 steps up and the front doors are super heavy. We will want a place where he can get in and out on his own. And the reaction was always, well how old he is now? He’s 11 and only in 5th grade, I’d answer, and then the following question was, “then why are you talking about this right now?” I wasn’t sure why I was talking about it so much except that it was clearly on my mind and my brilliant subconscious wanted to get on this project way sooner than the rest of my brain. But when Aleck broke his leg in May, the rest of me caught up quickly. Carrying him up those stairs was doable but brutal, and it’s not like he’s made of stainless steel and has handles or anything. Craig was making fun of how I couldn’t carry him up the stairs, not couldn’t, didn’t want to, as he came limping up to my back door one day explaining that I’d have to carry Aleck in today because Craig threw his back out moments before getting Aleck down his stairs. Mmmm hmmm, I don’t think so. I texted one of the most incredible men in my neighborhood who lived a block away and worked from home and agreed to be on call for me during this very complicated time. So Aleck and I sat and waited for Tim or Sergio to arrive knowing that at least I’d be physically safe to keep taking care of Aleck while he recovered from his broken tibia.

But I loved my place, I loved it’s separate dining room and vintage wood details. I loved the radiated heat, the large kitchen, and the view of this peaceful and serene neighborhood out my windows. The place was freaking Mayberry. Every morning the parents could be seen parading their kids to the local elementary school, stopping on the corners to greet their friends, drinking their coffees, carrying their scooters, and walking their dogs. I’ve never made more friends in one neighborhood, I’ve never felt more connected to the trees, the brick buildings, and my local dive bar than I did while living in Lincoln Square. I’ve never felt safer, living without another adult, walking my dog at night or before dawn, only a few blocks to Harvest Time for a last minute produce run and tying Sox up outside I knew she’d be safe, and she always was. I was on text chains with other dog parents, I would get lost in conversations even on a frigid February evening, and when I needed someone to walk Sox I had a list of people I could contact to help me out when her doggy daycare was closed on a Saturday.

Plus, I knew what a new place meant for us. It meant a doorman, highrise building, a shoebox without a washer and dryer in the unit. It meant Aleck and I would be on top of each other living together and I’d lose what little privacy I had when he was around. It would also mean a huge change in the way I run about day to day. With valet parking I could no longer run in and out because I forgot my phone, I better have the darn thing with me before I walked out the door. It means that I can’t pass around keys to my neighbors in case I lock myself out, I also better have those in my pocket at all times. It means that I’ll have to be more careful about how I plan my days, about when to throw my sheets in for a wash on an entirely different floor, and who I have coming to visit me and when. The last time I lived in a building like this I was 22 and didn’t care if the doorman saw me stumble in at 5am with glitter on my face, will I care in this new type of living?

So I started my search, buildings in Edgewater mainly, and I ran away from each unit as they reeked of retirement homes thinly veiled as apartments, which makes sense because who needs accessible buildings most of the time, older people do. I tried to make non-doorman elevator places work and thought about Aleck, coming home from school, doing some shopping, having bags in his hand, and needing help with a key to unlock the door, or trying to pull it open with his hands full on a windy Chicago day. I even put in an application on a place like that in June, and was immediately rejected because of my employment status, a freelancer without a steady paycheck just wasn’t appealing to the building owner and I was crushed. It was then that I took a break. Maybe I don’t have to move NOW. Maybe I can wait. Maybe I can get my finances in order. Maybe the right place will magically appear. Maybe I can pull on my parents’ heartstrings for help. Then, at the beginning of September I woke up one morning like someone shot me out of a cannon and the words I said were very clear, we need to get out of here before the winter. I couldn’t face another season of navigating Aleck down icy snow-covered steps and then across an icy snow-covered broken concrete pathway into my garage. That felt like asking for May 2023 all over again and I wasn’t up for it. I went back into my search full steam ahead and couldn’t find a doorman elevator building unit for rent that was in my price range or wasn’t going to be an hour commute to school. I got my finances in order, I pulled on my parents’ heart strings (or purse strings) and went back to look for a condo. I mean, I had to do what I needed to do to give Aleck the type of place where he could comfortably live, even if it meant going broke trying to do it. I started checking out Lakeview East for options and found one on Irving Park and stared the process of buying this condo. But it had a few issues of its own; the unit was almost a city block away from the elevator, the building was very congested, the front door was a revolving door or the doorman could come to the front door to open it for Aleck. At first that seemed promising but then I saw how busy the doormen were and didn’t have much hope. The bedrooms were small and I’d have to stick my office in my bedroom for the first time since I was 22 living at Clark and Fullerton. There wasn’t a walk-in shower which was disappointing as Aleck has trouble swinging his legs over the sides of a bathtub, no balconies, and I could only walk Sox using the service elevator which I was warned ran even slower than the already jam packed regular elevators. On the flip side, it had a great living room and almost separate dining room, a cute kitchen, 4 big closets and an incredible view of the lake. The building had a pool and the place was full of energy and life. I started moving forward to buy this unit.

It was the Monday of my inspection and I had just spent two hours with the inspector in my unit. There had been a leak from the upstairs unit, but it had been fixed. He found two other potential leaks in the unit as well. The bathrooms would need to be retiled almost immediately, and there was warping in the floor by one of the bathrooms indicating another potential leak. On Tuesday I got on the phone with my lawyer to discuss these issues. That’s when he told me about a laundry list of projects the building was going to be tackling over the next three years. I was up all night in panic. On Wednesday I found two units for rent in Edgewater, I had been so involved in this purchase I had missed them when they were originally posted a week earlier. I called my agent, I told him my concerns and on Friday we saw both units. When we walked into the first one we looked at each and agreed, I could live here. That afternoon I filled out the application and on Saturday I got the notice that my application had been accepted. On Sunday I got the lease, signed it, and walked into Kol Nidre services overcome with relief but also kinda in disbelief, did I really just find a place to live that has everything I want?

