A Year in Review

I realize it’s been awhile since I wrote anything (my last update was literally a year ago). And I appreciate all of you who have reached out to us throughout the year to check that we were okay. We are definitely okay and have a lot to be grateful for. 

I didn’t write during the first half of this year because I just didn’t really have much to say. I was even offered an opportunity to be a guest writer in another special need mom friend's blog, and I couldn't come up with anything to write about. I like each of these posts to have some kind of emotional narrative that captures what it’s like to live this life. For the first six months of the year being isolated and quarantined at home meant we settled into a quiet slow routine. Social distancing protected Cyrus not just from Covid, but from getting sick in general, and he didn’t get sick once in 8 months! It was unusual and amazing for Cyrus, but it was also relatively boring and not fodder for a story. And during the second half of the year, we've just been insanely busy without a moment to spare. But I want to share our experiences this past year with you just the same!

I implemented emergency distance learning last spring semester, and because I was recording my lessons instead of delivering them to five different classes five different times, and because I had been directed to keep the workload light for families that were struggling in a multitude of different ways, it didn’t take as much time to prepare. It was less rewarding for certain (though I had three students that adopted me and made a point of coming to all my live office hour sessions, which made them far less monotonous), but it was also far less emotionally draining. 

And I found myself more present with my own family and that was nice. I ate lunches with my husband, and those lunches were composed of actual cooked meals rather than whatever snacks I had managed squirrel away in my desk drawers that month. I played with my children, pet my cat, went for walks, and just sang and danced a lot with children. 

For Cyrus, well, he didn’t get a whole lot out of emergency distance learning. He only had two half hour live sessions per week, plus virtual therapy sessions. He wasn’t practicing his skills, and he definitely lost some progress, but he definitely recognized his teachers and therapists on screen and enjoyed getting to see them! (Which honestly, is the part I care about more, and why I send him to school!) 

Virtual SDC class!

Graduated Pre-school!

In June, an off hand comment led me to looking up real estate listings. And between a few very very lucky stars lining up (one of which was getting a settlement from my car accident last January. Blessings in disguise!), it felt possible to maybe buy a house. Like maybe. Even during a pandemic, we were on the absolute bottom of this crazy housing market. But the husband and I agreed to try, knowing it could take dozens of offers and months and months of time before anyone might accept a low ball offer from us. 

And in the first list our realtor sent to us, the likelihood of success felt even more stark. In the entire county, there were eight houses in our price range. Eight. Of those eight, only two of them didn’t have a flight of stairs leading to the front door, and were therefore somewhat close to being almost wheelchair accessible. (They each had a step or two in on the way to the front door). 

Of those two, one sold the very next day! 

So in our initial outing, we only got to look at one house. And it was legitimately a really nice house! It had an open living area where the living room, dining room, and kitchen are really all just one large room! Which is fantastic when you have to be moving a wheelchair around from one area to the next. There were three bedrooms! Most of the houses in our range only had two, and this was so nice because it meant Eliana could have her own room without having to share with Cyrus whose breathing machines might keep her up all night. And of the three bedrooms, there was one with an adjoined bathroom that had a full tub without any doors in between the bedroom and the bathroom. That meant we could potentially install a hoist track in the ceiling to go from Cyrus’s bed to the tub. And it had a backyard with this giant beautiful tree! We really liked the house (it is even closer to the children's hospital!) and thought about making an offer on the spot. But I thought it prudent to actually see what else was out there. (Kyle may have disagreed). 

And we spent the next day looking at condos. We limited our search to ground floor units and units accessible by elevator. And we saw some really nice (slightly more affordable) condos with tons of space and three bedrooms, but every single one of them would have all been really annoying to try to live in for accessibility reasons.

First thing we learned - there’s no such thing as an actual ground floor unit in this area. The ground floor is always the parking garage. And those parking garages pack cars in like sardines. There wasn’t a single handicapped space in any of those garages, though there was often a van accessible space in the guest parking lot, but only one and usually it was already occupied when we arrived, suggesting strongly that we would always be competing with someone else for that one spot.

Parking in the assigned space always would have meant stopping the van in the aisle, unloading Cyrus and then just leaving him there in the aisle (because there was no space to tuck him between cars), then getting back in the van and parking it, and finally exiting the vehicle and retrieving Cyrus. 

And then elevators! The elevators were so small. Fitting the wheelchair and three adults in the little compartment was a squeeze. I don’t know how anyone gets their furniture into their condos using these elevators, but I figure mattresses are flexible and pianos aren’t actually that big even if they are heavy. But Cyrus’s stander? I don’t know if it would have fit. 

Cyrus's Stander

There was one complex in particular where you exited the elevator into a lobby for your floor, then you had to walk through a stairwell into the hallway that led to the actual condos. And the stairwell was a problem because it had heavy doors that were always trying to close on you. And you would open the first door, push Cyrus through, but then had to continue to hold that door open so it didn’t slam into Cyrus because there wasn’t enough space to push him past it, while trying to reach for the second door that was just slightly too far away to reach when you’re behind Cyrus. When you had both doors open, you had to hold them awkwardly, while also getting Cyrus moving fast enough to make it over the threshold. It was awkward and it was irritating.

With one exception, the condos had less wheelchair friendly layouts as well with narrow hallways or tight corners. There was one condo that had a friendly layout, but it was a really small condo with only two small bedrooms. And it felt like our current apartment was able to meet our needs better than this condo would, so it didn’t really feel worth it to move.

We could have overcome these small irritating obstacles. If we had really needed to, we could have figured it out. But we also knew that they would serve as constant and daily irritations that would make any stressful period that much more challenging and would just wear away at our emotional health and resilience over time.

