How being human amongst lots of other humans is risky to an allergy sufferer
“Billie, would you like one?” Across the picnic table, I watch as someone offers my daughter a mini sausage roll. Pastries usually have an egg wash, or people sometimes bind the filling with egg so I am about to shout out a mum demanded “No!”
“I am allergic to eggs and nuts,” she tells them as her little sister Matilda grabs one.
Phew. “Good girl”, I think.
The next thought is “I have to make sure when Matilda finishes that food I wash her hands and her mouth out”.
I recall the time I was distracted by life and forgot to. Matilda ending up drinking from Billie’s water bottle and triggered an allergic reaction in her sister.
During the aftermath of that, Billie managed to knock her nose on the spew bowl she was using at the time.
The guilt I experienced as I witnessed the fear in my daughter’s eyes as she spewed, holding her nose and trying to cry is near impossible to forget. Tears are running down my eyes as I write. A lump forming in my throat as my mind takes me back to that moment in the past.
All from a simple mistake on my part and not paying attention.
Reacting to life’s pulls and tugs instead of being fully present.
Not taking the steps I needed to provide my daughter with a safe environment on repeat.
- Taking a phone call and forgetting to wash Matilda’s hands and mouth after she had something with egg in it while we were out
- Not preventing Matilda from taking a sip from Billie’s water bottle as others talked to me during a school pick up
- Forgetting Matilda drank from Billie’s water bottle
- Not washing the bottle out when we got home
- Watching as Billie took a drink from her water bottle with traces of egg on it, and only realising then what I had done —
- Attempting to accept the isness of what was to come from my distractions.
I may be being a melodramatic mother, narcissistic even some may say. Either way, it is a memory that still returns years later to remind me to pay attention.
To add a bit of context, Billie is anaphylactic to nuts and has an allergy to eggs.
Nut exposure means a jab of adrenaline, an ambulance ride and 6 hours of observation in the hospital. Reactions can worsen/return within a 48 period after exposure so throw in a couple of sleepless nights for me and her dad as we. take turns in monitoring her. (See biphasic-anaphylaxis for more information.)
Eggs when directly ingested will make Billie vomit bile for a good 12 hours. When she indirectly ingests egg (say from a kiss from someone who has eaten eggs that day, or as a 5-year-old still often does, unconsciously puts her hands in her mouth after playing with something that has a smear of birthday cake on it) she will vomit bile the following day for most of the day.
In both egg instances, a rash will hang around on her body for a couple of weeks and then usually she will have a few days of high temperatures and a sinus type infection.
Taking this into account, after years of learning, mis-takes with the side of mummy guilt, I try my very best to minimise her exposure to eggs and nuts.
Back to the family picnic. At this stage, I have completely stopped paying attention to the person I was talking to. I apologise if you are ever this person. As parents, most of us have the understanding nobody is “fully” present when their little treasures are still learning to navigate the world. Yay for support vs judgement!
On to the next thought. My mind starts racing again, “That person must not have been here when I announced Billie’s allergies.
I need to go tell them and check who else is here that I haven’t told.
I need to go tell Billie I was proud of her for saying no.
Oh, and I must remember to wash Matilda’s hands and mouth..has she finished that sausage roll yet?!
Ah, maybe I should have stayed home…it’s so much easier!”
Since raising a bubble child is not on my agenda, I need to get that last thought of staying at home out of my head. What I need to do is take a breath, settle my racing mind and focus on working through the parts I can control and manage one at a time.
One of the things I can control is packing our food. The others,
- To always carry an epi-pen
- To make sure everyone at the party or gathering is aware of her allergies. Be clear that she is only to eat her safe food. Add in the final comment I still cringe at saying, “Please don’t kiss my daughter on the lips”
- For me to stay alert (and sober — that’s another story of social pressure!)
- For me to keep aware of Matilda
- Make sure to remind the girls to drink from their water bottles
- Make sure they wash their hands before they eat
- Make sure I keep track of what I am eating
- For me to keep empowering Billie to be aware and control her risks.
What I can’t control is how others take this on board.
I completely appreciate and understand why those who don’t deal with allergies daily may not understand all the facts. Geez, I am still learning myself!
I understand people want to include everyone when offering food around.
I understand we are all human and get distracted.
I understand we have different beliefs about how to treat a health condition.
I understand kids are going to touch things that others with allergens on their hands have touched.
I understand people believe they have found the next big cure for allergies and want to test it out on my kid.
But damn all these things make it tricky in a social gathering.
Especially when the people offering Billie food or a kiss are people she trusts.
There have been times where people truly believe they are offering my daughter safe food, but in the moments that follow there is a realisation that Oh! Whoops!
“I only checked it had nuts in it”. The reality was that it contained egg whites.
“Ah, it is just a carrot. It’s ok” Then the realisation when I make a point “Sorry! I didn’t think about the dip with nuts in it on the same plate”.
The list goes on.
I often start overthinking and wonder the impact it will have on Billie’s connections with people. Am I making her a leper? I know when I make the announcement and the preceding conversations and questions about her allergies make her embarrassed. I tell her, “I wish there was another way my sweet, but until we come up with a better way to keep you safe, this is the best your mum can do”.
No matter what challenges come up in our lives, I need to accept that I can only do the best I can do in that moment. I need to stay focused on what I can control, accept that life will happen and be as prepared as I can be.