Yes I did! And we moved in here two weeks ago. Everywhere there are stairs in the building there is a lift because this building is fully accessible! The elevators are fast, and Sox can go on any of them when they arrive. The doormen aren’t overwhelmed and even helped me with my gear the other day. The valets are thoughtful and the wait for my car is minimal. The Chicago L is two blocks away, the bus picks up right in front, there is a beach next door that’s small enough that Aleck can easily navigate his way into a lounge chair. Plus there is an Aldi, CVS, Walgreens, Whole Foods, LA Fitness, restaurants and bars all within walking distance. It only takes me an additional 15 minutes to get Aleck to school, so a 20 minute commute in total. The bedrooms are huge, I have plenty of room for my office in mine and Aleck has room for a desk in his bedroom as well. There are 7 closets, three huge closets including a walk-in closet in my bedroom, an absolute dream come true for this clothes hoarder who loves her wardrobe. Cute kitchen, large living room, dining space, and two bathrooms finish off this gem, Aleck’s has a walk-in shower. It doesn’t even have windows up here, it has sliding doors instead which open up onto two large private balconies that overlook not only Lake Michigan but Lake Shore Drive and the entire city of Chicago, it’s an absolute dream come true. In the mornings we wake up and watch the sunrise over Lake Michigan, in the evenings we sit on the balcony and watch the sunset over the city. I honestly didn’t think I was really moving here until the moving trucks had finished emptying themselves of all my favorite things. I went to sleep that night exhausted but with the biggest smile on my face ever and the most gratitude I’ve ever had for anything in my life in my hear. This is the second best thing I’ve ever done for myself (PM me if you want to guess the first best this). I still can’t believe this is real, I kinda can’t believe I did it and how much easier everything is for Aleck and I. We just spent 4 days here, he was home sick from school, and we loved every moment of being here. I did it! I moved us, on up, to the east side, to a deluxe apartment in the sky! (cue music 😉

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Surviving Summer

At fourth of July, finally back on his feet!

It’s Monday morning on June 19th, moments before Aleck arrives at my apartment for a full week of momtertainment. That time we have in the city after Chicago Public School ends and before Chicago Park District Camp begins is always a rough time. Last summer we experimented with another local CPD facility that offers day camps for the kids, but Aleck said he’d rather be locked in solitary confinement than spend another day at that place. And with his cast on from the hairline fracture of his tibia, we didn’t have many options to keep him occupied. June is typically one of my busiest months and this June didn’t disappoint. At the end of the month, I was going up to photograph Camp CHI so I had been picking up extra days in my Aleck schedule to offset this trip and to help Craig so he could keep working. Thankfully I had that entire week without a gig so I was able to line up playdates, plan some activities, lean on my parents a bit so I could get to the gym, and already blocked off my evenings after I put Aleck to bed to get projects delivered to clients. This was going to be a very long week, but the next Monday Aleck would be starting camp and we could go back to a more regular schedule. When my phone rang that morning, I heard a very different story.

Right before Aleck arrived our local CPD camp called to tell me that Aleck would not be able to start camp the following week. They just had a meeting with their risk management team and the policy is that no camper with a cast on is allowed to attend camp. I fully looked like one of those cartoon characters who’s head just turned bright red and exploded into a million pieces while the hand is still holding the phone up to their heads. WTF. Holy shit. What are we going to do for the next two weeks? My heart was pounding so hard I could barely breathe. On the phone I started to beg, our jobs depend on Aleck going to camp, Craig cannot make a living if he has to watch Aleck day and night for the next week while I’m up at CHI. There has to be someone else we can talk to. I let my contact at the camp know that I knew this wasn’t her fault or her decision, and I know she’s a huge fan of our guy, so she agreed to help me source the right person at CPD to push this all through. After all, I explained, this isn’t just some kid who has a cast. This is a kid with a physical disability who experiences frequent brakes as part of this disability. He’s already coming to camp in a wheelchair, he’s had his wheelchair at camp every single year, and they already have an aide in place to take care of him. Truly, this is a form of discrimination due to his disability. And with Aleck we always have to ask, what if something happens again? I need to count on someplace to give my son a fun summer despite his disability and a place that will allow his parents to work.

Aleck’s cast was originally scheduled for removal on the 4th of July, that would be 8 weeks, but no one is in clinic that day, so we had to push it to July 11th. Immediately I called and left a message for his surgeon, could we have the cast removed one week earlier instead of one day later. Thankfully, the next day I heard back that Aleck was approved to get his cast off one week earlier, so on 6/27 it would be removed, just over 7 weeks after his break. Technically, they didn’t have any openings so Craig would have to be there with Aleck at 7:30am, and not a minute later otherwise that cast wasn’t going to come off. That would mean Aleck would only miss the first day of camp. Phew, that was a huge relief.

A few days later I got a call from the Chicago Park District disability office. His name was Larry and as soon as he started speaking, I knew I had met him before. Aleck was only two when we attended an adaptive bike event right near Lurie hospital, the summer after our six-week stay at the Rehabilitation Institute of Chicago, now Shirley Ryan. And he remembered me too and Aleck’s condition. Immediately I felt a bit of relief. We talked through all the reasons why risk management was denying Aleck access to camp with his cast on, and all the resources that were already in place to insure a seamless transition into camp. The usual reasons for why a camper with a cast isn’t allowed didn’t apply to Aleck. He wasn’t more unstable than normal since he’ll be sitting in a chair the whole time. This won’t put too much stress on the staff since he already has an aide. And the bottom line is this is all part of Aleck, it might happen again, and the camp needs to be prepared that Aleck isn’t a typical kid which is why we already have these systems in place to get him to summer camp. I admitted to Larry that I felt a bit funny fighting so hard for one day of camp, but if I can set a precedent then it’s all worth it. The last thing I want to do is to go through this battle all over again. There’s no guarantee that I won’t but if I win this victory maybe it’ll make the next time easier. Later that evening Larry called me back and everything had been worked out, Aleck was cleared to attend the first day of camp. The next day I got the call from the camp director, and she was joyful delivering me the news as well.

Aleck is now into his second week of camp. The cast was removed but he’s still pretty unstable right now. His surgeon is requiring him to wear his brace on his right foot, his AFO, at all times. So going to the pool he must put his swimsuit on with his brace and shoes, walk to the pool, then sit on his chair by the pool, take off the shoes and brace and socks in order to get in. Please keep in mind, Aleck isn’t doing any of this dressing and undressing. At camp it all falls on the aide, and at home it’s his parents that must do all of this work. When he needs to get out, it’s that whole process all over again. That means I still have an 11-year-old infant living with me, who can’t get out of bed unless I go and put on his socks, brace, and shoes. He’s also kind of hard to hear since we have AC window units in the apartment, and I got rid of my baby monitor ages ago. I woke up the other morning at 3:45am convinced I had heard him yell for me, my heart was racing, I was sweating, and as I went to the bathroom, I sat there quietly just listening for him again since we both share a wall with the bathroom, thankfully all was quiet.

And with a tween he’s learned the value of sleeping in this summer. He likes to go to bed around 10pm and sleep until 8:30/9:00am. However, he wants to get up when he decides to get up. This means that when he wakes up and shouts for me sometimes, I’m outside walking the dog, sometimes I’m outside doing my morning mediation, and sometimes he’s the alarm that wakes us all up. When I come in his room, he never fails to grill me on where I was, why didn’t I hear him immediately, why I didn’t come right away. Slowly he’s learning that I have other things to do in the morning, and that he needs to be patient, but I’ll be there. It must be so difficult for him to be stuck in his bed like that, it’s been going on since the break, and I was looking forward to hearing him put, put, put, out of bed by himself. But that’s not happening for the next month, so it’ll probably be August, after he goes to Camp Simcha, before I get to hear that sound of his bare feet on my floor again.

