The experience of becoming parents for the first time is one of those monumental life events. You have nine months to plan and to wonder what your new life might look like, but nothing will ever fully prepare you for that moment when you first hold your new baby in your arms. It is all encompassing, both in the love and joy that you feel, and in the challenges that you face as you navigate how to care for this tiny human.
I remember like it was yesterday that fierce love I felt when our son Hudson entered the world at 1.33am on a Saturday morning. The days that followed were the happiest of my husband and my life. I also remember the feelings of overwhelm in those early days: staying up all night with this little baby on my chest, managing cluster feeding and worrying about whether his preference for staying up all night was “normal”. We bought Hudson home from the hospital four days later, feeling sleep deprived but completely in love and ready to begin this new chapter as a family.
Your life changes so much in that first week of newborn life. For parents who receive a medical diagnosis for their child, such as Phenylketonuria (PKU), your world changes again the moment you receive that call from the Children’s Hospital informing you that your child’s newborn screening test has come back positive for a rare genetic condition. For those of us who receive “that call”, the everyday challenges of caring for a newborn are suddenly lost in the face of the new, unique set of challenges involved in learning how to manage a complex medical condition. Your days become a blur with hospital appointments, new feeding routines, weekly blood tests followed by the anxious wait to receive results. There isn’t much time to focus on your own post-partum recovery, to grieve the diagnosis and your expectations of what this phase of your life was ‘meant’ to look like, or even to educate yourself fully on what PKU is (definitely not to learn how to properly pronounce Phenylketonuria – that took me over a year!). You go into survival mode, taking every day as it comes, learning what information you need to manage your child’s diet for the stage they are currently in and leaning on the amazing experts at the Children’s Hospital to help guide you.
For any new parents reading this, who are going through these experiences, I see you and I know it can feel like a lot! Those early days with Hudson were full of so much joy, but at the same time stressful, scary and lonely. The struggle was made worse by having to explain to my family, my friends, the other mums in my mother’s group and even medical professionals (such as our GP and paediatrician) what PKU was and what it meant for Hudson, as most people have never heard of it. I want to acknowledge how hard that is to go through, but also to reassure you that you are not alone.
I will be forever grateful for the other families within the PKU community, especially the relationships I’ve been lucky enough to form with other mums, both in Australia and (due to the wonders of social media) around the world. It is a friendship like no other, an instant connection formed through genuine understanding of our shared parenting journey. I encourage all new parents, once they are ready, to reach out to other PKU families with kids of a similar age. I can guarantee that you will be forging lifelong friendships, not just for your children but, just as importantly, for you.
I’ve reflected a lot on how difficult that newborn / diagnosis phase can be. As your child grows, so does the complexity of managing their diet day to day as you introduce new foods, attempt taking them out to cafes and restaurants, navigate family events, their first Christmas, birthday parties, making them their first birthday cake. We are currently in the stage of looking ahead to our son starting Kindergarten at the start of next year. Every step in the ‘PKU parenting journey’ has its own unique set challenges and a whole suitcase full of emotions that come with them, I could write separate blogs on each of these stages. But all those challenges make our wins so much bigger.
Hudson is a happy, active and intelligent three-year-old. His current interests include frequent trips to the playground so he can run and climb and jump, a strong love for Thomas the Tank Engine, Disney’s Cars and anything vehicle related, and signing along to songs with mum and dad. He loves to count, knows his alphabet and at only three and a half is even competent at reading. As the statement goes, he is thriving. The joy and pride I feel watching him grow and develop into the healthy, happy, amazing little boy he is feels multiplied by a million when I reflect on the journey we’ve had since receiving “that call” when he was just five days old.
There are so many people that have played a part in Hudson having the opportunity to live this healthy, vibrant, normal life – those involved in his early diagnosis, the hospital staff who have guided us through the careful management of his condition, the companies that supply us with supplements and low protein food that allow his body to grow and develop, the PKU community who have wrapped their arms around us, the family and friends who have educated themselves on PKU (especially those who have tried their hand in the kitchen cooking low protein food). But, at the end of the day, the biggest role played in Hudson’s growth has been Mike, my husband, and I. I am so incredibly proud of how far we have come as parents, and to every other PKU or IEM parent reading this, know that I am also incredibly proud of you!
So to all the parents out there reading this: take a moment, take a breath, pour yourself a cup of tea (when you get the chance) and give yourself a pat on the back (or, if you’re like me, an extra special little treat). Whatever stage of this journey you are on, know that what was hard today won’t feel as hard tomorrow, and that seeing your child living out their best childhood makes it all worth it. I think you are all amazing!
