by JO LEAPER
I’m lucky to have two beautiful boys, Caleb* (4) and Fredrick* (2).
I’m also not so lucky. Fredrick has been ill just about every day of his life, with the exception of three glorious months between four and sixteen weeks old.
I try to instil the same values in each of my boys, regardless of how ill Fredrick is. I hope, every day, that it doesn’t change how I view them or how they view the world.
Herein lies my dilemma: how does a parent ensure that their unwell child is seen by everyone else around him, in the same way as the healthy child? After all, I can’t hide his illnesses and how sick he is.
So what’s my problem? How do you handle the fact that your child is constantly sick? And how do I ensure that Caleb gets just as much attention and truly quality time with his family?
We’re fortunate that Fredrick’s is not a life threatening illness. I’ve seen friends lose children through that, and I wouldn’t wish it on my worst enemy. How do you explain to child care that the four medications he’s on all are necessary, when all they want to do is send him home? Or face that constant question of what’s actually wrong with him?
Don’t get me wrong, we’ve been at the life threatening stage… twice. And both times, the illnesses weren’t so common that people around us understood the ramifications. Hell, even I needed to do my research – I’m not medically trained at all, I’ve just benefited from watching a lot of Grey’s Anatomy. It’s not a comforting thought that most of Fredrick’s illnesses have used as cases on Grey’s Anatomy and House.
Fredrick is not considered critically ill, and rightfully so. He doesn’t have cancer, he doesn’t have every day difficulties that MS or Cerebral Palsy brings. I’m thankful every day that he doesn’t. But he is ill…. every day. There’s a multitude of medications, every day. On a good day, we have one to two a day.
On a bad day, like we’ve had for the past couple of weeks, there’s a running joke in the house about the “Heads, Shoulders, Knees and Toes” song – Fredrick’s medications today have gone into “eyes and ears and mouth and nose,” sometimes with two into the one orifice.
So, what does he have? Well, that’s a very good question – it’s like a shopping list. His GPs say he’s ‘atopic’ or hypersensitive. We’re most definitely frequent flyers at the GP and I swear, we’re responsible for the profitability of our local chemist!
Fredrick’s paediatrician adds ‘excessive secretor’ to the list, in truth, he tends to pick up whatever’s floating around. All was good at the beginning, despite Fredrick being a little premature.
First up, at 12 days old, he was diagnosed with a septicaemia (blood) infection, Group B Strep (GBS). Extremely rare to get at that age, even rarer when my waters didn’t break – that was nine days in hospital, including his first Christmas. All was good for a while, until RSV bronchiolitis came to visit. The first time, he was back in hospital for five days. He had another seven lots of RSV in the next six months.
Fortunately no more hospital stays, but a few visits, a lot of nights with minimal sleep and a lot of worry. It wasn’t until then that I truly understood how sleep deprivation could be used as a torture technique. Oh, and then glue ear, exacerbated by the medication given for the GBS. That has led to two operations at nine and twenty-one months – and he’s about to have a third.
I’ll spare you the details of the next eighteen months: in short, everything Fredrick gets, he gets in the extreme. Good news though? Yep, his paediatrician has joked that if he wasn’t so happy we’d have put him on Ebay ages ago. He’s a cheery kid, even when he’s ill – I told you we’re lucky.
We take things day by day. My husband and I balance as best we can, it’s hard (especially on our relationship) but we do what we can. Like most families, the kids come first, then the usual work, mortgage, bills etc. But you know what? Most other people have something going on – this is our thing. And we’ll get through it. Fredrick will get stronger every day. He is getting stronger every day – we don’t know if he’ll ever grow out of it, but his body should be able to cope better as he gets stronger.
What would have had us in hospital previously, we’re getting through with the GP. He’s now two years hospital free. And his big brother now has a playmate who is just starting to give him a run for his money. My heart bursts when I see them together, especially knowing what the four of us have been through.
So why am I telling you all this? I guess, in part, it’s a little bit of therapy. It’s also, I think, that even twelve months ago, writing about any of this would have left me in a weepy mess on the floor. It was only a few months ago, when I was writing a list of Fredrick’s medical history and medications for childcare, that I realised that I can cope better with it all now.
I’m now able to distance myself from Fredrick’s condition, to hold back the emotion and the fear of more hospital admissions. I’m now able to, finally, treat my two year old as a two year old, not as a child with illnesses – and now that I can, hopefully others can too.
Jo Leaper is a working mum of two beautiful boys. She loves to catch up with friends, read and, of course, eat chocolate – but truthfully finds it hard to find the time to do all that!