Aleck is out of the cast but not at full strength so it's easier to run around Winnemac Park in his wheelchair, good thing he's got friends to push him around.

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Give Me A Break 2023

X-Ray of Aleck's hairline fracture in his tibia.
Hairline fracture in Aleck's tibia.

This was supposed to be a blog about Aleck’s braces that he got three weeks ago. This was supposed to be where I tell you how good he did getting them on, what a champ he was, how he chose red and blue for his colors, and then enjoyed a lunch of omelets and pancakes at our favorite breakfast joint when it was all through. This was supposed to be the line where I complain a bit about how we have to put his rubber bands on him every night because he lacks the dexterity to put them in his mouth himself. Right here is where I wanted to tell you that we need to get the teeth down before we can even talk about the potential four root canals, he’s going to need to save his mouth from the fall. Right in this line though I was going to tell you that insurance is covering all the orthodonture work which is huge for us and how thankful we are that Medicaid has been a great option for our family. Right now, I want to tell you that it’s amazing how all your priorities can get thrown out the window, or in our case, the car door, with one simple (mis) step.

On 5/9 I was picking Aleck up from school when his left leg got caught in my car door, he fell backward and landed funny (hahahahahahahah…not) on his right leg. Outside of school, with only me and the dog, he screamed that his right leg was broken. He cried that he wanted to go home, but I already knew we were going to the ER. I got him on his feet and used myself like a chair to get him in my car, then climbed out from underneath him into the driver’s seat. We ran home, I left him in the car while I locked up the dog, and grabbed his iPad and charger, a sweatshirt, and some leftover cauliflower pizza…it was going to be a long night. At 6:00 pm we arrived at the ER, he texted his friends, I ate some pizza, and we watched TikTok. Before we left I felt his leg and could see the giant swollen bump protruding out from his AFO. But at Lurie Children’s Hospital, there is no one to help you move a patient from one position to another. I had to explain to the nurse that you weren’t going to get a weight on him because he wasn’t going to stand on your scale. I had to carry him from the chair onto the x-ray table, all 98lbs of him plus the weight of his shoes which have a giant lift in them, and his braces. I had to carry him from the chair onto the bed once we got checked into our room. I feel like regular hospitals have CNAs just to do this, but it was only me and the older X-ray tech in the room and no one was calling anyone to give me a hand.

We finally got into our room and fell into a Friend’s marathon to keep our spirits up. They didn’t want Aleck to eat anything until they could confirm that he wasn’t having surgery that evening. I told the very attractive, very tall, and very strong ortho resident baby that there was NO WAY anyone was performing surgery on Aleck at 9:30 pm that evening when I knew his surgeon would be in the hospital the next day, but they must follow their protocol and I have to wait for everyone to get on my page. Thank goodness my sister came to the hospital with a feast of McDonald’s and some hugs so that when they did confirm he wasn’t having surgery we could sit and eat something way more appetizing than now lukewarm cauliflower pizza. When they came in to confirm that it was a break and that Aleck would have to be in a cast for 6-8 weeks, I looked at my sister and said, “FML” and started to laugh. Aleck asked what “FML” stood for and in my quick thinking, I came up with Funny Mommy Laugh because it wasn’t funny. Can he use crutches, asked the ortho babies. No, he cannot. Can he hop and balance on one leg with assistance? No, he cannot. Are you the only one at home with him? Yes, I am. Cue the looks of horror.

The ortho babies continued to create a splint for Aleck’s leg that ran from his crotch to his ankle with a giant layer of cotton wrapped in plaster and then asked me about sending us home. By now it was 11 pm. Please have us admitted I said, for about the third time that evening. I’m not leaving this hospital without a green light from his surgeon, I’m not leaving this hospital without a care plan for when I get home. But your surgeon isn’t on call right now, they told me. Yes, I know, but you’ll be able to get ahold of her tomorrow so we shall stay until that happens.

By the time we got to our room, it was 1:30 am and we had eaten too much McDonald’s and watched too many episodes of Friends. Our nurse talked to us about having social services come in the next day to help us put a plan of care together for getting us home safely. During the evening there had already been a few conversations about not discharging us until they knew that we could take care of Aleck safely at home. We tried to get some sleep, vitals were checked around 5:45 am, and then Craig arrived around 8 am. I told him the plan; we needed a sign-off from Swaroop before we go home, and we needed a care plan so we could safely care for our now small adult-sized child in our own homes. With that, I had to go and get ready for the luncheon I was photographing in only a few hours. When I got back to the hospital Aleck had gotten a new cast, a small one from his foot to just under his knee, way better than that awful splint. However, social services had not been to our room, and it was now 5:30 pm. I asked the nurses to find me someone, I was very angry at this point. I couldn’t believe that this wasn’t anyone’s priority. When the social worker came, she had absolutely nothing for me. No transportation services, no in-home health care options, and not even a couple of big guys to help us get Aleck home. My parents’ friends are breaking bones left and right at their age and each one of them gets sent home with a care plan, with services already in place to be sure that they can safely be cared for in their homes. My guess is because this is a children’s hospital that’s not a priority. We are supposed to be professional caregivers able to lift small adults and get them safely up and down our six steps and in and out of the wheelchair. I asked the nurses if they had anyone to help with transporting and they sent up a heavier shorter woman in her 60s.

We managed to get Aleck in the car, we managed to get Aleck back to Craig’s apartment, and we also managed to fight for the two-and-a-half hours that we were together. It wasn’t pretty. I got home Wednesday night and cried for hours; I was exhausted on every level. Even though it’s a small break that requires no surgery, Craig and I are kinda screwed until the cast is off. We are working with multiple organizations trying to find help, but it all takes so long. I spoke with many last week and only today am I touching base and getting resources, over a week after the break. I had my weightlifting coach come and spot me to see if I can carry Aleck up the stairs, dead weight, and unable to hold onto me, and I can do it. On Monday my brother-in-law came over to take Aleck down the stairs so I could push him the mile in his chair to school. But on Tuesday morning when I went to call the fire department, the other free option for moving a disabled child, Aleck begged me to do it telling me he knew I could do it. There was something in his eyes that told me how important it is to him to know that I can physically take care of him. I got him down on Tuesday morning, a 6/10 rating by the judges, my dismount wasn’t pretty. On Wednesday morning I got a 10/10. But that’s one week down and we’ve got 5-7 more to go. The after-school program won’t watch Aleck in his current condition so our workdays are now cut short by over two hours. Having sleepovers to cover Aleck because I’m photographing a wedding won’t work either so Craig and I have to tag team everything together. Our families can help but my parents aren’t strong enough, so I’d have to hire someone to be at my apartment with them every time Aleck needs to move, come to the table to eat, or if he has to poop because getting him on my toilet is literally the hardest physical move of them all.

