What It's Like To Be A Mum To A Child Who Has Life-Threatening Food Allergies
Updated: Sep 24, 2020
Most people leave the house and mentally check “keys, purse, phone” before they walk out the front door, my version is more like “antihistamine, adrenaline, inhaler”.
My eldest daughter is four years old. Her allergies were diagnosed early, at 8 months. Like any first-time mum, weaning was an exciting milestone, but a teaspoon of yoghurt later, Eva went limp, floppy and fell unconscious. Rushed to hospital in an ambulance, she was diagnosed with life-threatening allergies to dairy, eggs, nuts, sesame, legumes (peanuts, chickpeas, lentils, peas and beans), shellfish, aubergine, butternut squash, mushrooms, courgette, and peppers. She’s since had numerous allergic reactions through food, skin contact, as well as an airborne nut allergy reactions, which means she has reactions when there are nuts nearby, or even if someone has been eating them.
These allergies are caused by the body misinterpreting food as a foreign substance, causing an immune response triggering a release of histamine. This immune reaction can affect the skin, gut, breathing, or the whole body’s circulation system causing unconsciousness. Severe reactions like this are called anaphylaxis and in extreme cases can lead to death.
The initial allergic reaction and subsequent diagnosis were extremely traumatic. I was in shock and confused as to why she had such severe food allergies. Was it something I had done to cause it? But while the initial trauma of the incident faded in time, the danger to Eva has not. People would say she’ll grow out of by the time she reaches school, but each year her allergy tests have found more foods she is allergic to, along with increased severity, fading hopes this will end any time soon.
It’s not about wondering what the future looks like, but how we are managing today. The level of fear you feel when your child is in imminent, life-threatening danger, awakens a primal urge to protect. Being so powerless to help your child is horrible, I just wanted to fix it, take the pain away, bear the hardship myself. But I can’t.
When most mums are invited to a birthday party or picnic, the first things that run through their minds might be the new Jamie Oliver recipe they’ll bring, or what present to buy the birthday boy, but for me, it’s a well-trodden thought path of mental checklists and questions about whether attending is even possible, long before I’ve even checked the diary to see if we can make it. How well can I control the environment? Do I know the host and other mum’s well enough to explain and ask for their empathy and inclusion for Eva in their party plans?
If you have her over to play, please understand that I want to trust you with her care and not question your judgement, but one knife used to spread butter then used again unthinkingly, one plate with a leftover biscuit, a cupboard absent-mindedly left open, or treats from a forgotten party bag hidden under your child’s bed, could all be fatal. Do you know how to use an Epi-pen if something did happen? Are you first aid trained? Can I really trust you to be as vigilant and careful as I am day in, day out?
How can I make any environment outside my own home 100% safe for Eva? Well, the fact is I can’t, and she is growing up with a desperately unfair burden of life-threatening risk, one that I can only try my best to mitigate.
I don’t want to be the uptight one, the difficult one, that’s not me. I don’t want to be the one half listening to you, preoccupiedly nodding along while I crane my neck to keep an eye on my daughter from across the room. I never imagined motherhood as scouring the back of food packets for a potentially life-threatening ingredient between the almost illegible, tiny words.
I can’t just grab a take-away or an M&S ready-meal when I’m tired or busy, we can’t just spontaneously go to the zoo without packed lunches, there is no ‘just pick up something when we’re out’. The constant and relentless meal planning and preparation is like a treadmill of expensive-alternatives, made-from-scratch recipes and a whole lot of Tupperware.
It can be an extremely isolating position to be in, with even your closest friends not quite understanding (try as they might) how meticulous life must now be. Being seen as picky, demanding, overbearing and rude is an unfortunate reality by those not in your inner circle.
On a good day, you feel like a normal parent, on a bad day you are anxious, fearful, and consistently berating yourself. The one consistent feeling is the exhaustion; there are no days off, there can be no silly mistake. The constant vigilance and over preparedness necessary to shield my daughter from this invisible but ever-present threat can be overwhelming. However, over time, it is a feeling that I have learnt to live with and manage, both for own sanity and to create a positive family environment for Eva, my husband and my other (non-allergic) child.
I have found amazing support from the only other people that truly understand- other allergy mums. Being a part of that community was a vital step in reclaiming my life from being defined by my daughter’s condition. Together, awareness can be raised, because that is really all that is asked for. Awareness that this is serious, it should be supported and not judged, it can be managed, and it’s not Eva’s (or my) fault.
In time, Eva will have to learn about her allergies and how to manage them herself, and like we teach our children to not run in the road or get in a stranger’s car, I will guide, teach and help her through it. Until then, I can only protect her, as at four years old, she’s yet to develop full comprehension of her allergies and their implications.
The risk we deal with every day is not simple to calculate, there are just too many moving parts. It is a constant, ever-moving equation of threats, mitigation, and the burning desire for Eva to have the most normal life possible. As a parent, that’s all I could want for her.