I wrote yesterday about the #livinginfear campaign and started thinking about what that really means to me. I quickly realised that #livinginfear is not what I want for M or, indeed, for G. It is so important that they are both aware of their allergies and that M, in particular, could suffer adverse reactions to the foods he eats. They must take on responsibility for their own health when away from home and have an understanding about what they eat and what they have to avoid. They need to know how to deal with mild reactions and how to communicate their needs to the people around them, especially when in new situations, or when Mike and I are not there to speak up on their behalf. After our experience with the sweet potato trials, they now know that there could be other, more serious reactions that M’s not experienced before and that they could be frightening. Most critically, I need to teach them how to respond calmly should those reactions occur.
However, the most important thing is this: that my children are still children and whilst living with a chronic illness has forced them both to grow up a little faster than their friends and peers, I don’t want them shouldering adult worries or concerns, or feeling weighed down with fears that may never be realised. Until the point when they reach their majority, I want my children to laugh, play and simply live each day as children, trusting that Mike and I will always be there supporting them, ready to catch them when they fall.
The truth about #livinginfear for us is that it is my burden to bear and is about more that just the potential for serious allergic reactions. My fear is not even about M possibly suffering from anaphylaxis one day as, although the prospect of facing that is daunting, I trust that my parental instincts and ability to stay calm under pressure would get me through that most difficult of experiences.
No, that weekend highlighted for me what my true and biggest fear about his allergies and his health really is: that I will not be believed…that I will become “that” parent…and that the health professionals involved in my child’s care will doubt what I say, thinking I’m causing a fuss about something that is simply not true. The years spent chasing a diagnosis despite everything the doctors were telling us have taken their toll on my self-belief. I second guess myself at every turn. I discuss and dissect and deliberate my every waking thought about M with Mike to check that I’m not going mad, that he, at least, understands where I’m coming from and that I’m not being unreasonable or over-reacting to the situation.
Nothing demonstrates that self-doubt more than the fact that I insisted we tried M on the sweet potato again the following day when Mike was there, just so he could see the reaction for himself and confirm that what I had seen, and M had experienced, was true. Despite my natural concerns that it could have been an anaphylactic reaction, I needed Mike to be an eye-witness to it too and I had our back-up plans in place, just in case his response was even worse that time round (fortunately it wasn’t). I didn’t want to put M through the terror and pain of the reaction again, what parent would, but I needed to be certain that I hadn’t imagined it to be more extreme than it actually was.
I know that my confidence has been shattered by the very people who should have been supporting me and my family every step along the way – the medical professionals we’ve encountered on our journey. I am no longer comfortable in trusting my gut instincts about M’s health, even though I have been proved right time after time after time; and that’s simply not acceptable.
Being a parent is a hard enough job when you have a happy, healthy child – there are no superheroes living in secret in my local community as far as I’m aware; but the burden quickly becomes overwhelming once you throw a chronic illness into the mix. I find myself not always being able to state my case clearly or argue M’s corner when it matters most and I lie awake worrying in the middle of the night that the treatment I’ve demanded may not be the best course of action, or whether there was anything I forgot to mention at the most recent appointment. I know myself to be a strong, intelligent woman and yet I find myself being instantly returned to my school days, with all the mixed emotions of being sent to see the Headmaster, the minute I find myself facing a consultant.
And I worry that G is getting lost in the chaos that is hospital stays and food allergies and medicines and diagnostic tests and the relentless need to monitor, record and report everything. As she approaches her SATs and the prospect of moving up to “big” school looms ever nearer, my firstborn is growing up fast and I wonder how our relationship will survive the inevitable traumas of her teenage years when my focus so often has to be on her younger brother. Time together is rare and incredibly precious and something we both need and enjoy because I’m fully aware that I’m not necessarily getting this parenting thing right.
So, raising awareness this week has to be not just with the general public, although that is undoubtedly critical to protect the allergy-sufferers around us, but within the medical community too. For most of us, you are our firefighters and the people we are forced to depend on in our darkest moments. We need you to be strong, focussed and the experts that we are not, BUT we also need you to be gentle, compassionate and understand that you are holding the future of our most precious possessions in your hands. Don’t dismiss our concerns, but believe that we know our children best and have an insight or opinion that is just as valid as your professional one. Don’t belittle our emotions, but be empathetic when they overcome us and we need a shoulder to cry on more than anything else in that moment. Be honest, but in the kindest way, knowing that your words have the power to break us when we least expect it. Most of all, understand that we are constantly #livinginfear about our children’s health and life, so they don’t have to.
With 2 weeks left to the end of term, there’s so much going on that I’ve barely got time to sit down and commit any useful thoughts to paper, so I’m afraid this post is just going to be a quick update. We’ve just had our first appointment in the new “Complex gastro and nutrition” clinic that our consultant and lovely specialist dietician have started at GOSH. The thinking behind this new clinic is that for children like M, who have a chronic gastro condition such as EGID as well as significant, complex and multiple food allergies, there needs to be regular meetings with both a gastro consultant and a dietician to ensure that everyone is singing from the same song sheet when it comes to treating the health of that child.
With only 4 foods on our “safe” list out of 12 tried so far, it has been a much longer process to reintroduce foods back than any of the medics expected, although, to be honest, Mike and I had always anticipated it taking a full year, if not longer. At the moment, M is coping well with his tube and is keen to keep trying new foods, so there are no concerns that the presence of the tube is having a detrimental effect on him in any way.
7 years to diagnosis 