Tag Archives: honesty

Reaching out

I am, without a doubt, a firm believer that things happen for a reason and that the lessons I’ve learned, the situations we’ve survived and the successes we’ve fought for and achieved over the last few years have given me an understanding and empathy that nothing else could have done in the same way. I have discovered within myself a strength I didn’t know was lurking, which has seen me through some of the darkest days I’ve ever had to face. My Mum and Aunt love to remind me I come from a line of strong women and these challenges have helped me grow even stronger. The struggles I’ve had to face have enabled me to reach out and bring some comfort and reassurance and offer an ear always ready to listen when others have most needed it. What’s more, not only can I speak from a shared experience and the common bond of parenting a child with a chronic illness, but I want to give support when it’s most needed. you-never-know-how-strong-you-are-until-being-strong-is-the-only-choice-you-haveThat incomparable insight is what almost makes the challenges of M’s health worthwhile, for whilst I would give anything for him not to have to live with a rare illness like EC, it has, without a doubt, given me a compassion and understanding beyond what I would otherwise have known.

When setting up my blog 3 years ago, part of the process was to pen something that would honestly capture who I am and the reasons behind my decision to start it to include in my “About me” page. I won’t deny that this blog has undoubtedly become an inexpensive form of therapy for me, allowing me to explore my innermost thoughts and feelings about the chronic illness that has dominated so much of the last 10 years of our lives as well as sharing our experiences of it; but that wasn’t my raison d’être. What I wanted most was to be able to reach out to others who were facing similar challenges “…if I am able to speak to the heart of even one parent who is going through the same turmoils, then I know the hard work will have been worth it…” In the months since I first wrote down that somewhat ambitious desire, I have received the occasional e-mail telling me that what I’ve written has really resonated with another parent, responses that have meant so much as they acknowledge an achievement of my goal above and beyond what I originally wanted.

Knowing that I have received those messages you could easily assume that I might consider it a job well done and just leave it there, but over the last few weeks I have received more messages of encouragement than I ever anticipated and have found myself in the position of being able to offer support and advice when I least expected it. Those opportunities have drawn on the many facets of my life experiences, from seeking a diagnosis of EC to coping with a new diagnosis of T1D and from facing the daunting reality of tube-feeding to the challenge of switching a child to a gluten-free diet. What is even more amazing is that the people I’ve been talking to have been a mix too: Mums from school, friends met through support groups and those just looking for reassurance from someone who has already walked the path they now find themselves on. I don’t claim to be an expert in any of these things, but I am an expert in my child and our experiences and can offer an insight into how we have coped and the tips I’ve picked up along the way. When we started out on our search for a diagnosis for M, and then again when we made the decision to move to tube-feeding, the information readily available was scant and it took dedicated research and hours of reading, and re-reading, medical journals and the such-like to even begin to understand what we were facing. It was thanks to on-line forums such as FABED and PINNT and their members that we began to truly comprehend the complexities of life with a chronically ill child. social-media-treeMy blog has simply been an effective way to put all of our experiences into one place, hopefully with some useful pointers for others in the same shoes and, by doing that, to create my very own, very personal resource.

What’s even better in my opinion is that my passion to reach out and help others has been adopted by both children too. G has developed an empathy and understanding that extends out from the home into the classroom and wider world, and which has been commented on in recent weeks by her teachers and the volunteers at camp. She shows an amazing amount of tolerance towards the challenging behaviours and differing views of her peers and is always prepared to listen and respect what they have to say, whilst standing her ground with her own opinions. G is also sympathetic to those who are in the same position of having a sibling with a chronic illness and can fully understand the frustrations that the sometimes difficult behaviours of those siblings can cause. Whilst sometimes reluctant to deal with M at home, she never hesitates to offer help to those around her when it’s needed.

In similar fashion, M has developed a compassion that I can only attribute to the reality of a life altered beyond recognition by EC and multiple food allergies. At a recent birthday party, one of his friends was confined to a wheelchair due to an ankle injury and M immediately stepped in to make sure this friend could be as involved as possible, despite the constraints of the wheelchair. He took the time to push his friend around the garden so he could join in the activities and toasted marshmallows on the camp-fire for him, even though he wasn’t able to eat them himself. Likewise, another good friend has just been switched to a gluten-free diet and M has made sure he sits with him during lunchtimes at school to discuss the different foods that C has been trying. The parent of this friend rocked my world nearly 3 years ago by inviting M home for tea and being willing to cook to suit his complicated needs, not just that one time, but numerous times since. It feels rather wonderful to know that my boy is now returning that favour and giving this friend the chance to vent about his new diet.

I don’t know what the next few months will bring and the opportunities to offer support may start to dwindle, but there’s one thing I know for sure, as a family we will all continue to reach out and help out whenever we can.

reach-out

Blind Date with a Book

Books HDThere is nothing G loves to do more than read; she really is her mother’s daughter when it comes to that particular pastime. Whenever she has a spare 5 minutes, and even if she doesn’t, you can usually find her with a book in hand, curled up somewhere quiet in the house. In fact, if you ever need to track G down, the best place to start is her bedroom as the chances are you’ll find her on her bed, engrossed in the story unfolding before her and completely lost to the outside world. Mike and M will willingly tell you that I am no different, much to M’s disgust, so the occasional times when it’s just G and me in the house can be surprisingly quiet.

read-for-my-Not long into the new term, G’s secondary school announced that they were taking part in  Read For My School 2016 organised by the Book Trust, which encourages children in Years 3-8 from across the UK to see how many books they can read between Christmas and Easter. Every school that takes up the challenge is given access to the RFMS website and each pupil registered has an on-line diary in which they can record the books they’ve read, make recommendations, write book reviews and even access some books on-line to read. G was excited by this opportunity and has been faithfully updating her reading record on a weekly basis, not least because both RFMS and her school library have offered the incentives of prizes for various achievements to the students taking part. I have asked G to be completely honest about the books she adds to her list and only include those she has actually read since Christmas, telling her that others may be a little unscrupulous when it comes to winning prizes, but that I want it to be an accurate record of her reading habits.

As well as this reading challenge, the school library has been running other events throughout the year to encourage their pupils to read, an approach which has really impressed me. At the start of the school year, G wrote her reasons for wanting to meet author Huw Powell and during 20160210_160919the recent half-term, she penned an acrostic poem as part of another competition to mark Harry Potter night in early February. These initiatives not only encourage the children to read, but also help them develop key writing and literacy skills in a fun way, something which really benefits G as, despite her passion for reading, she struggles to capture her imagination and express her thoughts on paper.

Just before half-term, G came home absolutely buzzing with excitement about the “Book Blind Date”, which she had taken part in during her day at school. This time the school library had wrapped up a number of books and added a tag which simply contained 3 or 4 words hinting towards the theme of the story. G had chosen one which intriguingly stated:

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and was desperate to see what book she had picked. She waited until we got home and then, with great fanfare and both M and me watching, she ripped the paper from the front cover to reveal her selection. Her choice, 20160210_160938“Shipwrecked” by Siobhan Curham, was something she’d probably never have chosen for herself, but this fantastic idea of a blind date with a book really appealed to her and offered her a new author to experience and perhaps a new genre to further explore. I loved this particular event as it grabbed G’s attention and those of her friends, as evidenced by the flurry of text messages that followed the grand reveal as they compared titles, and even appealed to M, who is desperate to know whether he’ll have the chance to take part when he’s in Year 7!