I’m still in disbelief that after a week I don’t have any help. I’m still in disbelief that one of the nation’s top-ranking children’s hospitals has no resources for families like mine, for ortho families with disabilities where something like a simple fracture can derail absolutely everything. I’m still blown away that no one at Lurie seemed to care that we physically shouldn’t be caring for our child without professional services and assistance. I’m heartbroken because this is what I was worrying about when Craig walked out my door on June 1, 2021, that I would not be able to take care of Aleck alone. I’m heartbroken because even though I’ve been training it scared me to carry my child down my stairs. I’m heartbroken because this will happen again so that means I have to find an accessible place to live like right now and I love my apartment so much.

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I Keep On Fallin’

An X-Ray of Aleck's Teeth

On Thursday, February 16th, my phone rang around 4:00 pm. It was Craig. I took a deep breath. I mean, it couldn’t be anything much about the two of us. The week before we finalized our divorce and we both seem to be moving on quite well. He told me that he got a call from school, Aleck had fallen, and he wanted me to cancel his Hebrew lessons for the afternoon. Well, Aleck falls a lot, why don’t we assess the situation before we start canceling stuff, was my answer. Craig started protesting but I told him to just call me when he got to school. But before Craig called he sent over the photo of Aleck, face all bloody, lying on the floor of the school. Fuck Hebrew lessons, I was shaking and in tears. Then Craig called. We should call our friend, the pediatric orthodontist he said, we should call Aleck’s dentist I said, so I did. His dentist wasn’t in but I spoke with the receptionist who did a great job of calming me down and helping to guide me through the next steps. She wanted me to take photos of Aleck’s mouth, send them to her, and she would tell me whether we should go to the ER or not. If we went to the ER we needed to go to Illinois Masonic because Lurie doesn’t have dental services, plus IM is where his dentist works teaching the residents there. As the photos of the inside of Aleck’s mouth dropped into my messages I knew we were going to the ER. I sent them to her anyway and she confirmed, so Craig brought Aleck there and I met them.

It was weird being back in crisis mode again, but now as separate individuals, no longer a complete family unit. However, it didn’t affect the way we operated. I stopped at Craig’s apartment first to walk Sox and grab Aleck’s IPad and Switch so we had what he needed to wait out an ER visit, while Craig checked them in and got the ball rolling in the ER. I took Aleck through the CT scan while Craig ran to pick up the prescriptions at the nearest CVS before it closed. I held Aleck down and forced him into cooperation while the nurse slapped some gauze on his torn-up chin, Craig blew up rubber gloves to make them look like turkeys and get a giggle from Aleck.

While waiting in between nurse and resident visits, Aleck was mostly on his IPad, the group chat with his classmates was going wild. Many of them had seen the fall, they were coming out of Anime club at the time, and they were all very concerned. Originally called, “Serial Killers” the group chat was changed to “RIP Aleck’s Teeth” while we were in the ER. The kids were having a blast talking about who in the class they should take teeth from to donate to Aleck’s cause. It was definitely the type of love and support he needed while the blood was still pouring out of his face.

The CT scan showed that his upper jaw bone is fractured. They got ahold of his dentist and decided that nothing was going to be done this evening. We had an appointment to see his dentist the next morning and they would probably be pulling down those two front teeth that were knocked up into his nostrils, and then brace them. As we left the ER, in about three hours’ time which is a record for any ER visit, we think this was probably the 6th one, Aleck started asking to go back to my place. Thursday evenings are Craig’s evenings and I’m pretty sure if I would have asked Craig would have sent Aleck home with me. But I wanted to prepare myself for the next 5 days. I wanted to get one more good night of sleep, I wanted to get one workout in the next morning, I wanted to do a few things for myself before I dedicated the next five days to being a full-time nurse-mommy. It would be the first time I’ve taken care of wounded Aleck without someone to tag in when I needed a break and run off to Target to get lost in the dollar section. I pulled Craig aside and he totally understood, agreeing that even though our hand-off time is 4:30 pm I’d be taking Aleck back to my place after the dentist’s office the next morning. We hugged and the boys went home.

The next morning I got in my workout, grabbed coffee and a protein bar, and headed to the dentist. They had already done an assessment of Aleck’s situation and were taking X-Rays. Nothing was going to be done right now. For the next ten days, our job is to keep away infection, keep him fed and hydrated, let the swelling go down, and let his mouth heal. In addition to the teeth that were knocked up, one tooth is also loose, and he bit down so hard when he fell that he made huge sores in his bottom lip, having bitten through it. I brought Aleck home with me, fed him some cottage cheese, made him comfortable, and placed my Instacart order of soft foods and a bottle of Old Grandad. I knew it was going to be a long 5 days.

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Ending An Era
  • Prom Dates in 1993
  • Married in 2003
  • Traveling Through Amsterdam 2006
  • Vacationing on Lake Michigan 2013
  • Damien’s Wedding 2015
  • Our Last Date, May 2021

I am writing this post the only way I know how; from my perspective, from my heart, and with a stiff glass of whiskey in my hand.

I am writing this post because we’ve built this beautiful community around the love we share for our family, especially our commitment to Aleck. When we lost our baby girl 12 years ago, when I had to labor and deliver her five-pound dead body into this world only days after posting a photo of my pregnant stomach decorated in a White Sox logo, when I had to announce then our great loss to the world, we knew we had no choice but to live out loud, to share our struggles with our community. And when our son, Aleck, was born with a rare disease we were once again spilling our story to our world and we were rewarded greatly with your messages, your words of encouragement, home-cooked meals, gift cards, resources, an adaptive bike, and during the darkest hour a large donation to keep our lights on.

I am writing this post because I feel a responsibility to share the latest and maybe the greatest struggle our family has been facing. It’s outside of hospitals, it doesn’t involve doctors, but the pain has been real.

In 2019 I hit a point in my life where everything seemed like it was exactly where I wanted it to be. Aleck was back on his feet and fully recovered from his 2018 surgery. My photo business was going strong and I even hired an intern to help take me to the next level. I was finally able to focus on myself for the first time since 2009 and to celebrate I brought myself back to the gym, back to the physically active person I had been before going through the exhausting process of starting, failing, and then finally building my family. I looked around at my friends who surrounded me with their encouragement and love. I looked at Aleck who was, and still is, thriving in school and with his friends. I had made as much peace as I could that he would be an only child. I looked in the mirror and I finally saw the reflection of myself as I wanted it to be, as it had been so many years before, staring back at me. But with all of that, when I looked in that mirror I saw a woman who wasn’t happy.

