If you had told me when I was a teenager that the skills I was learning to manage my PKU would help prepare me for motherhood, I would have laughed and not believed you.
Let’s take it back to a camp for PKU teens in 2008.
I’m sitting in a room with 30 other children aged 8 – 17 and we’re learning about how to read labels, correctly scoop out medicine, and measure correct serving sizes of food. The tables are covered with PKU products varying from medical food to different medicines we can take. The room is buzzing with excitement as we all move around from station to station listening to the experts from the hospital and PKU community.
As a 15-year-old, who had been to a camp two years earlier, I was eager to learn more about how to take charge of my own condition. Yes, I know that is probably later than most, but I got there!
The label reading session was particularly valuable for me. I had been reading the “protein” content of labels for years, but I finally learnt how to read the whole label to ensure it was accurate and not misleading.
I finally figured out how to understand what foods we’re often mislabelled as protein free and what foods were sometimes labelled as way higher than they were. This changed the way I ate, the way I thought about food and the way I understood my condition.
Moving out on my own.
When it’s time to finally venture out on your own, whether for university, a job, or the freedom of being of age, the responsibility of PKU becomes truly yours. There is no one there to say and do anything to help you manage your condition.
I knew how to shop for foods that were safe for me, I knew how to read labels and cook, and I knew it required a lot of planning and preparing. The meticulous attention to detail I had learnt, was finally rewarding me with independence.
I still remember the first meal I made. It was mashed potato with sauteed vegetables on top. Not an overly fancy dish but a wonderful staple which can vary in protein needs. It was as simple as cutting up the vegetables and cooking them. My choice of vegetables to sauté were tomato, mushrooms, onion, and zucchini. I usually add some garlic and sweet chilli sauce for a bit of added flavour too.
As the days and weeks continued and my independence grew, all those cooking lessons with PKU chefs, the recipes given to me by camp supervisors and the ever-expanding digital resources on websites like Vitaflo helped me.
Those camps and meeting other teens with PKU helped me develop resilience in new circumstances. It’s the life lessons you learn from people who understand and can support you that are the most valuable in helping you succeed with your condition.
Having children.
If you’ve read my previous blog, which is on the Vitafriends Australia Website, you’ll know my journey through PKU pregnancy was not smooth but so very rewarding.
In the first year of the life of your child, you live in a bit of a blur as you learn how to do the things a parent needs to do in order to help your child thrive.
The most rewarding moments are watching your child meet different milestones. It was with a strong foundational understanding of the food groups, thanks to many education sessions and PKU events that I knew how to introduce foods and the nutritional value of them all.
In this wonderful stage I also went to the Metabolic Dietary Disorders Australia retreat. I was with other ladies who were first time mums, and we all spent an afternoon, along with the rest of the retreat participants learning how to cook different, simple meals from Vitaflo. They provided recipes, support and cooking tips to help us make healthy foods that were tasty. I was keen to investigate the ones that were quick and easy and that is what I focused on.
Fast forward to now.
I am a mum of two, aged 9 and 7, who have coeliac disease, and I did not have the same angst many parents experience when it comes to food and understanding labels. As all parents go through, I did experience the overwhelm of diagnosis but also the relief of knowing it was treatable.
I went back to the basics I had learnt on camp and applied them to this different condition. The attention to detail and the ability to scrutinise every food that I reached for made changing foods and prep in my house smoother. A simple transition that would have been so much harder had I not already been taught to take control over what foods I put in my mouth.
High protein foods for me equal extreme side effects that affect my health and brain function. Glutenous foods for them equals intense stomach pains and days on end of their body fighting to remove the toxin. We have different conditions, but I know that they will be taught to be disciplined in their food choices and supported in a healthy way, to eat what is best for their bodies to grow and learn.
Final thoughts.
It is important for all people with a metabolic condition to know that, the skills we learn as children and teenagers that allows us to take control of our health, actually prepares us for the many different journey’s life takes us on. I know that having learnt how to measure medication, plan and prepare meals and read nutritional information, prepared me for adulthood and motherhood in ways I had not expected.
It’s a lifelong journey with PKU, but with the right support from a young age, we can all move into adulthood ready to take on the challenges that life throws at us.
