Let The Storm Rage On

If I had written this post ten days ago, I would have called it the Eye of the Storm. June through December felt like one long never ending test of endurance, which I refer to as The Storm. Like as soon as we had one challenge behind us, and thought just maybe we could breathe for awhile, something else would fall out of the sky. It got to the point where it was almost funny – in a hysterical kind’ve way.

On several occasions during this time, several of my friends in various aspects of my life asked what exactly was going on, not to challenge me, but rather to better understand my struggle. But I would just freeze. Like I didn’t actually know the answer to the question. I was so primed to deal with just the day, I could barely remember what was going on yesterday, let alone a week ago. Perhaps I was so traumatized that I blocked it out, though I’m sure there’s something about memory issues while being pregnant as well. (At least, I haven’t had time to be anxious about the pregnancy).

But the first six weeks of 2019 have been a true respite. Cyrus’s seizures seemed to settle, his gut infection (C. difficile) seems to have finally cleared up after a relapse and a nine-week course of antibiotics. We got that van which has made both traveling and day to day transport far easier! And even at work, I was implementing a project where all the planning was front loaded and all the grading done live in class, so I had almost no homework for the six weeks!

But when you’re about to have a baby, you know it’s going to get crazy again – that you’re not actually out of the storm, that you’re still going to get caught up in the rest of it. And that’s why I was calling it the “Eye of the Storm”. I also embraced this period, riding it out and appreciated every single second of it, knowing that come early March all our routines would have to be reestablished and figured out. But apparently, we didn’t have until early March. It seems that we exited that seeming calm period a bit earlier than anticipated starting with a jarring phone call.

The classroom phone mostly irritates me when it rings. It’s usually something really quick and easy to take care of, but it often disrupts my flow when I’m in the middle of an explanation or helping a student. It’s also not something you can ignore. We’re about a third of the way through an 85-minute block period, and the phone rings. 

My classroom phone also has caller ID on it – it tells you which room on campus is calling, though there are so many rooms and I don’t really know where everyone is, so it’s not always helpful in identifying who’s calling. But I noticed immediately that this call was an external number, which is weird. 

A split second later, I realize it’s my husband’s cell. 

My heart stops.

He never calls me on the classroom phone. Before I pick up I already know this is not good news, that we are in trouble. He tells me that Cyrus is having an active status seizure at school, that he’s already been seizing for twenty minutes, hasn’t completely stopped yet even with two doses of emergency meds, and that the school has called for an ambulance. He is in San Jose at work, and nowhere nearby. He asks me what I think we should do. 

I have no idea. I am frozen. I’m fighting back tears, and there’s a restless class of thirty teenagers behind me getting more squirrelly by the second.

On reflection, my panic somewhat surprises me. Like if there’s one thing I should be used to by now it’s seizures. But you see, Cyrus hasn’t had a seizure like this since he was six months old and was barely medicated at the time. And what I know of his disorder’s progression is that these types of events may become more and more common until they completely take over. It felt like a sign that this trend (which admittedly can take years to build up) is beginning. And I don’t want to face that reality. 

“Kari? Are you still there?” 

I asked him to give me ten to fifteen minutes to figure out what I was going to do and I would call him back. And what did I do after hanging up? 

I finished my lesson. 

Because what else do I ever do except carry on?

But about twenty minutes in, I am wondering what the hell I am doing. I needed to figure out how to leave, I needed to call my husband back. I needed to head to the hospital. But I just kept going. It wasn’t that the lesson was more important in that moment, but more like I was still completely panicking and teaching a lesson is something that I can apparently do on autopilot, without thinking at all. And I was in shock or something.

Then at the end of the activity, I was able to stop myself and didn’t start the last arc of the lesson. I told the class I had just been called with a family emergency, and that I needed to figure out how to leave. I did break down a bit, and started crying, at which point three kids ran up to give me a hug. Because they are the sweetest. And spent the last fifteen minutes of the block arranging for coverage for the rest of the day. 

I arrived at the hospital before Cyrus as he had longer to travel than myself. And I anxiously waited in the pediatric waiting room. When he was finally wheeled in with his hair plastered up against his scalp with what I assume was sweat, looking totally out of it, my anxiety vanished. He was awake, definitely disoriented, but not actively seizing and definitely aware. Once I could see that, I was fine. Totally fine. Though not excited to spend the afternoon in the Emergency Room.

It only took him a few hours to turn back into his usual active, vocal, and happy self. Which is honestly a faster recovery than some of his shorter two minute seizures. I imagine the emergency meds helped a lot with his fast recovery. We were sent home feeling emotionally exhausted, but feeling confident that all was as well as it ever is. 

Friday, I kept my cell in my pocket, knowing that seizures tend to show up in clusters. But Cyrus had a good day at school where they spoiled him with extra attention for his fourth birthday. And I was able to finish my last day of work, say good-bye to my students, before heading out on maternity leave for the rest of the semester.

But upon arrival at home, one of our cats whom we knew wasn’t doing well, took a sudden and drastic turn for the worst and had to be put to sleep. This was especially really hard on my husband, as she’s been with him for almost twenty years! So, he was really down, and I felt so helpless to support him feeling so drained and stressed myself. I could only offer a hand to hold so to speak.

