To be seen To be heard For emotions to be conferred To feel like you aren’t alone Navigating the unknown Finding words of another An empowering way to discover A circle of support and care Challenges become lighter to bear Energy left for healing Instead of despair
A home for enlightening infinite possibility
Along the trail of gathering feedback for Pete the Peanut and his mates, I came across Tabitha J Page.
When we seek, we find – right?
We shared an email and then a laugh over a Zoom call as I drilled for advice on releasing medical type books for kids.
Tabitha has authored five children’s books. Four of which feature characters with a long-term illness or disability — another one on the way!
By the end of the conversation, she told me about a project she had been thinking of.
Before the sun had set that day, she had a logo, a promo vid and a skeleton of a website in place!
What is Forevability about? Well, the words directly from Tabitha’s mouth explain it best.
Created by children’s author and disability advocate Tabitha Page, Forevabilty aims to make it easy to find books, podcasts and more which focus on disability, illness and other specialized subjects. We hope to inspire, empower, teach and support.
Honoured to have a tiny hand in to help it on its way.
Amazing where a “quick chat” can lead!
AND…added to which, Forevability is excited to announce its first-ever Book Awards.
The list of judges and prizes is nothing short of amazing.
Submissions open on 1st November 2021… wooohooo!!
If you, or someone you know, would like your/their book to be entered into the competition OR listed on the Forevability website for free, please check out the submission pages for more details.
Please shout out in the comments or via firstname.lastname@example.org if you have a story you would like to share about allergies. I would love to add them to the publication on Medium — Allergy Angst or reblog here on WordPress.
The power of sharing your story is what is driving me— so — NO writing or grammar police here. My sole wish is to read and learn.
Disclaimer — I have only the bare basics on how to run a publication and wordpress blog for that matter — but certain I will find my feet along the way.
Feature Image – Matilda — 5 minutes after eating traces of eggs — sneaked a lolly from her sister’s party bag
I was barefoot and wallet-less the day I found out my daughter, Billie, had an anaphylactic reaction to peanuts. Eggs and most tree nuts were added to the “prone to anaphylactic reaction” list in the coming months.
Was expecting to do a quick pick up from my parent’s house, head home and catch the last online work meeting for the day.
Well — as we know, plans can change — in an instant.
When I arrived, I took one look at Billie and knew she needed help.
Her face was swelling to a point it was unrecognisable.
She was pulling at her throat and coughing.
At 20 months old, she didn’t have the vocabulary to tell me what was going on. Her body clearly showing something was not right though.
Billie had swiped some of my Mum’s peanut butter toast minutes before I got there. She had eaten it before, but this time she ended up with very different consequences.
I put her in the car with my mum sitting next to her and sped to the local chemist.
What I should have done is phone for an ambulance.
It was all new to me, and in the moment, I did what I thought was best.
The chemist was like — um no, not our department —quick, see the doctor next door.
We were rushed through. After a quick jab in her leg with adrenaline and an ambulance ride to the hospital — the emergency doctor was telling me Billie had had an anaphylactic reaction.
We are forever grateful to each of those who helped care for Billie that day. And each day since.
The emergency department was and is constantly filled with so much hustle and bustle; I completely understand how the care and attention from staff is stretched.
During the seven hours in observation, we were given a short video to watch that showed us how to use an epi-pen, filled a script for two epi-pens and was told to book in to see an allergist.
It all felt like a whirlwind.
A journey started that I had no idea would change our day-to-day life as much as it did.
This was the first time I had ever encountered allergies in my life—most of what I saw in the video forgotten in the stress of the moment.
It was 6 months until we could get in to see the allergist and Dr Google was terrifying!
As a new mother still figuring out how being a parent fit into my world, adding allergies and anaphylaxis to the mix, well — the combo was confusing, to say the least.
These days, thankfully, there are some amazing resources available, but still, I have heard from other parents of the newly diagnosed child kind, these nuggets of information aren’t given straight up. The waiting lists for specialists expanding to over 12 months now.
It is a seek and maybe find game while they wait.
These are 5 things I wish I could tell the Mum I was 6 years ago. Sharing them in hopes others may learn from my insights and avoid some of the pain and strain of walking into the unknown.
1. It is not your fault
I didn’t hear these words until a few weeks ago.
It wasn’t during an appointment either.
It was from a specialist hosting an allergy research seminar I went to at the hospital.
