Monday, August 28, 2017

The Everyday Roller Coaster


The ups and downs of our journey is such a regular thing that sometimes I start to wonder if I've become desensitized to it. Because there have been times when others in my life have reacted so strongly to an event or an anecdote of our lives I've shared and I find myself taken aback. Why are you crying right now, I want to ask. This is everyday for us.

Other days, everyone misunderstands the struggle and I feel like the only person on the planet that treasures Cyrus for who he is - that sees him as a gift, and not a tragedy. This tiny child has taught me so much. He has shown me what I'm capable of when the world has fallen apart and he has shown me how much there truly is to be grateful for. I also just really like him! He is so sweet! 

Because every milestone is hard fought for, the tiniest developments are enough to send me over the moon with pride and joy. Whether he's just learning to use his teeth to actually chew something, or he's holding onto a hula hoop so that he can roll around the room, it always seems like a significant moment. These moments are sometimes few and far between, but they have been numerous. And they have somehow maintained their emotional punch. 

Cyrus being pulled around the room on a scooter board, but only if he continued to hold on. He lasted 90 seconds!
Learning to chew. He's improved so much in the last three weeks we've been doing this!

On occasion, the tragedy that many others see constantly, hits me all over again like an unexpected tsunami. Maybe it strikes when he's recovering from a particularly intense seizure, or when he's eating exceptionally poorly. The anger will flare up at the injustice of it all, and it's followed quickly by the devastation that this child will one day leave me.

I often wonder how it is possible that I haven't come to terms with this yet. And the more time has passed the more adept it is at creeping up on me, and therefore it strikes me that much harder as I'm completely unprepared for the onslaught. My husband recently said that he has come to terms with the fact that he will never come to terms with this. And that nugget of wisdom seems like an epiphany that perhaps even expecting myself to be "used to" it or have just "accepted it" by now is completely unrealistic. Instead, I perhaps need to embrace what I feel. 


Probably the longest part of the ride is just a heightened level of anxiety while watching over the course of weeks as seizure activity just ever so gradually ticks up, and then becomes completely routine, to the point where I can predict when it will happen within ten minutes - not because Cyrus has some specific trigger, but because it happens at the same time.... every single day

So then, I have to become creative. And I mess with his medicine schedule - move everything up by an hour to hopefully buffer him thirty minutes before the seizure is expected to hit. But then, the predicted seizure train just moves from the afternoon to the early morning. But what if I spread out all the different prescriptions? Clearly, he needs some late at night to last until morning, but he needs some boosters throughout the afternoon too. Of course, this means we're now giving him medicine five different times a day, but when his seizures mostly disappear, it's hard to argue with the inconvenience of such a schedule.


Taste the rainbow of medicine!
Except then, they strike with a vengeance exactly one week later. Like they were just hiding until we had become complacent. And the hardest part of the seizure is not the seizure itself, but rather the aftermath. Where his chorea explodes in frequency and intensity stealing what little coordination and autonomy he has, or how his smiles disappear and the world seems perpetually beyond overstimulating, and therefore upsetting and stressful for the little guy.


But even through all that I'm still sometimes taken aback by how sweet this child is. For example, he despises taking his medicine or getting his teeth brushed. He will let his displeasure be known in crumpled faces and sometimes even irritated moans or with an attempt to roll away. And yet, when you approach him with a toothbrush or an oral syringe he opens his mouth like he's trying to help you. He knows what you're going to do, he knows he doesn't like it, and somehow, he cooperates anyway.

When I come home from work, he's often falling into a nap, but he'll give me the cutest little sleepy smile before slumber will snatch him completely. And when taking him to class he gets so excited to see his teacher or his classmates. 

Sometimes though, I'm too exhausted to have feelings about anything. My first week back at work, Cyrus decided to use the pain of birthing a molar or two as an excuse to never sleep! I think I may have gotten 25 hours of sleep during the whole five day work week, and I'm confident that Cyrus got even less. (Well, maybe he cheated with a few naps in the middle of the day). But again, the never ending fussiness is not the biggest problem. The lack of sleep compounds and amplifies every one of his health issues. He has more seizures, the uncontrolled movements are exacerbated to the point where he can't eat well or fall asleep (he will just hit himself in the face and jerk awake again), which just adds to the awful cycle. And goodness knows, I don't have the emotional or mental resilience to handle any of it on 25 hours of sleep. 

Cyrus's go to strategy to cope with teething pain.  
Cheating like pro by taking a nap standing up! 
But this past week was none of those things. This week, Cyrus had a really good week. The teething seems to have abated at least to some extent (we have two out of four pointy bits of the second to last molar actually poking through!), and we've added a fourth anti-seizure med to the mix. It does make him a little sleepy and by late afternoon he just crashes for a nap. But we've seen only the slightest of seizures lasting only for seconds. He coordination is up, and he's been taking advantage! He's rolling around all over the place - I'm almost convinced he's learning how to turn corners to navigate around corers and under tables. And more importantly than all of that, he's in love with life! He's just in the best of moods. For five days in a row now, he's ended every evening with giggles and smiles.

Best week ever!

You just have to treasure the highs. Because the roller coaster will eventually plummet back down to the ground - it's just the nature of the ride we're on. And there is no greater high in my world than watching this child's joyous laughter. 


Navigating through our beautiful, if sometimes treacherous, path.
And smiling through the journey!