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.
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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.
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| 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.
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| Cyrus's go to strategy to cope with teething pain. |
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| 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.
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.
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| Navigating through our beautiful, if sometimes treacherous, path. |
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| And smiling through the journey! |