That’s when I knew a major change had to happen in my life. That’s when I knew that this future that was laid out for me at that moment wasn’t going to sustain me. That’s when I knew that something big had to change and it was going to be one of the hardest decisions I’d ever make in my life. That’s when I knew that my marriage was ending.

So we did everything a couple does when they know the end is near. Weekend getaways, couples counseling, date nights, more intimacy, but with each step we took to bring us closer I only felt farther and farther apart. Each attempt to save our relationship, save our marriage, felt like another step toward the end. In February 2020, I knew it was over.

But then March of 2020 hit and before we knew it there was a bigger crisis and my own crisis of faith would have to wait. At first, I felt lucky that Craig and I were still together. Remote learning was the WORST FRIED CHICKEN any parent has ever had to deal with, and I couldn’t do it on my own. I wouldn’t want to have been stuck inside, scared of the world, of the germs, of people dying, without a partner. I wouldn’t have wanted to cook three meals a day for over a year without someone’s help. My heart truly felt for my single friends, who had previously filled their lives with travel, friends, fun, and careers, to now be stuck inside all by themselves. At least, that’s how I felt for the first 6 months.

In February of 2021, Craig and I decided to separate. He would be moving out that June. This would give him time to find a job, to pack his stuff, to secure an apartment. Thankfully, I had also taken a job working for my friend Debbie’s family as a nanny, since Deb had passed away from cancer that December, and her husband needed someone to take her seven-year-old daughter through remote learning, give her lunch, and play with her during the long months while he prepared to move them back to his home country of Australia. I can’t imagine what life would have been like if Craig and I had been stuck in our apartment together seven days a week after having made this life-altering decision.

In June of 2021, Craig moved out just as the world opened up again and I started working full-time again after over a year. It was a total shock to the system for all of us. I spent that first year trying to figure out how to simply live in this new life, how to keep up with my jobs, how to be a single mom, and then how to be alone when Aleck and our dog Sox, left for Craig’s apartment. Craig moved about 8 blocks east of me, so the logistics of handing off have been easy but the feelings that go with it haven’t. My heart breaks and my soul feels empty every time Aleck leaves my home. He’s been my compass since the day he was born, and every direction I’ve taken up until this point has been because of him.

It has now been a year and four months since Craig and I started living separate lives. Our divorce isn’t final yet, but we’ve managed to struggle through a lot of paperwork so far. We didn’t have much to begin with so there really isn’t much to argue about, and we don’t have tremendous animosity towards each other, just working through the new boundaries this next chapter in our relationship brings. After all, we are still Aleck’s parents and are still as committed as ever to co-parenting Aleck the way we’ve always done, with his best interests at the top of our list. But now the rings have been put away, we are exploring life as single people, and trying to redefine ourselves through all of this change. Someone who knows me recently met Craig for the first time and commented on how we have the same mannerisms. She asked me how long we had been married, I answered it had been 17 years before our separation. With a knowing look, she sighed and said, “two became one.” And with my own deep sigh, I agreed. We had become one, we had quite a run, we had a long and successful marriage, and now I can only hope that we both find the happiness we seek.

Through all of this Aleck is a champ. While we experimented with schedules and handoff policies, as we tried to set up our boundaries for one another or figure out where to show up as a family and where to go our separate ways, he’s put up with it all. We had him in with a school counselor he trusted after we made the decision to separate, though we didn’t tell him until the end of May 2021, and she stayed with him through that June, until school ended. Then we transitioned to a child psychologist to continue to give him a safe space to express his feelings and any frustrations he might have with this new way of life. But if we know one thing about Aleck it’s how resilient he is, how much he’s gone through over the years, how many times we’ve rocked his world, ruined his summer, and has had to roll back into a classroom instead of walking back. He’s made of tough stuff and his psychologist discharged him last spring, he had made the adjustment to this new life without any obvious complications. Of course, these things can come in waves and who knows how he might act out as he gets older. I’m sure he’ll be in therapy as an adult, hell, we all should be if we aren’t.

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High Fiving Middle School

Aiming High
Three Days After School Started We Are Finally Ready to Tackle Middle School

Wait!!! He’s only starting 5th grade, right? Yeah, that’s what I thought when I learned at the end of last year that 5th grade at Aleck’s school is actually the beginning of middle school. This means he has a homeroom teacher and he will be switching rooms to go from subject to subject. I’m sooooo not ready for this. When I think of middle school I think of the all the hormones raging, the beginning of crushes and hiding Playboy magazines under a bed, I think of changing bodies and new smells, friend cliques and finding your place in the lunchroom. And that all may be coming, but thankfully I’m not the one who has to be ready for middle school, that’s all on Aleck.

Last year he spent the end of his year practicing how to maneuver through crowded hallways. His occupational therapist at school secured a small cart on wheels, like the one you would use for art supplies or to store tea and coffee in your kitchen. It has three levels and he spray painted it red, his signature color, which was also an OT exercise in itself. During passing periods he would go to the middle school hallways and test out pushing his cart in a crowd, loading his books in and out of his cart. Considering those weren’t his actual classmates he was passing, he did really well. His OT also worked with him to find a combination lock that would work with his limited movements. Due to the lack of dexterity, strength, and mobility in his fingers, hands, wrists, and arms, he can’t put the lock on or take it off by himself, but at least he can lock and unlock it, not having to depend on someone else to remember his code.

As I write this I’m now panicking that he doesn’t remember his code from last year, the end of 4th grade seems like a lifetime ago and it also feels like yesterday, this summer flew by way too quickly. At first we were in a panic, trying to get coverage for Aleck while Craig’s been working as a leasing agent and I was getting through the busiest month I’ve ever had since I started building my photography business. Typically, Chicago Park District camps start right as school ends, but this year there were almost three weeks before camp started which seemed out of control and ridiculous to me at the time. Then I learned about the lifeguard shortages for the pools and when we heard that Aleck’s camp was able to secure enough lifeguards for the start of camp, July 5th, it all clicked into place and I understood why the delay in camp this year. Luckily, a CPD facility not far from us was providing day camp services, basically babysitting with some activities sprinkled in, and between that and my parents, we were able to keep Aleck relatively occupied until the start of camp.

