Being in lockdown gives us all a little more time to think, reminisce and sometimes over think how our lives were before this pandemic. Well I have been doing this a lot lately and just wanted to share these thoughts and well, see if anyone else has experienced similar.
With Jasmine having multiple food allergies of which some cause an anaphylactic reaction, as well as Coeliac Disease, eczema and Asthma , informing family, friends, schools and any other place we would visit to make sure Jasmine would be safe is imperative. We would get the 'stares', people 'rolling eyes' at us, 'tuts' bad attitudes, whispers and in a lot of places made to feel un welcome. Jasmine looks just like an average seven year old would expect to look and because aside from eczema you can't see her other medical conditions people assume you're that dramatic, over zealous parent!! If only that were true! Safe to say we know where to avoid!
We had a big circle of friends, different groups we could hang out with and get invited to places, but we noticed as Jasmines list of allergies grew our social invites shrank! We all know that food is at the centre of most social gatherings; birthday parties, cinema trips, play dates, going out for tea, picnics in the park and even just going to a friends after school. All should be pretty straight forward and easy right? Food allergy sufferers and their carers always have to pre plan in advance, who will be there, do they know about allergies, will it be safe, what food are they having, what food can I bring to the party, what will they eat, will they feel left out, the list of worries is endless, so I guess if its easier for some parents not to have to do this by not inviting you then why would they?
This has made us realise who matters who doesn't and what really counts.
There have been times when we have been with people and pre warned everyone about allergies but still unknowingly, there has been food with her allergens right there and that for Jasmine is literally a matter of life or death, you can feel the atmosphere change, the looks of 'oh god she is so dramatic' darting between each other, when I rapidly move her out of the room to safety, then I feel myself having to over explain. Unless you see a full blown reaction and how quickly it can take hold of you it is really hard to understand.
I watched my daughter have this horrendous anaphylactic reaction before my eyes and I honestly thought i was going to lose her that day, for a parent to see their child slipping away before their very eyes is a living nightmare, no one should ever have to witness that and no child should ever have to suffer like that. That day we were very lucky, very lucky indeed and not a day goes by that I am not thankful to the paramedics who were with us in a matter of minutes.
After that day our lives changed for ever, it was no longer a case of just living with multiple food and environmental allergies, it was quite literally a matter of ensuring my daughter could, live a safe life every single day and still have the childhood she deserves. Everything in our house that was possibly dangerous was removed, everyone we came into contact with, family, friends, schools etc were informed we had a new companion to take everywhere with us, our trusty medical bag, containing 2x adrenaline pens, antihistamines and an inhaler.
As a parent and carer of someone with anaphylaxis I took my responsibilities very serious, there was no way if I could help it that I would every allow Jasmine to suffer a reaction like that, I put my self on many Allergy courses to thoroughly understand how these reactions work, I trained how to safely use the Adrenaline pens and every single day I am researching and upping my knowledge on how Jasmine can be in society and remain safe. At seven years old Jasmine sufferers terribly with anxiety and suffer with food aversions, its quite difficult getting your head around some foods are so healthy for others yet so fatal for her. I am teaching Jasmine to cook and she has already mastered a few dishes, this is not only a valuable life skill for her but, also a way to help create a positive relationship with food for her, which is so important given her circumstances.
Jasmine also has quite bad night terrors, which are increased by anxiety and sometimes antihistamines, this is something we are working on and trying different techniques, some nights they work some nights they don't, its like a new born baby lives here, but hey sleep is overrated anyway!!
For now, in lockdown we are in our safe haven, without having to worry too much about the outside world and fitting in, so our worries are reduced slightly and that is always a good thing!!
Stay safe xx
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