I’d like to say my spidey senses were tingling when we made no plans for these Easter holidays, but I’d be lying. Truthfully I just wanted to chill a bit ( bahahaha what’s that again?) and not have to rush about every day. I’m not sure if you’ve noticed but medically complex kids like to pick the holidays to be ill, and Nate has certainly joined in with this trend. Most of his symptoms are fairly innocuous: higher heart rate, lower sats, coughing, slightly raised temperature at times, and now not tolerating even his jej feeds. He isn’t smiling or using his voice. He hasn’t been “right” for over a week. It could be something or nothing and we are hesitant to go to hospital when we can manage all of these symptoms at home. Should he get worse or not show signs of improvement then it would be an automatic trip over.
Nate is asleep as I write this after being a bit dodgy this morning, and how he presents when he wakes will determine if we make the trip to hospital or not. His heart rate has come down and his oxygen saturations are now up so we will let him sleep as long as he needs. None of this is new but it can be impossible to predict in which direction his health will go.
As families, we tend to sit in two initially distinct camps. Over time we move between camps, and there is much camp crossover and camp ”mergement”.
The first involves sacking everything off to focus on your sick child. You cancel plans with friends and family, you stay home and you watch. I think we all start off doing this, but it’s not sustainable. Over time you learn to determine on their own unique ”illness scale” what you can get away with as a family and act accordingly. Over time this stage will be returned to numerous times and the trick is to know when it is necessary; we certainly don’t want to be in this camp more than we need to. That’s not to say I don’t know families who permanently live here due to the severity of their child’s needs, their life expectancy, or families who feel this is what works for them.
The second camp involves much risk management ( another “skill” to add to the parent/ carer list?). Periods of risk-taking involve trying to live as normally as you can.
It could mean battling to stay out of hospital over Christmas, managing their health needs at home for the good of the whole family, and to make memories.
“Abandoning” your poorly youngest child to the care of nurses and play workers in hospital in order to catch your eldest in their first nativity.
It could mean braving trips away together as a family, going on those holidays so many people take for granted even though you know you will rely on emergency services and hospitals who don’t know them well to do their best if needed.
Having a day out even though your ill child is asleep and you aren’t quite sure what’s up, but you’ve already worked out the quickest way to the nearest hospital.
Watching your eldest in a netball tournament while your youngest is full of snot and unhappy knowing people might wonder at your logic in bringing him along when the alternative would be you and her missing out.
Watching your eldest in a football final armed with suction, oxygen and ventilator “just in case” because selfishly you weren’t going to miss it unless you really really had to. Because these things matter and your nearly nine-year risk management course said you could get away with it. As your daughter’s biggest supporter (even looking like shite) your son should get to see her play like a fucking star.
The truth is that for our children quality of life is what matters. Family life matters. And inside my dark and twisted soul I can’t help but think if that family holiday, that trip out together, that goal, is the last thing we see or do together as a family, you know what, that’s OK ( well not OK, but you know what I mean).
*Tries to look for and book a holiday... and bottles it*
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