I also took some time to plan a day with Aleck each week for us to play and enjoy the summer together. As CPD camp ended Aleck went back to Camp Simcha, the special needs camp sponsored by Chai Lifeline, and flew home on the first day of school. Before camp even began, I couldn’t shake the feeling that time was flying and with this uprising middle schooler in my midst, who knows how many more times he’d want to spend a summer day just hanging with his mom, going to the dog beach, eating croissants, and playing miniature golf. There is definitely strong energy that threw panic into my guts when I found out that I no longer have an elementary school child sitting in the back seat of my car.

Aleck got home from Camp Simcha Monday evening, his plane was delayed by almost 6 hours, most of which the boys spent sitting on an airplane in the middle of a thunderstorm. He had another excellent summer, and as I unpacked his suitcase he took stock of everything he had brought home that reminded him of all the fun; the candle he made with his counselor, the mezuzah that needs a scroll, the Israeli Defense Force style camp t-shirt they wore on the day he got to fire a gun and participate in other basic training style exercises. And despite my total shock at seeing my 10-year-old holding a rifle, I was thrilled by the confidence he had when proclaiming that it was the best activity they did at camp. His aim was pretty good. Other highlights included a trip to a waterpark, competing in an Iron Chef-style cooking competition, working with Lego’s and robotics, and took another ride in a helicopter.

Chicago Park District was also another huge success this summer. He was back at River Park, walking distance from our apartment even with a dog and a wheelchair to maneuver every morning. Luckily, despite all the exhausting waitlists for camp this summer, a bunch of his friends were at River Park with him so we all had familiar faces to greet every morning and afternoon. It’s so fun to watch all the families in our neighborhood walking the kids to camp together, it makes a big city like Chicago feel like small-town America. Thankfully, they were able to secure an aide and he was an excellent addition to the summer. Aleck’s aide worked as a Special Education Classroom Assistant, SECA, at Chicago Public Schools so he had tons of experience on how to best integrate Aleck into the program. Which, it turns out, was teaching Aleck and a group of friends how to play a do-it-yourself version of Dungeons & Dragons. Definitely going to have to schedule some D&D group playdates for the fall.

However, Aleck didn’t just bring candles, mezuzahs, and memories home from camp, he also brought home a summer cold. And after two days of YouTubing his eyeballs out on the couch, chugging chicken soup from JB Deli, today he finally joined his class in their back-to-school commotion. This year is going to be a big change for all of us in Aleck’s education. Exhausted from remote learning, I told Aleck at the beginning of 4th grade that school work and staying on top of his studies was up to him, and I’d only get involved if I heard from a teacher, which meant he was in serious trouble. Turned out I barely had to move a finger to keep Aleck at the top of his class for 4th grade and he brought home very little homework. This year might not be as easy of a ride for the parents, but as always, we are ready for whatever challenges lie ahead. Good luck little buddy, you got this as always.

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Summer of Simcha

I had just finished checking Aleck’s giant red suitcase and we were waiting in the airport for the rest of the parents to finish checking in their kids. Aleck was chatting it up with the boy he had met at the barbeque the week before, his energy bouncing off the glass windows of ORD. I almost felt bad for the two counselors, dressed up as Pikachu and fuzzy chicken, responsible for getting these four boys off to Glen Spey, NY. One of the campers looked a bit apprehensive about the entire ordeal, his mom had gotten a gate pass so that she could walk him directly to the airplane. Barely grabbing Aleck’s attention, I asked if he wanted me to walk him to the gate too. He laughed in my face and went on getting to know the other three boys without missing a beat. Finally, I grabbed his little face in my hand, looked at him in the eyes and said sternly, “I’m leaving now and so are you. I won’t see you for 12 days. Give me a hug and kiss goodbye.” He obliged without much enthusiasm, and they were on their way.

From early that morning we were all part of a WhatsApp group text so we could keep tabs on their travels and know exactly when they landed at camp. A few days beforehand Aleck’s counselor, Shlomo, had given us a call and gave me his cell phone number. He told me he’d be sharing photos of Aleck throughout his time at Camp Simcha and even got a chance to chat a few times with Aleck before camp began. Each camper gets their own counselor for the entire time they are there, plus there are so many more staff members that it ends up being three staff per every camper. When I saw the photos through our chat of Aleck with the other kids and staff on the airplane I felt my first tear well up in my eyes. This was really happening, Aleck was going off to sleepaway camp for the very first time. The longest he’s been away from Craig and I was five days but that’s when he was only two years old. Since then he hasn’t gone two days without seeing us so heading on an airplane to New York was kind of a big deal, for all of us. That night I got photos delivered to my phone of Aleck in his cabin meeting the other campers in his bunk. The first photo is Aleck sitting in his wheelchair talking with two other boys who are sitting in their wheelchairs. Forget the tear, I was officially bawling. There’s never been this moment for Aleck where he could sit and be, disability and all, with other boys his own age who have had similar experiences, who have similar physical needs. I knew right then and there, Camp Simcha was a slice of heaven in the Catskills.

On the second day of camp, they brought a giant petting zoo in for the boys, I have a video of Aleck fulfilling one of his dreams of cuddling a baby duckling sitting right in his lap. Aleck and his cabin of boys went fishing together on a motorboat, they took turns riding up in a helicopter, they went zip-lining, enjoyed riding shotgun in fancy cars, and rocked out to some big-name rockstars in the Jewish community. They also did the usual camp favorites like camping in tents, singing around a campfire, making gumball machines in woodworking, making leather bracelets with their names on them, playing video games, and eating as much candy as they possibly could from the canteen. I was hearing from Aleck for the first few days, then, radio silence. He called for a half-second on Sunday night and by Wednesday night I realized I hadn’t spoken to him since. Definitely signs that he was having a great time. When we connected on Thursday, I heard the one question that showed me how much fun he was really having, “can I come back next summer?”. Great job Camp Simcha!

Now I know that a lot of these activities sound like your basic camp schedule. But I’ve experienced a lot of different summer camps and so far, there hasn’t been a camp that truly provides the level of inclusion that a boy like Aleck needs. These camps aren’t equipped to get wheelchairs up on ziplines, these camps don’t have enough trained staff who understand physical differences and can gear their activities to meet the child where they are. These camps often put kids like Aleck in a bunk separate from the other campers, these camps can offer an aide to a boy like Aleck, but without the curriculum designed for a disabled kid, they fall short of a truly inclusive experience. And since this camp is only 12 days, there is one focus and you can see it in the photos and hear it through the fun, the staff is there to give these kids the best 12 days of their lives. When I was at camp it always felt like there were so many rules, so many places we had to be, so many activities we had to do even if we didn’t want to do them. At Camp Simcha, it seems to me that the only rule is to have fun and to follow the needs and interests of each camper. The result is a truly excellent time for this group of Camp Simcha Special kids, and some truly exhausted counselors. For those who don’t know, the word, Simcha, is a Hebrew word for “joy”. It can also mean “to be high, to glow, to rejoice” and is often used to refer to special occasions and big celebrations like weddings and Bar/Bat Mitzvahs. Clearly, this is the perfect name for a place like this.

