I woke up Sunday morning in a total panic, like a high school kid who just remembered my 25-page term paper on Great Expectations was due that day and I hadn’t even cracked open the spine. It was 5:00 am and I couldn’t get myself settled and back to sleep. Listening to the roar of the air conditioner unit next to my bed I felt like I could hear Aleck crying out for me, even though one quick look at the baby monitor and I knew it was all in my head. Lying there I ran through all the things I was supposed to have already accomplished and couldn’t come up with anything that would grip me this hard. I mean, I’ve been a bit lax with my email but I’ve been keeping up with my clients and their immediate needs. So a few portrait sessions next month hadn’t gotten their official estimates sent out yet, I’ve had a few things on my plate and work wise the last two weeks have been non-stop. Taking some deep breaths I tried to make myself comfortable again between my sheets, but eventually, I knew what had me so rattled, on Tuesday Aleck’s cast was coming off and we’d be checking into the Shirley Ryan Ability Lab for intensive inpatient rehabilitation. That means that Aleck, and mostly Craig, will be living in this slightly friendlier than a hospital setting so that Aleck could get 3-4 hours of therapy a day instead of 4 hours of therapy a week. We’ve got 5 weeks until school starts and want to get him back on his feet and as strong as possible which means staying in this inpatient program for as long as possible.
Holy cow, that went fast, right? And it certainly wasn’t quiet or boring around here. Like the total extroverts we are, we’ve had visitors and friends around every single day, even play dates for Aleck. Most parents walk in with their kid thinking, “we won’t be here long, not much he can do right,” and then we pull out the Nintendo Switch we got thanks to the generous donors at Chai Lifeline, and they can’t get their kids out of here, sometimes they can’t even get their husbands out of here. We’ve seen more friends this summer than we probably do most summers for the simple fact that we are stuck in one place, that and how could you not want to come see Aleck in this crazy splint. His spirits have been great, he’s almost completely conquered Super Mario Odyssey, and we may have seen part of his brain leaking out through his ears…his head does feel a bit mushy 😉 The dinners have been incredible, delicious takeout, easy to heat up meals through the website, and of course our personal favorite, anything made at home. Thanks so much to everyone who’s helped us out during this time.
Our bags are packed, well mostly. We have our egg crate for a decent night’s sleep, that was a lifesaver at Lurie. Toiletries, books, games, snacks featuring every flavor Pringle imaginable, a travel french press with ground coffee since the parents get nothing from food services even though they are living there too, nightlights, lovies, and any and all clothes and shoes that you wouldn’t mind getting thrown up on. Aleck, however, has new shoes since he had just grown out of his right before surgery. I’ve been running all over the city and ordering all over the interwebs trying to figure out what kind of shoes we will need. When his cast comes off he’ll be fitted with an AFO, an ankle-foot orthotic, and it’s been years since we’ve used them. The shoes have to completely velcro with a pretty flat footbed. In the past we’ve just had to take out the insoles to make them fit, however, we aren’t really sure what’s going to work since he’s no longer a wee bitty boy. Craig will be going to Lurie Outpatient with at least 4 pairs of shoes for fitting the AFO and I’m hoping they roll out of there with one pair on, instead of one size on one foot and one on the other. But I won’t be there to deal with that since I’ll be working July 31, August 1st, and then taking off for Camp Chi on the 3rd. I can feel Aleck’s sweet little fingers like a vice grip on my guts, as I explained to him that daddy will be spending most of the time with him at the Shirl. The two of them are very close and Craig has spent the last 3 years being the man on the ground with all of Aleck’s therapists. Originally I was relieved not to be in the weeds for round two of this process, on round one we checked in on Aleck’s first birthday. This time we are checking in the day after Craig’s birthday, so it feels appropriate that he’s leading the charge, leaving me feeling a bit more on the sidelines. I spent the first 3 years of Aleck’s life next to him every second of the day for so many casting sessions, procedures, treatments, 6 weeks at the old Rehabilitation Institute of Chicago, and four different surgeries. Craig has gotten really good with staying on top of the teams and keeping Aleck in check, but one thing was once again clear with this last hospital stay, no one comforts Aleck like his mommy. When he’s upset Craig likes to distract him, that works too. But when he really needs help he needs to feel me next to him, the weight of my hand on his head, the smell of my breath when my face is nice and close to his. Truly the only way to get him calm when the pain is simply unbearable.
I’ve scheduled three-night stays for each week he’s in there, except for the first week, which is usually the hardest week of all. I’m anticipating that this time they’ll have a much easier time there since we know what to expect and since the building is brand new. No more vegetative state roommates to haunt you through the night, no more PCT’s (patient care technicians) turning on all the lights at 2:00 am to move your roommate, the TV is actually visible instead of a 15 inch hanging from the ceiling, and the cafeteria is still only open until 8 pm which for me meant that after feeding baby Aleck dinner and putting him down for bed, I only had the vending machines left to choose from for sustenance. I’ve spoken with his favorite PT, we made sure we are back with the same social worker, and I even ran into an old and dear friend of ours who works there who can’t wait to see us. These two boys will be given quite the hero’s welcome when they arrive, and the first few days will be kinda nuts. I’ll be coming over after jobs as many evenings as I can, and it’s all going to be exhausting. The question that keeps coming up and up is if Aleck will start school with his classmates. I truly believe that the first day of school is precedent setting for the entire year. There is just something about being there that can’t be made up for throughout the entire year. An energy, a feeling, a shared experience, it’s quite unique and we don’t want him to miss it. Whether he’s in a wheelchair or using a walking, it’s important that we get him there, to be with his aide for the first time and establish his seat in first grade. Unfortunately, his old aide got a new position with the school, a higher one with more responsibility, though really Aleck was certainly no vacay. Poor guy would look exhausted by 2 pm. They have a very special bond, a mutual care for one another almost as if they were peers. Watching them play video games together was a blast. Last week we took Aleck to school, in the splint and lying down in his wheelchair to meet his new aide. Seems like a really nice guy who can truly understand Aleck’s languages: Apple & Mario. I want to do everything I can to be sure they start the year off right as well.
Please feel free to come and visit us at the Shirl. Contact Craig on his cell phone to coordinate around Aleck’s therapy schedule, they’d love to see you. And wish us luck, once again, because we still have quite a road ahead of us.
