Let’s be honest
Most days of the week the inside of a Mother’s head is a scary place to be! The inside of an Allergy Mum’s head is no less scary, but it tends to have a constant theme running through it FOOD and keeping safe around it!!!! The society that we live in socialises with food, celebrates with food, gathers around food and that makes life a daily/weekly logistical challenge for a parent of a child with multiple food allergies (like me).
I knew within the first few months of my son’s life that something wasn’t quite right. He was my firstborn and a gorgeous, happy, smiley baby….. except due to lots of little things my gut told me something wasn’t right. Fast forward through the first 6-8 months of his life where I was made to feel like a paranoid mother, where I constantly questioned where his severe eczema was coming from, where my insides were constantly in knots as I watched him turn bright red for no obvious reason. I pushed and I pushed and I pushed and followed my gut and finally got the diagnosis at 8 months of age of a dairy and egg allergy. This was closely followed by a nut, sesame and kiwi allergy (ironically he is a Kiwi!).
Overnight my anxieties changed…. I had a diagnosis, now I could help my son….. but now I had to keep him safe in a world that revolved around food. To say my husband and I had an overwhelming year or two as we started to navigate this allergy world is an understatement! Those first couple of years are a blog in themselves!
Fast forward 8 years and we have a healthy happy fast growing boy. We quickly learnt that we could not keep our son in a bubble and that our job as parents was to give him the tools he would need to feel confident in this food dominate society. Our stories and lessons could fill a book and in fact they will fill several blogs this week as I share key milestones and lessons along the way that will hopefully give you a glimpse into how an allergy mum (parent) views the things that you probably don’t even give a second thought to so please follow along over the week……
“But when your child has anaphylaxis this anxiety takes on a whole new level.”
Let’s start with leaving your child with others
Oh my gosh can you imagine…. every parent is anxious about leaving their precious child in childcare or with a babysitter those first few times. But when your child has anaphylaxis this anxiety takes on a whole new level. I am sure that babysitters, childcare educators and other parents all thought I was paranoid when I would go through the ingredients of food that he was being served that day, or the shelf of the fridge/pantry they could take food from, or the massive lunchbox of food I would take for him when he was left at a friend for just an hr. It wasn’t that I didn’t trust others, it was my way of coping and being a “Mumma Bear” keeping my son safe.
There were many stressful times with more to come I am sure…. the times that I got phone calls to say he had accidently been given or had grabbed the wrong food. Boy, you don’t know how fast you can move until someone tells you your child has been given something that could kill him! Each time we managed the situation and learnt from it. For me to blame people that already felt awful would not have helped, instead I made sure they learnt from it so hopefully there wouldn’t be a next time. But even to this day when my mobile goes and it is school my mind doesn’t go to an injury or illness, my stomach lurches and I think “what has he eaten….?”
One of my most vivid memories is a day I turned up to Kindy to find the HUGEST bag of sesame seeds that I had ever seen on the table and a teacher asking if it was ok that they cooked with these today. My son is highly, highly allergic to sesame. Oh my word, my stress levels went through the roof! I have never wanted anyone to miss out on something because of my son, but without any warning to allow me to adapt the activity I had no option but to say NO to keep my son safe. I hoped in the car and cried that day because allergies are unfair, because my son was also concerned when he saw the sesame and that is unfair and because I was put in an unfair situation.
From this experience I learnt to be more proactive. To not just politely ask, but to request that I am consulted about any food situations or experiences. I explain that this is for my son’s safety and for the benefit of the other children so they never need to miss out on something due to my son’s allergies. I have learnt to be creative and have yet to find a situation/experience that we can’t adapt to make it “James friendly.” Most importantly I learnt to actively stand up for my son and as hard as this was for me (I am a people pleaser), it was vital for me to role model what he would need to learn to do for himself for a lifetime. An important and empowering lesson.