When Your Medically Complex Child Gets Sick: Navigating the Worry and Uncertainty

We've been dealing with illness in our home this week. My partner has come down with a case of "man flu"—you know, the type where they’re convinced they’re at death’s door because they sneezed twice and have a slight temperature. But, when you have a medically complex child, or one that spent the early months of their life hooked up to machines to help them breathe, it's a whole different ball game.

As parents to a medically complex child, we live in a constant state of alert. Every cough, every sneeze, every sigh can send us into a spiral of anxiety. This week, it was our turn to be on high alert. Our child started showing signs of what seemed like a regular cold, but in our world, "regular" doesn't exist.

I found myself overanalysing every single symptom. Was that a slight fever or the start of something more sinister? Was that normal tiredness, or was it the kind of lethargy that warrants a trip to the hospital? You see, with a medically complex child, the line between a common cold and a serious health issue is frighteningly thin.

Let's face it, folks, Google is not our friend in these situations. One minute, I’m reading about the common cold, and five minutes later, I’m deep into articles about rare diseases and conditions. It’s like falling into a black hole of medical information where everything leads to worst-case scenarios. Seriously, I should be banned from WebMD.

But here’s the thing: this hyper-vigilance isn’t just paranoia; it’s a survival mechanism. Our kids don’t always exhibit typical symptoms, and what’s a minor inconvenience for one child could be a major health crisis for ours. So, we analyse, we worry, and we often lose sleep over it.

This week, I found myself staring at our child, trying to decode his every move. Is he quieter than usual because his airways are becoming restricted again, or is it just a normal off day? Is that little bit of crankiness just because he didn’t sleep well, or is it a sign of something more serious brewing? I’ve turned into a detective, scrutinising clues that may or may not be there.

Of course, in the back of my mind, I know that some of this overanalysing is part of being a parent, especially one with a complex needs child. It's our job to worry and to be extra cautious. But it can also be exhausting and isolating. Sometimes, it feels like the weight of the world is on our shoulders, and the pressure to get it right every time is immense.

What gets me through is knowing I'm not alone in this. There’s a whole community of us out there, parents who understand the nuances and the fears that come with caring for our special kiddies. We share our stories, our worries, and our victories, no matter how small they may seem to others.

So, as we navigate through yet another week of illness, I remind myself that it's okay to worry, it's okay to overanalyse, and it's okay to seek reassurance from medical professionals whenever we need it. We're doing the best we can in an incredibly challenging situation, and that, my friends, is more than enough.

And as for my partner and his man flu? Well, let's just say he's on the mend and has graciously allowed us to focus our worry where it truly belongs. Cheers to that, and here’s to hoping for a healthier week ahead for all of us!