It’s what this week has been all about. A daunting brief when you think about it, something you never expect to have to do, but sometimes life has a funny way of turning all your plans and perceptions and pre-conceived ideas on their head and sending you off in a completely direction to the one you expected to take.
Without a doubt, every new parent looks forward to the journey they’re about to embark on, albeit often with more than a little trepidation about how they will cope and they start with ideas about how they will deal with feeding and sleeping and routines. They might plan to follow in the footsteps of parenting gurus like Dr Spock, or Gina Ford or Jo Frost, after all they’ve read the books and seen the TV shows; or perhaps they think they will take a more relaxed approach, where routine is dictated by the child and everything becomes an opportunity to learn. Of course, you quickly realise that however much you’ve studied the subject beforehand, your baby hasn’t read the same manual and your best-laid plans go out of the proverbial window. No matter the milestone reached – that heart-melting first smile, the scent of your newborn as she snuggles into your arms, the infectious sound of his giggle, 
that quizzical first taste of food or teetering first step – as Mum or Dad you’re there to love and encourage and cheer them on.
When we started our family, Mike and I prepared ourselves to answer their every question as best we could. We anticipated having to deal with the never-ending whys and knew we would need to find truthful words to reply to the most personal questions with simple honesty. We understood our role was to teach them about the world surrounding them, even the unpleasant bits, and equip them with knowledge and understanding and the skills to withstand the buffeting winds that life would inevitably send in their direction. We couldn’t know what storms we would need to weather together
There’s no question that having the responsibility of educating our community about the most precious of subjects is often scary, but it’s one I embrace wholeheartedly and honestly feel that it’s a privilege to have found ourselves in this role. It’s about so much more than being M’s advocate or defending G’s corner, although those form the greatest part of my job. It’s about sharing the lessons I’ve learned and, with that, it has become about explaining to others the nature of M’s chronic illness and the impact it has on our lives. This morning we spent a few hours at our community market, our information boards proudly on display, leaflets ready to hand out, a few bits and pieces placed to try to raise even the odd penny more for Over The Wall and most importantly, a smile on our faces that meant we were willing to answer questions, to explain, to share even the tiniest bit about EGID.
By the time we finally gave in to the cold and the rain, packed up and left, I had spoken to over a dozen people, who wanted to learn a little more and were genuinely interested in what we had to say. Not only had we had opportunity to teach our community, but I found that in response, people had felt able to share their stories and really talk about things that were close to their hearts. A lady whose daughter had been oxygen-starved a birth over 30 years ago and who had sadly lost her last year was able to empathise with the challenges of juggling family life and meeting G’s needs as much as we do those of M. Another woman, who had been diagnosed with Coeliac disease a few years previously, shared her disappointment that those around her still struggled to offer gluten-free options, 
instead simply opting for something “safe”, but infinitely less satisfying such as fruit or yoghurt to replace the cakes and biscuits they were enjoying. And a family, who had seen our story in the paper and were longing to talk to us about their daughter, who had been struggling with gastro issues, eating disorders, anxieties and food intolerances since she was 11 and even now, at 37, found the medics lacking insight and understanding and unable to help. I don’t know that really I could give more than a sympathetic ear and insights from our own experiences with M, but I also know just how valuable those small things can be.
Have we achieved what we were hoping from this week? I think so. I’m proud that we’ve worked hard as a family to raise awareness of EGID and hope, that in some small way, we have taught our world a little more about it.
How do we define a hero?
Of course, I obviously can’t ignore the fact that my blog focuses a lot on the impact M’s complex food allergies has on our everyday life. So much of my time and energy is spent researching, adapting and learning more about how to feed him varied meals whilst coping with such a restricted diet that food allergies undeniably rule my kitchen. As a fellow EGID Mum recently posted, every single aspect of our children’s lives are affected by food, no matter how many food allergies they are dealing with. Everything has to be planned and thought about, there can be no leaving things to chance and there’s rarely an opportunity to be completely spontaneous. At home, at school, going out for meals, tea at a friend’s house, family gatherings, holidays, hospital admissions, trick or treating, birthday parties, Christmas, Easter, the list is endless and all-consuming. There’s also unquestionable irony in the fact that we as a family will be “eating like M” to draw attention to the eosinophil awareness week. The reason? I know our restricted diets will allow us to engage with others who will be intrigued by the limitations and in turn that will enable us to share the EGID story too.