Instead, I got questions like,
“Didn’t you eat peanuts and eggs when you were pregnant?” — Yeah, I did eat them
“Do allergies run in the family?” — No, not that I know of – until now
“Didn’t you feed your kid eggs and nuts before they were one?” — Yep, did this too
Questions that made me feel like I could have done something to prevent my child from becoming anaphylactic.
A stigma that triggered a feeling of guilt in me. Guilt that I carried around for way longer than necessary.
The fact is, they don’t know exactly why people get allergies or anaphylaxis.
Or why the stats in Australia are currently at 1 in 10 children that will get diagnosed with allergies or anaphylaxis.
I have heard many theories and have some of my own, but none are 100% consistent or proven. There is no one answer that fits all.
The day I heard the words “it is not your fault” from someone with letters after their name — well — it felt like a massive weight had been lifted.
So please — let go of any guilt you may be holding on to. It ends up draining your energy. Energy that is needed to help your child and save your sanity.
The quest to find an exact reason has even the experts stumped.
Certain there is an answer out there waiting to be discovered, but I have a strong “feeling” it will not be a singular root cause.
The more sharing we do, the more answers will surely come with time.
If it helps, remember there are cases where only one twin has allergies and the other doesn’t.
Proof in my mind that it isn’t a clear-cut link to environmental or genetic causes in, or ex utero.
2. Reactions are rare, but the management of risks is everyday
I didn’t fully comprehend the management of allergies until the lessons started coming in thick and fast.
My sister had eaten a pasta salad for lunch one day — it had an egg mayonnaise dressing on it. Several hours later, she kissed Billie on the lips. She reacted — vomiting bile for around 12 hours, hives and welts all over her body. What is classified as a mild reaction.
BUT mild reactions can turn into anaphylaxis quickly, so still must be monitored carefully.
Lesson learned. No kissing on the lips.
Then came the birthday parties.
One that stays with me most was when Billie was two. After the candles were blown out and the cake was eaten — sorry the icing was licked off the cake — what is with kids only eating the icing?! — kids were left with eggy crumbs all over them.
One of them gave Billie a nice big hug. Adorable right.
Next minute — yep, you guessed it more bile — all over Mum- aka me!
I was pregnant at the time and barely coping with morning sickness. Hence the vivid memory of driving home with spew all over me while keeping an ear out for Billie’s breathing. Side note — whoever named it morning sickness never experienced morning sickness! It can strike at any time — day or night!
Then there is the restaurant scene.
Check there are things on the menu that are allergen-free.
Yep! Happy days.
Give the run down to the waitress working when we arrive.
Order the plain margarita pizza as planned — tomato, buffalo mozzarella and basil as listed on the menu — check with the waitress again as we did on the phone that the base is allergen-free.
Hand over Billie’s allergy card that outlines once more that she is anaphylactic to eggs and nuts. Check.
Pizza comes to the table.
It’s delivered with a pesto swirl on top.
Well, pine nuts are a no go, so back it goes. Apologies galore. Don’t know what happened.
Yep, no worries — we understand.
Second time out —
Presented beautifully with swirl of garlic aioli – aka fancy mayonnaise made with eggs What the?!
No — now we don’t understand. Trust well and truly broken.
It was at that point we knew we couldn’t order food for our daughter when we were out.
4. Society will not understand on the same level as you do
As the old saying goes — you don’t fully understand another until you walk in their shoes.
Unless you live the day-to-day, it is so easy to be blasé about allergies.
The number of times I hear —
“She will grow out of them.”
“Isn’t there a jab they can give them now”
“That never happened in my day — you need to give it to her more.”
… is incredible.
Yes, these are all thankfully possible, but in that exact moment, it may not be possible for a number of reasons.
Each case is different.
Each person is in a different stage of their allergy journey.
If someone is talking to you about it, then for them it is still way too risky to be exposed to the allergen and the likelihood of them having an anaphylactic reaction is too high.
The knowledge and understanding is growing, but, for the most part, people won’t get what you go through each day to try and keep your child safe — on top of the usual safety measures parents take.
Sharing your story helps the amplification of the risks.
Be loud, be repetitive.
Your sharing helps keep your kid and others safe.
We can’t allergy proof the world, but the more people that know about them, the better.
5. Empowering your child with knowledge is crucial
When you can’t be there for your child — at daycare, school or even in the care of friends or family, they need to become their own advocate as soon as they can.
