My son is sick. His birthday is in exactly 2 weeks. He’ll be 3 years old. (And no, I’m not okay with it.)
He is the unfortunate recipient of a horrible genetic disorder, along with his older brother, gifted by none other than myself.
The way genetic disorders work in families, each member can experience it differently, or more (or less) severely than the others.
My Phoenix seems to have the worst of it. Or at least….his symptoms differ from my older sons. And they appear to be more…well, less compatible with life.
Last week, I went into his room and he was unresponsive for at least a good 6 minutes. We’re pretty sure he had a seizure. But it’s never happened before, so I honestly couldn’t put it in my mind as yet another thing that could be.
Today, he woke up sick.
When either one of my boys get sick, they are usually the only one. For some reason, it stays with them and doesn’t spread. It makes me think it’s more of a “them” problem and less of a “sick” problem.
But whenever he gets “sick”….he gets sick.
Like, “okay, you have a cold, here’s a 106 fever to go with it…hope you don’t die!!!”
It sounds dramatic, but that’s really how it is. It’s shit, it’s scary, and I hate it.
Today, he had a cold. He’s the only one. It’s “a cold”.
But is it? Or is it secretly pneumonia, or is it really just his heart and lungs giving out, or is it something different altogether? He has a 104 fever, but then he doesn’t. One minute, he looks like actual death….but then he convinces me…or I convince myself…that he’s okay. As in, not actually dying.
When either of them struggle, when either of them aren’t okay…the fear is there. They’re fragile. They are literally….just…fucking fragile. The irrational fear is that they are going to die, any time they get sick.
But…that’s…honestly, pretty close to our reality.
So…is it an irrational fear?
Or is it just an unfortunate reality?
You tell me. It feels the same either way.



I really hope he’ll be okay.