Not mutually exclusive
As humans, I find that we tend to create false dichotomies.
I want to love my job. But I want to get paid a lot.
I want to marry for love. But I want to be financially free and secure.
He’s given me immense joy. But he’s a source of deep sadness.
Let’s just remove the but and put the word AND.
I want to love my job and I want to get paid a lot.
I want to marry for love and I want to be financially free and secure.
He’s given me immense joy and he’s a source of deep sadness.
Somewhere along the lines, we were told if something makes us happy, it couldn’t, in the same breath, make us sad. If it’s good, it can’t be bad. And vice versa. But experience (life) has taught me otherwise.
Today is my nephew, Tristan’s, 2nd birthday.
Here he is, during his 2nd birthday/Christmas photoshoot:
I know what you’re thinking… there’s so much sunshine coming out of that kid, it’ll give you skin cancer.
Put your sunscreen on, here’s T again, hanging by the fireplace.
I took 68 photos today, and all of them, adorable. But I didn’t take any of T running, or jumping or climbing.
And that’s because he can’t, yet.
Now, if you’re not up to date with child development charts, most children walk around the age of 1, 1.5. T isn’t most children.
Not just because of his sunshine-y self, but because he has a 1/20000ish neurogenetic disorder called Angelman’s Syndrome.
There’s a lot of googling you can do to tell you what Angelman’s Syndrome is (I know cause I’ve read every link on the interwebs), but the TL;DR version is:
- He’ll have big developmental delays – motor skills will eventually come (the walking, running, jumping I mentioned) but cognitively he’ll probably never write a paragraph like the one I’m writing now. His speech will (if he has any) be super limited.
- He’ll have a standard life expectancy, though he probably won’t be independent.
- Angelman kids tend to have a happy demeanour and terrible sleeping, T (thankfully) only has the former so far.
- It’s a completely random, non-hereditary disorder, that falls outside of any regular testing.
Yeah, it’s a lot.
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Deep breath. Tissues. Whatever you need, grab ‘em.
When we found out back in February, devastated would’ve been a bit of an understatement.
The deepest, darkest pit in your stomach. An unrelenting feeling of helplessness. Many tears.
There’s a weird type of death that happens in your mind with news like this. It’s obviously not a physical death because:
There he was, as he was, all the days before we got the news.
It’s the death of an idea – the ideas, possibilities, expectations of what he could be, they got narrowed down.
We had to come to terms with that death.
Burying the versions of him that we playfully imagined – doctor, singer, professional hockey player (whether he would’ve, is something else all together – I’m sure all of us have fallen on many parental expectations).
And following that death is grief. It’s a process, and I’m not sure it ever quite ends, though it does change over time.
At this point, you might be saying to yourself, shoot – you folks had the worst year, it must’ve been just filled with tears and sadness.
And there was some of that.
But then there was all the joy, laughter and happiness that happened – sometimes in the exact same moment, but most of the time, it was just that genuine, plain ol’ happy that accompanies goofy smiles.
I mean, how could you not smile, around a face like this?
Side story (to corroborate the photo above)
I’m T’s favourite aunt. Some would argue, favourite person. The way he lights up, with such unfiltered joy, when I walk into the room, is a feeling of love that I hope everyone gets to experience in their life.
The punch line of this whole thing is, I’ve never been happier then when I’ve been with T and I’ve never been more devastated by anything in my life.
Both feelings are equally true, not mutually exclusive, and one doesn’t devalue the other.
The older I get, the fewer black/white, binary things there are. Things (and people for that matter) are not just bad or good, happy or sad – it’s often both, and sometimes at the same time.
P.S. If you’re reading this, you’re a friend or family member of sorts. And if you’ve read this far, and you didn’t know of T’s condition already, I probably just volun-told you into a bunch of feelings. Please feel free to send me your tissue bill.
As someone who grew up with a dead mom, I learned that there is no good time to bring up a dead parent, or in this case, a neurogenetic diagnosis for the cutest (bias) 2 year old on the planet. So forgive me for not injecting this into any of our conversations earlier, it’s not because I didn’t want you to know, it’s genuinely because I just didn’t want to ruin whatever fun time we were having, with tears.
P.P.S. I’m super good to talk about all things T and Angelman related if you have questions, comments or what not. Really, I’d love the dialogue.
Okay one last one, this time with his mom and what T really thought of our photo session:
