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.