Shout out to my parents...

I thought I may as well start from the beginning (or as far as my memory will stretch) and share some times that really sum up what it was like for me as a young kid growing up with PKU. Also I’ve never really sat and thought about what it was like for my parents at this time, so this is sort of an appreciation post too.

First of all, I want to put into perspective exactly what it was like for my parents at the early stages. So the news had just been broken to them that their kid has this thing called PKU that nobody really knows about. But they’re told that it’s pretty important that it’s treated correctly because if not, it could lead to brain damage... A great way to terrify any new parent.

Now, when I think about what it must have been like for my parents to be told this, it doesn’t surprise me at all why they became so strict and cautious with me around food. I mean it got to the point where they wouldn’t let me eat with the same knife even if it had only touched meat. This sounds absolutely crazy to us now (probably because it is) and we can laugh about it, but at this time in my life they knew very little of the condition and probably misunderstood certain aspects of it.

To help guide PKU patients and their families through the condition the National Society for Phenylketonuria created a booklet containing lists of all of the foods and drinks that a PKU patient could have. It told you the name/ brand of the product, which supermarkets they were available in and how many grams of protein were in them. I honestly think this is such a good idea and I can appreciate it a lot more now. But as a young a child I think I secretly grew to hate the thing. My parents were so strict in following this book – the rule was simple, if it wasn’t in the book then I couldn’t have it. No exceptions. I remember being at friends’ birthday parties (we’re probably talking around aged four/five) and having to eat different food to all of my friends. I couldn’t even have the birthday cake. This might sound like such a petty thing to anyone who doesn’t have PKU, but as a young kid this was a really difficult concept to grasp. Why couldn’t I be the same as everyone else? Side note, if there are any of my old school buddies reading this right now and you’re remembering these times and the kid in the corner eating weird food…well yeah that was me.

I was reminiscing about these times with my parents a few weeks ago and they reminded me of something that I think is worthy of sharing here…

Every now and then, my parents liked to take me to the seaside on an evening for the traditional fish and chips (or in my case, just chips). They would take the weighing scales into the pub or whatever (those scales literally followed me everywhere for a very long time) and would ask for a spare plate to weigh my food onto. Being around aged four, I was on an allowance of four grams of protein a day – I probably had a couple saved for this meal. Something important to add here is that I always had to have my full allowance of protein every day, no more and no less. Anyway, we’d sit down to the meal, I’d get halfway through and I’d just had enough of my food. But of course that was not an option, I had to finish my meal some way or other. I’ll admit now the food sometimes even had to be named to get me to eat it. We would sit there for hours until I’d finished, whilst everybody else in the place was probably harshly judging my parents for forcing their kid to eat junk food. It probably didn’t look great to a stranger, but the fact was they were doing what they had to do. I’ve realised that at times like these, my condition was probably tougher on my parents than it was on me. They had to work hard to get me to stick to a diet that I didn’t really want most of the time. So here's a shout out to my parents for doing alright at raising a kid with PKU. I might not have thought this at those times you refused me birthday cake, but honestly you guys did a great job.