The whole experience was very illuminating for us in how difficult it is to find accessible homes if you’re physically disabled in some way. Especially when you live in a hilly area. And to some extent I already knew this, but when you live it, it’s more real. And it just made me sad. 

But looking at those condos solidified one thing for us personally. We were definitely willing to make an offer on the one house! 

And if our offer was not accepted, then we were committed to waiting until there was something that did meet our needs because if we were going to buy something we should at least want to live there.

Much to our shock (and the selling realtor apparently), our offer was accepted! It is likely because they liked our offer letter that told Cyrus’s story because apparently they had refused higher offers. The whole process from looking at prices on a whim to applying for a loan to looking at houses and then getting an offer accepted - took 16 days! 

And then suddenly we had to move! I wasn’t ready! I thought we were going to have months! That’s what everyone had warned us about.

There were lots of bumps through escrow both with getting our loan finalized and then with the house itself. There were like four different instances where I was confident that it was all going to fall through. 

And right in the middle of this crazy intense process, the school started again. And if emergency distance learning took less time than a traditional teaching year, distance learning in the fall was an entirely different beast because we were now offering live instruction to our students. 

The planning load alone made me feel like a first year teacher all over again. I’ve gone back to having to stay up impossibly late making sure lessons are ready for the next day or to get grades in on time. But I also had to learn how to deliver content in this new medium of Zoom, (like how does one do physics labs when no one has the same stuff at home?!), learn how to build relationships when you can’t talk with students one on one very easily, and how to manage a virtual classroom. 

Though trying to teach high school physics is difficult when your son’s feeding pump goes off at semi-unpredictable times, or when your 18 month old daughter runs in and wants to shout her ABC’s or sing Baby Shark at your students! (They apparently love her, and told me they were okay with learning no physics whenever our childcare fell through. Sweet though they are, I happen to care about their education!). 

Luckily, I’m a tech native and not a perfectionist, our realtor was magic, the sellers of the house were incredibly kind, and the one other family that we’re in regular contact with through a nanny share was enthusiastic and kind enough to help us move! And in the end, everything worked out! And we live in a gorgeous house now!

Somehow… It’s still rather surreal.

  

We settled into a new routine. Life does not feel as quiet or slow as it did in the fall. I still get to eat lunch with my husband, but I’m definitely working full time plus extra again. Eliana still goes to the nanny share most days. Cyrus has his own Special Day Class Distance Learning! And let me tell you, his distance learning program this fall has been amazing! He loves it!

Basically, his teacher sends us a pack of art projects and lesson materials every two weeks or so. (Before you give your child’s teacher too much hell for not doing this for you, keep in mind this teacher only has like seven students total).  And then during the zoom class, she does the videos, songs, directions, and movements that they are trying to teach the students. But she directs Kyle in how to do the activities with Cyrus! So now, instead of a nurse guiding him through his art projects, he gets to do it with dad!

SDC class in the Fall!

He totally lit up this fall with this kind of instruction, and dad is his new favorite person all over again. 

We did pretty well until November, during which time we all got sick (with a rhinovirus - not Covid) at the same time. It made for a really rough week, but we all recovered. Or so we thought. 

Just a normal [sick] day.

Feel better, Cyrus!

Cyrus ended up relapsing and getting pneumonia. It is likely that he aspirated his own phlegm from the sickness into his lungs, then bacteria grew in that fluid, and then turned into pneumonia. We managed to keep him home for a week caring for him ourselves, but then after a really rough night we sent him to the emergency room. He was the sickest I’ve honestly ever seen him, and I was beyond terrified. But as sick as he was, he also ended up having a remarkably fast recovery once he was in the hospital with round the clock care and on antibiotics. 

He was home for a few days. Four or five, and he was breathing better, but he wasn’t coming back. Like he wasn’t engaging or smiling. He was flat and emotionless. Usually when he’s been sick, he’ll have this phase of what I call “post illness joy”. And that just wasn’t there. Then there was a day where he was crying constantly and his belly and one of his arms were really swollen. And he had stopped pooping entirely. 

His sister dotes on him no matter how he's feeling! <3

She is just the sweetest!

Worried about a blockage in his GI track, he went back to the hospital. They determined there was no physical blockage, but rather just a build up of gas that wasn’t able to make its way out of his system for reasons that were unclear. They did a ton of tests, and they found something! 

He had c. diff! 

Fucking c. diff! 

Ugh!! It made sense (the antibiotic course makes him vulnerable to it), but man I was pissed! So, now we’re back to operating on c. diff protocols. He has a new med that initially has to be given four times a day. We are changing diapers with disposable gloves, and afterwards hand sanitizer is not enough. Hands have to be washed for thirty seconds minimum. The floor and the wrestling mats are getting steam cleaned regularly. Anything that gets any poop on it has to be cleaned with bleach, and his laundry has to be separated from everyone else’s, and clothes that get any poop on it has to be bleached.

Do you know how hard it is to get bleach wipes right now? I’m sure you do.

Anyway, once we got Cyrus’s new meds (with a lot of grief from our insurance company - I wrote a rant about it, but I’ll spare you), he got to come home again. And we did finally see some peaks of that post illness joy!

There's your smile!

The last two weeks have been a lot better for all of us really. (Well, Elli is in the last phase of a bottle wean and hating it, but otherwise, she’s loving life!). We were finally able to start unpacking again and everyone has a room now! We finished Elli’s room last week. We’ve finally figured out how to organize the kitchen to get all the pots and pans in a cupboard. And we’re just starting to put pictures up on the walls! It’s starting to really come together!

Overall, we feel rather fortunate during these times, and we try to take nothing for granted.

We are wishing everyone so much love, health and resilience for all the foreseeable future! Much love!!