To risk it for a biscuit – from diagnosis to living independently overseas

A story by Jessica Sinclair about managing food allergy from diagnosis to her daughter now living independently overseas 

“Ding…. Dong….”

The doorbell chimed loudly, jolting me upright as I sat slouched on the couch consulting my hectic calendar for the week ahead.

The dogs scampered towards the door barking frantically at my startled reaction.

“Door’s open, come on in Lucy”, I shouted over the fracas, noticing the blurred outline of a familiar face through the semi-opaque window.

“Sarah….”, I yelled upstairs, “Lucy’s here!”

With the tone of my voice, the dogs enthusiastically lingered at the door, wagging their tails fervently at the sign of a welcome visitor.

“Come on Sarah, I’m starving”, implored Lucy, as Sarah fumbled with her oversized purse on her way down the stairs in an awkward pair of sandals.

“Me too, can’t wait to try those nachos everyone’s been talking about!”, exclaimed Sarah with a beaming smile.

Touching my arm ever so discreetly, her voice waivered slightly, “Hey Mum, we’re going to that new Mexican place up the road……”.

She was clenching her fists nervously as she had always done since she was a young girl, a tell-tale sign of her apprehension.

“Have a lovely time darling…. have you got everything?”, I looked at her straight in the eyes, then at her bulging bag.

“Yes, yes, stop fussing, I’ll call you if I need anything”, she answered quietly, clearly trying to hide her embarrassment.

Closing the door, she called out, “Bye Mum, see you later”.

“OK, sweetie pie, enjoy yourself”, I replied turning away abruptly to conceal my own anxiety.

One hour passed; then came the message I had been dreading.

“Mum… I don’t feel well…. Please come quickly”

Holding the pen like a dagger, I pressed it, probably too hard, into Sarah’s upper thigh, the fleshy bit, just like the doctor said. Crap. Now there was going to be a bruise. Count to ten, don’t panic, keep composed, I reminded myself.

“Be brave, darling, the ambulance is on its way”, I murmured gently stroking her hair, desperately stifling the urge to cry.

“I’m sorry Mum…. I just wanted to have what Lucy was having…. I checked the menu over and over, there was no symbol; I feel so bad…. I’ve ruined everything”, she trailed off battling for breath. Her face was looking swollen; her bare legs and arms were erupting with raised hives before my eyes.

“Try to relax”, I coaxed, grasping her trembling hand. “You’ve done all the right things; you’ve got to stay calm remember. You haven’t ruined anything darling, it’s not your fault”.

An anaphylactic reaction is life threatening; it can happen by accident, without warning and despite the best precautions. The anticipation of the reaction is draining; an agonising interval spent waiting for signs of symptoms to develop, with the ominous fear of what could be coming next.

I felt sick to the pit of my stomach. This was not the first time we’d had to call an ambulance and it was obvious she was deteriorating quickly. God, I wished they would hurry up.

Thirteen years earlier I had held her in my arms as we celebrated.

“It’s a girl!”

Astonishing words as we had finally bucked the trend of male genes dominating our family genetic pool for three generations before. We named her Sarah after her adoring grandmother; born against the odds on my very own birthday, the most treasured birthday present I could have ever wished for. A beautiful baby girl to complete my perfect family, younger sister to my first-born son, growing quickly into a vivacious toddler with a huge smile and a captivating personality.

At the age of five, Sarah had received her first adrenaline injection, having consumed an unlabelled slice of cake containing peanut flour. Sarah had become a statistic; one of the increasing numbers of children with anaphylaxis to nuts and peanuts. Her lips had turned purple and swollen as her body dappled in hives, preceding the vomiting and gasping for air. It had been a heart wrenching and terrifying moment watching her symptoms worsen. From that moment we realised that Sarah would never have the same choices that most others took for granted.

My maternal instinct had been to protect her at all costs, devoting myself to her safety above all else. It had required dedication, patience and compassion from us all, as Sarah became increasingly tormented in a world full of nuts. I had struggled with the unfathomable diagnosis. I couldn’t help but wonder what I could have done differently, if I could have somehow prevented it?

While Sarah was a young girl, I felt relatively in control; I could monitor what she ate, call ahead and check ingredients. Family dinners were carefully planned. As she went to school, Sarah became increasingly embarrassed and ashamed of her allergy. Most of the children never really understood, despite the teachers’ best efforts. She felt labelled as the weird kid who stopped them from being allowed to eat their favourite peanut butter sandwiches. It was heart breaking to learn that she hid in the toilets at lunchtime to avoid the child that had snuck in a packet of pistachios.

Reaching her teens, the pressure of parties, drinking and meeting boys brought a new multitude of dangers. The risks were high, and I was losing control. Sarah yearned for a friend with allergies, someone that would understand why she had to say, ‘no thanks’ to the kind offer of a cake or biscuit, even though someone else said, ‘it should be fine’. She worried that she was letting other people down, becoming distressed about hurting their feelings, at the expense of protecting her own life.

Not surprisingly, she created barriers to friendships through her anxiety and fear to trust; unintentionally feeling excluded and alone. The constant risk of exposure to nuts was relentless and often humiliating, resulting in many stressful and exhausting episodes in Emergency wards.

Learning to live with this perpetual threat, remarkably Sarah grew into a capable and independent young lady; determined to relish life and food within her known boundaries; courageously hiding her mistrust and inner anxieties. She learnt to cope in the face of adversity and to put herself first; to follow her strong instincts in order to survive, sometimes at the expense of other people’s feelings.

My phone bleeped, ‘new message’:

“Hey Mum, how’s it going? You awake?”

Sarah was in her early twenties now, living in Ireland, over 15,000km away. She went travelling when she was eighteen and never come home. A little part of me had felt ripped out, but I knew it was her way of proving she could survive on her own.

I opened the message eager to learn of her news:

“Guess what? I’ve made some new friends at work, one of them’s Australian! We’re going out for dinner tonight….. a new Italian place …. I’ve checked the menu on their website and gave them a call, like always…. still a bit worried though, one of the pizza’s got nuts on it; not sure they understood me tbh, they didn’t speak much English… Oh well, guess we’ll see I suppose haha xx”

I fidgeted uncomfortably in my chair, unconsciously picking at my fingernails as I let out a deep breath.

Near to bursting with silent motherly angst, I replied with deliberation:

“That’s lovely darling, I’m glad you’re making new friends. Message me later, let me know how it is! If it’s any good, maybe you can take me there next time I’m over :)”

“Will do Mum, love you, wish me luck xx”, came back the almost instant response.

‘Luck’…. and an insuperable mouthful of courage, I reflected profoundly as I wished more than anything to wrap my precious daughter once again in my protective arms.

My heart ached as I longed to liberate my precious daughter of this wretched burden; to give her freedom to enjoy life without the daily anxiety she experienced around food and to have the same choices as everyone else. For others to realise what impact their small decisions could make to a person with a life-threatening affliction, to take the time to care and to understand. For Sarah to never feel ostracised or alone through life’s complex journey; to never feel pressured to “risk it for a biscuit”.

Editor’s note: It can be helpful when eating out to use A&AA Chef Cards as an additional precaution. You might also like to mention to your favourite cafe or restaurant there there is free food allergen e-training for food service businesses that they can ask their staff to do.

Please also note that the EpiPen^® hold time is now 3 seconds.