We’re marking our 4th National Eosinophil Awareness Week and despite all our best efforts, I still find myself spending a lot of time explaining that there is more to M than his food allergies. This year is a particularly tough one as there is a lot of uncertainty and discussion in the medical community about the validity of EGID as a diagnosis. Hospitals and their consultants are questioning whether EGID is really anything more than complicated food allergies, but they are failing to talk, and more importantly to listen, to the families who are living with it on a daily basis, who are surviving those symptoms I’ve mentioned above and who are having to battle to get their voices heard. Some parents have found themselves in a situation where treatment has been removed suddenly because the veracity of their child’s EGID diagnosis is under review and are left watching their loved ones spiralling back into chronic ill-health whilst the medics argue over whether EGID exists. I can’t predict what the next 12 months will bring for those of us living with the presence of EGID in our families, but I do know, without a shadow of a doubt, that we will all continue to fight for ongoing good health and that every battle won is a huge success.![IMG_0391[1]](https://7yearstodiagnosis.com/wp-content/uploads/2016/05/img_03911.jpg?w=225&h=300)
You might think that the possibility that a full leg cast would prevent regular bathing would bring joy to the heart of any small boy and, as far as my 10 year-old is concerned, you wouldn’t be far wrong. He spent the first night back at home pouring over the “How to look after your cast” leaflet that had been given to us on discharge and, having inwardly digested all the salient facts, made his opinions on the matter quite clear:
![IMG_0409[1]](https://7yearstodiagnosis.com/wp-content/uploads/2016/05/img_04091.jpg?w=225&h=300)
What is even better is that the seal means that air is trapped around the leg and it becomes self-supporting, effectively allowing the leg to float in the water without any effort on the part of the child. That was the bit the M liked best!
It’s hard to believe that we’re already at the start of May, which means that in just 12 days time, it’ll also be the start of National Eosinophil Awareness Week 2016. For me, every year seems to follow the same pattern:
so!
We’re halfway through the Easter school holidays and, with my Mum on her travels once again and me committed to work, Mike has taken some time off from his job to be on childcare duties for the duration.![IMG_0301[1]](https://7yearstodiagnosis.com/wp-content/uploads/2016/04/img_03011-e1461243747370.jpg?w=187&h=300)
With very little debate and a hurried phone-call to A&E, we were soon back in the car and heading to the hospital, this time determined not to leave without an x-ray. The nurse assessor admitted on the phone to Mike that she had been reflecting on M and regretting discharging him without an x-ray, so for once we were happy to be visiting our local A&E again.![IMG_0302[1]](https://7yearstodiagnosis.com/wp-content/uploads/2016/04/img_03021-e1461243806635.jpg?w=300&h=249)
The next few weeks are going to be tough and not just because of his broken leg. M is going to have to find a fortitude he’s never had before as he misses out on a much longed-for dream because of it. He is extremely disappointed, but courageously trying to take it in his stride, with the smile on his face we all know and love. I can see the hurt deep in his eyes, but we will hope that something even better comes from this disaster. What saddens me even more is that he really has been the victim in this situation. His broken leg is not due to careless or reckless behaviour on his part, but down to the action of another child. A child who probably has no idea of the physical damage to M’s body, let alone the other far-reaching consequences of his violence towards my child. I’m still reeling from the shock that a child of a similar age could cause such injury; disturbed that a family could leave without checking on his well-being and left hoping that my children don’t lose their beautiful skill of making friends of strangers wherever they are, even though the consequences can unbelievably be so devastating. I fear that this incident will leave an emotional scar on them both that will take a long time to heal.
7 years to diagnosis 