Everything at Camp Simcha was free of charge to my family. Even the hoards of candy at the canteen or the vending machines full of sodas didn’t cost us a dime. It was so easy for me to smile at Aleck and say, “of course you can go back next year,” with barely a worry for our financial situation while trying to navigate this pandemic. The application was easy, we didn’t need to apply for a scholarship or financial aid, the camp is free to all of the campers who go, and during a typical summer that’s over 400 kids from all over the United States and Canada attending Camp Simcha. Even the flights are covered! Chai Lifeline works tirelessly all year long raising money so that kids like our Smart Aleck Persin, can have the best summer camp experience ever, in addition to all of the other wonderful programming and resources they donate to families like mine constantly facing medical challenges. A friend of mine has been participating in their Bike 4 Chai program years before I even knew that Camp Simcha existed. And just this past week I was asked to speak at an event for one of their other largest fundraiser, Team Lifeline, a half marathon event that takes place in New York City and Miami every year. If I wasn’t still recovering from a hip injury due to running this past fall, I’d sign up myself right now. It’s incredible how hard so many people work to keep our heaven on earth, our new favorite place in the world, running year after year. I hope you’ll consider adding Chai Lifeline to your list of donations in honor of our special guy.

Check out these videos and if you watch closely you can see Aleck in the first video rocking out to music at about 3 minutes, then you can see him for a split second in the second video.

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406 Days Later

Ready to get back to school in person!

Today Aleck is going back to school, and like so many other kids in the Chicago Public School system, it’s his first day back in school in 406 days. And, like so many other families, we’ve made the decision to send him back to school because we decided it’s worth the risk. We are tired of fighting about YouTube or reading Big Nate comic books instead of paying attention in class. We are tired of paying for a tutor once a week just to get Aleck to concentrate on his math homework. We are tired of having him here every single day of the week. Granted, going to school two days a week isn’t going to solve all of these problems, but at least it won’t be our problem for two days a week and that is huge. Plus, the science is there to back up our decision. Even for schools that have been open all year round, they found that kids aren’t picking up COVID from each other in school, instead, they pick it up from out-of-school activities, birthday parties, family gatherings, those kinds of activities. Plus, Craig and I just got our second dose of the vaccine so we are only a few weeks away from total immunity, at least from the mainstream of the virus, and for about six months.

Poor guy has been waking up in tears for months. However, when we ask him what’s wrong he usually doesn’t have an answer for us. We decided to sign him up for weekly sessions with the school counselor, who he knows pretty well since she used to be our case manager. Giving him a one-on-one ear once a week, an adult that he doesn’t live with, someone he can complain about his parents to, or voice anything else that’s on his mind, is definitely an option he’s had no trouble sticking with. I think he enjoys his meetings with the counselor and I’m sure there’s some therapeutic benefit.

The other night he woke up in tears again, scared about going back to school. We encouraged him to ask his BFF about what school is like right now during our regular morning FaceTime sessions. He didn’t seem to have many questions and he says he’s not scared about catching COVID, but he’s a tough little dude who doesn’t easily share his fears since he’s used to being tough and just marching forward into terrifying territory. Our joke around the house is that the hardest thing for Aleck will be staying 6 feet away from his friends. They simply love to hug each other and we’ve allowed him to hug one of his friends during this past year with their masks on. His teacher and aide have been warned that this could be tricky, but they will both quickly learn.

Yesterday, when we were finished with our playdate at the Shedd, Aleck was in tears in the back seat of my car. Claiming, once again that he was scared to go back. I told him to give it a chance. I told him that if he wasn’t happy after two weeks, which would only be 4 days of in-person learning, then he could go back to being remote. I told him it would be OK. Finally, he found his voice and told me what was bothering him, he didn’t want to take the bus. Now, we are down to one car after our Subaru Forester died on our way back from Michigan at the beginning of the month. Therefore, I’m the only one with a car and since it’s a stick shift, Craig can’t drive it. I’m also working right now as a nanny. My best friend for decades passed away from cancer back in December and in February I began working for her husband and her 7-year-old daughter, Rebecca, during the week as they’ve been getting themselves ready to move to Australia, where his family still lives. This means that doing pick-up at 2:45 pm every day will be very difficult, though doable if I must. But there’s a bus, and they even have a bus aide for Aleck already. This is heads and tails better than the start of most school years. But he begged for me to drive him and if that was the one thing he was worried about then I was happy to alleive that worry on his first day back.

In other news, the Bat Suit is returning to a theater near you! To see it’s first debut in our house click here. It’s been six or seven years since Aleck has actively worn his upper body dynamic splint, the one created by his very first occupational therapist, Kaitlyn Davis, when he was just a wee little dude. Quickly, we realized how helpful this device was for getting Aleck’s hands in a more useable position and closer to his face. However, he was so little when we put it on him and forced him to wear it for different activities throughout the day, he couldn’t complain about it or voice his frustrations. I would simply sing, “Wheels on the Bus,” put it over his head, and strap his hands in while continuing his favorite tune. Two weeks ago I got to see his current OT at Shriner’s put the new frame of the Bat Suit on Aleck. I could also see his looks of disappointment and frustration, even from under his mask. He was quick to say that he didn’t want to try it on. He was quick to say that he doesn’t want to wear it or use it. He was even more adamant that I don’t take any photos of him, a battle which he ultimately lost. We asked him what bothered him about the new Bat Suit. Did it hurt him? Was it uncomfortable? The cuffs weren’t attached yet so he wasn’t able to see the full functionality of this truly awesome device, but he knew how he felt. He just didn’t want to wear it. He didn’t want other people to see him in it. He didn’t have the phrase but self-conscience was definitely the feeling that was flying. Singing “Wheels On the Bus,” was not going to distract this very self-aware 9.5-year-old.

The following week when we showed up for OT, the Bat Suit was ready, cuffs attached, and everything. Again, with much resistance, we put it on him and strapped him in. Before he had much time to complain, his OT threw her computer in front of him and we loaded up some typing games. Now, Aleck has been typing by using his left hand to prop up his right wrist. Then he uses one finger on his right hand to hunt and peck all the letters. But once we put the splint on, he was able to use both hands on the keyboard and actually play the typing games the way he’s supposed to, putting his fingers where they belong on the keyboard. During art class the next day I put it back on him. He insisted that we first turn off the camera, so we did. Craig did art class with him while I headed out to work. When I came back later that day Aleck told me how well it all went with his Bat Suit and that he even turned the camera back on, no longer feeling shy about wearing his new suit.

