Aars is 14! And what an eventful fourteen years it has been!
Last night we were looking through the mahooosive scrapbook I made him for his 13th birthday smiling and laughing at the memories they triggered, remembering the incredible adventures we have enjoyed. There are a couple of photos of two pages interspersed in this post, like little flickers of candle light – they give me a much needed reminder of love, life, joy, friendships, hope…
Looking through it I was (once again) impressed by his incredibly positive attitude to food, his creativity, his awesome joy in living. I am so proud of him, and the beautiful whole being he is. That he does not allow sickness and disease to define him. I feel honoured and grateful to have been entrusted with his care. BUT I wish I could do a better job of protecting and shielding him, of helping him be healthier and stronger… of enabling and empowering him.
A year ago, on Aars 13th birthday, I wrote a blog post on the positives of living with Anaphylaxis. I was amazed that I had managed to get him safely into his teens. I was still optimistic about our chances of migrating away from Anaphylaxis towards more mundane food allergies. You can read about it here – as it still holds true – we do appreciate every day we get together, we don’t take life and experiences for granted, we do seek adventure and make sure that we live full and fulfilling lives…
BUT two days after Aarons 13th birthday he had an appointment with the paediatric gastroenterologist at the Royal Free to get the results from biopsies taken on August 15th 2016 by Sally Mitton at St Georges. Sally Mitton (‘Silly Mittens’ we call her) had not given us, our GP or the Aarons allergy consultants at the Royal Free the results of the biopsies.
Thus, on the 9th March 2017 we found ourselves ourselves receiving the shocking news that he had been diagnosed with a rare disease by the lab back in August 2016. Silly Mittens had chosen not to impart that information to us, or any of Aarons doctors or consultants.
He had a definitive diagnosis of Eosinophilic Esophagitis (EoE) and Eosinophilic Gastritis (EG). There is no cure currently (it’s a modern disease), but there are various ways of managing it. He was already on the restrictive diet due to his multiple severe food allergies, the only new thing to try was cutting gluten out of his diet, which we had done in spite of Silly Mittens, as we’d seen a huge impact on Aars energy levels and heath when we had cut it out previously. An op and biopsies last summer proved that cutting out gluten had been highly effective in managing the EG. The EoE however was still extreme.
Aars then went on a course of oral steroids and had another endoscopy last week. Tomorrow we go to get the results. Our hospital experience last week was good, the photos of his oesophagus taken during the procedure look like they it has responded well to the months of steroid treatment. His stomach and intestine not so much – they look worse than last time.
Thus, tomorrow is hanging over us – looming like an ugly thing. It is hard to resist the dread and memories of last year even though I’m hoping that the news tomorrow is going to be positive about his oesophagus.
Life is full of twists and turns, it’s a rollercoaster, it’s a learning curve, it’s a b!tch… there are lots of sayings… and they’re all true to some extent… it’s unpredictable, there are few certainties in life beyond birth, death, eating, drinking, suffering and weather!! BUT we are resilient beings, and can also ensure that we create some certainties of our own – of love, laughter, friendship, kindness, compassion, gentleness, joy, peace, fulfilment, meaning, adventure, creativity, music, dance, travel, perspective, understanding, …
It’s been a tough year for us, but during it Aars has discovered a remarkable talent for photogography. You can check out his work on his Instagram account: https://www.instagram.com/aaron_edmonds_photography/
And we have seen true friendships consolidated and feel very blessed to be surrounded by people who see Aars for who he is, rather than through lenses of pity or sickness. Hopefully in the long run we will look back on the last twelve months and see that it genuinely made us stronger as individuals, as a son & mum, and in our genuine friendships with those in our worlds!
I tell Aars all that time that adaptability is vital for survival, that being flexible is a huge advantage. Like a reed which can sway in the wind or the gales which life hurls at us sometime, unlike the brittle, hard sticks which snap and break. True strength is found in gentleness, softness, fluidity… not in hardness or force; and I think all these tough experiences are enabling true strength to flourish – we are getting pummelled and battered into tender, adaptable souls! The snow falling in fragile flakes whilst we were at hospital last week seemed to affirm that concept of the great strength of the seemingly weak as the world was smothered in a beautiful blanket of white.
I have been pretty consumed over the last year with the diagnosis of EoE and Eg, and the quest to help Aars survive it and manage it. As a result my blog has fallen by the wayside a little; we have lost more foods and I have been focusing on finding ways to feed him, not faffing about taking photos of food and the recipes I’ve developed! Hopefully I will get back on track if we get some good news and a feasible management plan tomorrow. I will keep you posted 🙂 If you made it this far, thanks for reading.
Namaste and Peace to you, wherever you may be in life at this moment, I feel like I am barely here…