And after a weekend of guests whose presence was healing, we took the other cat to the vet due to some other concerning symptoms and behaviors that we’ve been noticing for the last month or so, but had honestly been neglecting in favor of the cat that we knew was dying. We learned she has diabetes and needs insulin injections twice a day every day, potentially for the rest of her life. And for whatever reason, it was this event that broke me. Where I felt like everything was collapsing in on me, and I felt completely inadequate to meet the needs of everyone around me.

This was the moment where I felt like I couldn’t carry on.

But of course, this moment is fleeting. And the next morning, we’re doing exactly that - carrying on. 

Tuesday morning involved taking Cyrus to the lab for some bloodwork for his neurologist, then making a stop at Target to pick up insulin for the cat from the pharmacy. My husband had also asked me to pick up something for dinner a few other things that we needed.

This ended up being slightly more challenging than I had really anticipated, as I have a child with a wheelchair and my shopping list consists of more than a few items that are just going to be too heavy for me to carry in a hand basket. So, here I am pushing a full-on shopping cart in front of me with my left arm, and pulling Cyrus backwards in his wheelchair with my right arm, while clearly eight and a half months pregnant (other configurations were attempted, but did not work). It was slow going – especially around corners, but we made our way through the store. I keep seeing (and getting in the way of) the same three or four women. One of them finally pulls up right next to me and pats my shoulder. 

“You’re managing really well,” she says. “I’m impressed.” 

And I laugh. But it’s got that hysterical edge to it. Like really, I should be crying, but I can’t because I’m so past that point. It’s all just deliriously funny. Because if it’s not funny, I’m just going to collapse into a puddle on the floor.

I told her thank you, but I’m not sure she really understood how much her words meant to me. Because to me, it wasn’t about managing to get through the store. It was about everything! It was about the neverending storm that always seems to be whirling around me.

This coming week isn’t going to be any less busy. Cyrus has four doctor appointments (February is when everything pops up because it’s his birthday month), I have one, and the cat has another. But hopefully, it’ll just be busy… and not packed with the emotional barrage we’ve gone through in the last week. I’m crossing my fingers anyway.

In the meantime, this baby girl has nine days left before she is going to be evicted! I’m beyond excited to meet her! Hopefully that emotional barrage will only be the good kind!

And in the meantime, let the storm rage on.

The cold never bothered me anyway…?

(Who am I kidding?! I get cold SO easily! But I will carry on!) 

General Update: 

Cyrus’s chronic diarrhea last October and November was apparently not caused by issues with his formula, but by a bacterial gut infection, known as C. difficile. He was diagnosed with this infection the day after Thanksgiving. He took a round of antibiotics for ten days, and his symptoms totally cleared up, only to surge back into being three days later with a vengeance. After the relapse, Cyrus was placed on a nine-week course of antibiotics (which was terrible, because apparently many antibiotics lower your seizure threshold! So, we were seeing 5-6 seizures a day on the worst days), and it was suggested that we clean everything in our apartment while Cyrus was on the antibiotics (and not actively shedding spores) because C. diff spores can survive on surfaces for up to five months!

And you know how that bottle of disinfectant under your sink says it kills 99.9% of bacteria? Apparently, C. Diff is in that 0.1% of bacteria that it doesn’t kill! So, we were directed to use hospital grade bleach! And we decided to steam our carpets for good measure too. So, we had an intense week of purging (to get access to every corner of the floor) and cleaning. The silver lining here though is that having to do this, made our apartment so much more ready for the welcoming of Eliana into our home. In terms of physical space, we are more ready now than we ever were for Cyrus before he was born. 

In addition to cleaning and reorganizing, we’re building in accessibility everywhere that we can. Cyrus graduated from his crib, which he is gifting to his new sister, into an actual full size twin bed. We got a Scandinavian Day Bed that has wood paneling on three sides, and then added a toddler gate onto the fourth. He moved into his own room in late November and has been sleeping better ever since! We also splurged a bit and got the trundle that goes with it, so that if Cyrus is having a bad night, one of us can just sleep in his room. 

Our van also came through finally! And let me tell you, it is life changing! It makes taking Cyrus anywhere for anything SO much easier! And far more pleasant for both him and us with way less lifting and transferring. And as much as he’s not a fan of sitting in his wheelchair, he seemed to hate the car seat more. So, this is awesome!










A week after we got the van, his new wheelchair finally showed up. And again, he hates sitting, but his posture and position looks SO GOOD in it. It’s clear that the old adaptive stroller has been too small for him for months! This is definitely an improvement!

And Cyrus got a haircut a few weeks back. And he looks like a totally different person. One friend said he looked more like a boy and less like a heavenly cherub. Haha! He’s grown increasingly vocal and social both, and this has been nice to see again.

Cyrus appears to have recovered from his status event well. We went up on a med, and I’m finally seeing more side effects than I care for that makes me uncertain if it’s worth it. But it mostly seems to affect him just in the hour after he takes the meds. It just seems to totally knock him out – where he is still awake, but kind of just stares into space for the last hour before bed, so we may not be able to go up on it anymore without affecting his personality. But luckily during the morning and afternoon he perks up and is more engaged with life! He’s having about 2-3 seizures a day since the event. And we’re meeting with his neurologist and a dietician on Monday to talk about trying out the ketogenic diet, which does involve changing his formula again… Wish us luck!