They need to know what their allergens look like, how to read them on a label, what questions they need to ask to keep themselves safe, when and how to use an epi-pen.
I have seen kids as young as 3 ask if the chopping board used to cut up something was used for cutting up their allergens.
They can do it.
But there may be times they forget. And times others forget.
Billie had a mix up at kindy one day.
The class was decorating cupcakes for someone’s birthday. Even though I had ensured there were egg and nut-free alternatives for her in the school freezer she ate the cake.
I imagine she got caught up in the fun of decorating a cake and simply forgot.
As her teacher did.
Easy to do in a classroom with over twenty excited kids.
Well — that didn’t turn out so well.
Her teacher, who ended up covered in bile, and her learned a valuable lesson that day.
Such is life with allergies.
Remember, it is nobody’s fault your child has allergies and is prone to anaphylactic reactions.
The reactions are rare, but they happen. And they can be fatal.
Being aware is paramount, but so is being able to have fun.
As a parent, you can never fully switch off BUT the balance is possible when we accept we can’t allergy proof the world; take the steps we need to take to minimise the risks and ensure everyone, including our child, is as aware as they can be.
Written from the perspective of my daughter, Billie.
When I was one, I swiped some peanut butter toast It was up high so I had to climb, not that I’m gonna boast It tasted delicious but something wasn’t right My eyes felt funny and my throat a little tight
Mum said, “That’s it. To the car right away!” Off to the chemist without delay He took one look and pointed us to the doctor Who pricked my leg cause my breathing shocked her
Off with my mum in the ambulance, I went Straight to a hospital, she said that meant For 6 whole hours, they made me sit I was also poked n prodded a bit
Mum and Nanny kept me entertained And a cool new cardboard hat* I gained I’d be tired after, the doctors said But I was in no mood for bed
Mum says I hardly slept a wink I reckon I was just trying to think What it all meant and why my eyes still felt tight Next time I’ll stick with vegemite
Eggs also make me feel yuck Any trace of them and I upchuck
A special allergy man checks my progress He draws on my arm as part of the process Then nicks me with stuff that makes me itch I sometimes scream at a very high pitch!
My family and friends are helping me learn To be aware and safe is their main concern
I carry my epi-pen every single day And before I eat remember to say
“Does this have eggs or nuts in it?”
PS: before you kiss my loveable cheeks or use my water bottle Please know, the smallest trace can trigger reactions full throttle
*the hat was a hospital spew bowl as shown in the pictures
Tonight my three year old said to me Mum it’s ok just have a laugh The grump in you will disappear you’ll see
That’s exactly what happened as soon as she spoke Cleared expectations of being mum to share the joke
Releasing energy stuck in the land of what if Back into the moment of now Sparked by humble words my children gift
I was feeling grumpy tonight. My girls were being absolutely crazy. Overtired from the fun over the weekend and a day home from school to rest and tame some sinus related consequences from a couple of allergy reactions during the week.
It is prime time for injuries just before bed.
I was scared in what ifs of heads hitting the tiles or bed heads.
Running low on the zzz’s all week.
A perfect recipe for me to get my grump on.
I know, I know better.
But, I am human after all, and my limits were pushed.
Futile attempts to calm them down were unmet.
My expectations not even being heard.
I was growing more and more frustrated for not getting my own way and I had a tantrum. Yep, I admit it. I have them from time to time.
It subsided as soon as my three year old calmly sprouted her humbling words of wisdom. She responded consciously to my unconscious reaction. Have a laugh Mum and let it go. Come back and share in this moment of now with us.
Simple as that. She forgave me and calmed me down.
Abundance of superpowers has to come first to quench my infinite thirst Balance and peace, to make the race cease Clarity for all, consciousness will have a ball Dreams to aspire, drama to expire Empathy eradicating evil egos Freedom of mind, for us all to find Gone the guilt that society built Honest and transparent systems in place, consequences for those in power to face Inspiration narration, frustrations cessation Judge-less, support more Kindness curing blindness Love — what else needs to be said — love or above bred Magical miracles for the masses Nature being nurtured Opulence outdated, simple simplicity rated Positive panda, not propaganda Qi the key Respect for all Sentient beings Trust each other are doing their best Understanding for the rest Vision for humanity, not insanity Wisdom on tap, no trace of a cap Xeniality the reality Yielding fields wields hunger shields Zealous living forever giving
Superpowers that can be free for any of us to use, any time we choose.