The sacred carelessness of childhood feels lost somehow. The inevitable angst of parenthood is also heightened by the constant need to be vigilant, to be conscious of every mouthful your child consumes. You are plunged, Epi-pen in hand, into a new world where fear reigns. In short, it sucks.
I vividly remember staring at my sleeping 14-month-old daughter on the night of her diagnosis, thinking over and over and over again, “A ‘simple’ nut could kill you. A ‘simple’ nut could take you away from me”. To say I was frightened is an understatement. I was overwhelmed. I was in shock. I couldn’t stop crying.
Four years later, it was bub number two who was diagnosed with a food allergy. This time it was to cow’s milk. “Here we go again,” I lamented, the well-known feeling of fear growing in the pit of my stomach. Only this time, while it was a different allergen, I had a better idea of what to expect.
My eldest daughter’s diagnosis itself was no surprise. When her lips swelled to a size to rival Angelina Jolie’s after only indirect exposure to cashews, I knew it was serious. But the impact on life afterwards was a shock. Everything presented a new challenge – childcare, birthday parties, family celebrations, Christmas, Easter, packaged foods, kindergarten, and, more recently, school. I felt like I was walking a tightrope, trying to balance the risk of exposure to her allergen with her need to be socially active, of teaching her about the dangers in an age-appropriate way, without terrifying the hell out of her.
But the reality is while there is a need to keep calm, there is a valid fear that comes with having a child with a food allergy. To me, there is justified angst over birthday parties. You cannot fully relax at social functions, restaurants and catered foods are just too risky, and there is always a need to keep an Epi-pen handy in case of the unthinkable.
Then there is the pain of seeing the impact on your child when they realise they are not like everybody else. Having your pre-schooler cry and scream, “I don’t want to be allergic anymore!” as you throw yet another lolly-bag in the bin reduces you to tears. Watching them at a party as they stoically pretend not to care about a delicious-looking birthday cake they can’t eat is just heartbreaking.
Sadly, one of the hardest things I have had to deal with has been the reaction of some people to their food allergies. As our paediatric allergist wisely warned us, “There are those who get it, and those who don’t”. I guess the family member who grew angry when I wouldn’t let my eldest daughter eat her almond biscuits was one of the latter.
So too those who have scoffed at the thought that milk, plain old milk, could be any sort of risk. But for every person who doesn’t “get it” and treats you more like a well, er, “nut” (pun intended), than a well-informed advocate for your child, there have been plenty who do understand. And I have finally realised the people who value my children’s safety are the only ones who matter.
Ironically, my eldest daughter, 6, actually outgrew her nut allergy, just as my youngest was diagnosed. I still can’t believe it. Despite the fact she now eats nuts each week as per medical advice, I still have a knot in my stomach. We pray for the day that they will both be allergy-free. In the meantime, the focus is on keeping our youngest daughter safe. At two, she is too young to understand the risks – largely why I left my job rather than put her into childcare where her allergen is prevalent. It has been an emotionally and financially difficult decision, but one that feels right. And that should be the guiding principle for any parent of a child with a food allergy.
There is no doubt that having children with food allergies is hard. But as much as this has been an emotional and harrowing journey, it has also been a time of empowerment. You quickly become an even stronger advocate for your children when their lives depend on it. We have learned to adjust and adapt to create a new “normal” in social situations, including, in my case, always having plenty of safe foods on hand and learning to cook rather than just re-heat food!
While my eldest can now indulge in foods that were once forbidden, my girls have never had a shortage of nut and dairy-free cupcakes in the freezer. We have also learned more about how to source safe commercial foods. I think I am better for my experience but while there is a little silver lining, I would never wish this on anyone.
Mary Papadakis is a mother-of-two, freelance writer and Master of Teaching student.