It's hard to believe it has been a year since we were told the news of our 9 year old daughter's Coeliac Disease diagnosis. I remember that day so well. I was at work and saw the doctor's surgery's phone number pop up on my phone. OK, she's calling about her blood
work, no big deal I thought, low iron had been my suspicion. Never did I expect the words 'She is highly allergic to gluten, and has Coeliac Disease' to come through the phone to me that day.
At first, I went into "mum overdrive" as I call it. Ok! OK! Ok! This is going to be fine, we will cut gluten out and see the specialist and manage this, and all will be well. Gosh, how naive I was at that time to be so simple-minded about it all.
I did not know that I would spiral frequently about the long-term implications of this disease on my beautiful daughter.
I did not know how many socially awkward, uncomfortable, and downright exclusive situations my daughter would have to face, with my heart breaking for her.
I did not know how 'unserious' this would be treated by so many, and how some people would make me feel like I had somehow failed her.
I did not know how small comments from people, flippant by nature, would cut me so deep I'd have to walk away to pull it together to ensure I didn't upset my daughter.
And I did not know how many tears of my little girls I'd have to wipe, as the enormity of this all descended on her as the days, weeks and months went on.
Even now, one year on, my throat is choked up, and my mind races about what we've endured, overcome and what we have ahead.
I wish I had all the answers, but I don't. I'm navigating this all each day, balancing the juggle with my daughter of 'this is really serious and you can't eat gluten ever again' with 'don't worry your young head about this disease and enjoy being a kid' with 'no you cannot have an 'I eat gluten today' day - ever!' and the tears that follow.
Coeliac disease sucks.
Yes, we hear all the positives 'At least it is helped by diet' True! 'At least it's not anaphylaxis' True! But this one gets to me. At least anaphylaxis allergies are taken seriously, because they can cause immediate death. Apparently, slow and sick death isn't as serious.
And finally 'At least there are so many GF options available now' True! But the truth is, there is no substitute for the social impact that comes from being a Coeliac, the disappointment that there isn't a GF option at that fete, carnival, party, canteen, food truck, camp (the list goes on!), and the feeling that you are just 'that person who can't eat that thing'.
There's a long way ahead for awareness, acceptance, and inclusion for those who suffer Coeliac Disease, and I wish every single person who has to deal with this in their lives so much love and compassion.
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