Some adjustments still need to be made, so it’s not ready to go back to school this week, plus we didn’t want to give Aleck too much to think about for his first week back in 406 days. But the good news is that he’s already embraced the newest installment of the Bat Suit and we are now to refer to them as his “Mario Overalls.” I made a video of him playing cards with his occupational therapist at Shriner’s Hospital for Children, where this new vest was made. Typically, when Aleck plays cards he needs something to hold the cards with and he needs a lot of help. Watch him play Uno without any assistance, it’s pretty amazing.

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Finding Your Words
Enjoying a quiet moment in the sand on the shores of Lake Michigan.

Any parent can attest that one of the major highlights of being a parent is getting to share your passions with your child. In our house, there is a constant conversation about our favorite movies, and how old Aleck has to be to really enjoy them. When we showed him The Sound of Music for the first time a few months ago he loved it so much he even sat still on the couch during the “intermission” and often references the movie during everyday conversation. He was definitely bummed to hear about the passing of Captain Von Trapp. Since Aleck is an avid reader, reading books with him at night has been an adventure together. We started reading Harry Potter a few years ago, and he made me do all the different accents of Harry, Ron, Hermoine, and Hagrid, even though I do terrible British accents. This summer we read The Adventures of Tom Sawyer together and Aleck was in a fit of laughter during the scene when Tom and Huck show up at their own funeral. Together we dove into the past of everyday America devouring a large portion of Laura Ingalls Wilder’s series, we still have a few more books left to go. When we headed up to our friend’s gorgeous cabin in Michigan this winter I took a chance and brought only two books for Aleck to chose from for our next reading adventure; The Long Winter, another LIW series book, and The Secret Garden by Frances Hodgson Burnett. I had tried to push The Secret Garden on Aleck before, he had started it in first grade and found it boring pretty quickly. But when I pulled out my copy of the book, a discarded library copy that I got from my local library when I was in the 6th grade, he agreed to give it a try. Within the first couple of chapters, we were completely transported to this beautiful Yorkshire moor and could feel the cold air streaking across our faces.

We were about halfway through the book when I found myself starting to lose interest. I started to wonder why I loved this book so much anyway. It was dragging on a bit, the main character was developing and growing, but there wasn’t much else happening. She had found the garden pretty easily, it seemed to me, and I started to worry that Aleck wasn’t going to enjoy this jewel of a memory from my childhood like I did. Then, the main character, Mary, discovers her first cousin, both of them 10 years old, who was locked away in his room from the rest of the world. Did I mention that I’m about to spoil a big part of this book for you? Well, it was written in 1911 so if you haven’t read it yet…you probably won’t. Mary’s cousin, Colin, has spent his life in bed. When he was born the doctors pronounced him an “invalid”, that his legs were crooked, that he would develop a hump on his back like his father, and that he was probably going to die any day now. Having been waited on hand and foot since birth, having people stare at him and talk about him behind his back, this made Colin a very angry and spoiled child with a temper so bad he’d regularly work himself up into a fever. Mary, who was also known for her temper and was spoiled in her previous life in India, was a perfect match for Colin. She tells him all about The Secret Garden, the garden that belonged to his mother who passed away when he was a baby. Eventually, she arranges for Colin to be brought in his “wheeled chair” out into the garden, as the weather gets warmer. As readers, we watch as Mary, Colin, and their friend Dickon work to bring the garden back to life. We see Colin’s appetite increase as he’s getting fresh air for the first time in his life. Then we see him take his first steps in that garden, realizing that there is nothing wrong with his legs, that there is no hump on his back, and as I’m reading I’m wiping the tears away from the corners of my eyes as Aleck is next to me, cheering out loud for Colin, rolling and laughing in his bed, so genuinely excited for this fictional boy.

When I got The Secret Garden I had been very sick with mononucleosis, I was 10 years old at the time, and I had been hospitalized in the ICU for a week with liver and spleen complications. One of the clearest memories I have from being in the hospital is watching my Uncle Larry put on a disposable yellow gown, a face mask, and gloves so he could come in the room to visit me. There was a chance my spleen could burst at any moment, which would have killed me, so I was under very careful surveillance, they weren’t taking any chances. After I got home I was so weak I could barely walk up the stairs to my bedroom, where I stayed for about six months. One day my mom decided to drag me out of the house and we went to the library to find some books to occupy my time, there’s only so many reruns of I Love Lucy and Leave It To Beaver one girl could take. As an adult, I can’t bear to watch a single episode of either of these shows. I saw that tired red binding sitting in the discard cart and was drawn to how old the book was, I saw some beautiful illustrations inside and decided to take it home with me. I had forgotten all of this when I started reading to Aleck, I had forgotten how the parallels of Colin’s life and my own at the time, were so comforting, as I sat in my bed wishing I had a Secret Garden to help make me strong again too.

This book has sparked all kinds of conversations between Aleck and I, at the time of the day when the most important conversations happen, right before bed. Aleck gets angry when I read the word, “invalid.” He’s not sure how to take it. With Tom Sawyer we talked a lot about the word, “nigger” and with every book written before these modern times we end up talking a lot about the word, “queer” which was very popular in literature for decades. We talk about why it’s in the books we are reading, what it meant to those people at the time, and what it means to people today, how we can’t use it in everyday conversation, and how people are offended and hurt by these words. Aleck tells me the word “invalid” has the same effect on him, it hurts him to hear that word, even though this was really the first time he had heard it. We also discuss the word, “cripple”, used in the book as well, and he doesn’t like that one any better. I turned to Aleck and I said, “people are going to use all kinds of words to describe you. It’s up to you to decide which words you want them to use. If they are a friend and they use a word that hurts you, it’s important to let them know that you don’t like that word. If they stop using it, then they are definitely a friend.” This has prompted us to talk about what words he would like people to use. I told him how I use the phrase, “muscle disorder” a lot. Then I asked him how he felt about the word, “disabled.” He doesn’t like that one either, and neither do I even though it’s a perfectly acceptable word that has been embraced by the disabled community. It’s also a word that opens doors for our family, that explains quickly that Aleck needs more physical help than his peers, but it carries such weight with it that it took me eight years to use it (see blog post here) and I still can’t say it comfortably. Aleck will need to come up with his own phrasing of who he is and what he needs to succeed. Being stuck at home for almost a year now, we haven’t run into the staring strangers on the playground, so he hasn’t needed to explain why he is who he is to some curious kiddo in the ‘hood. But reading books like this definitely helps to open these conversations and I’m confident that one day he will figure out what words work best for him.

Just like Colin in The Secret Garden, Aleck has also put on a nice amount of weight and is looking like a robust and sturdy boy for the first time in his life.
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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.

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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 😉
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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.