Image courtesy of Natalie Long
Image courtesy of Natalie Long
Another year gone, another year making memories that we can’t share and another year missing you. It hardly seems possible that it’s 15 years this year and yet it is.
No sooner have we just about stopped celebrating my Mum’s 70th birthday (there are a couple more presents to enjoy over the next few weeks), but it’s time for Mike’s birthday – and on a Tuesday of all days. Tuesday has to been one of the worst days to celebrate a birthday in our household – M has his dyslexia lesson after school, G has an hour’s tutoring to prep her for her GCSEs and we head to our local swimming pool for our half hour session between 8.30 and 9pm; and it’s pretty much non-stop until bed.
So, instead of even attempting a meal out or raucous party night, we had a rather low-key celebration over the weekend with a scrumptious buffet-style spread and bottle of wine for the adults in front of Strictly on Saturday and marked the occasion that way.
Happy birthday Mike – we love you very much xxx
When I realised that this year’s World Mental Health Day was focusing on the subject of suicide and suicide prevention, I paused. I wasn’t sure that this was an area that I could write about knowledgeably and, in fact, even as I write this blog post now, I’ve got a constant thought in the back of my mind that it could be just as easy to press “delete” as it would be to press “publish” when I’ve reached the end of my musings.
I’ll be honest, suicide is not a tragedy that we’ve had to deal with firsthand. I know friends and colleagues whose families have been shaken to their very core because of the unexpected and sudden death of a loved one, but I can’t pretend to understand just how difficult it is to come to terms with that death, deal with the impact of it or find a way to somehow carry on with life “as normal”.
Can I understand what leads someone to believe that death is the only answer to their problems? Possibly.
I’ve never been in the position to feel that there is no other escape, but my own experiences with depression over the years due to my T1D, following the traumatic birth of M and the massive mental health impact of workplace bullying do perhaps give me a slight glimpse of how frighteningly easy it is to spiral downwards into the darkest of places and not know how to climb back out of that hole. Sadly, it’s been a truth we’ve also had to face with M in times when he has struggled to come to terms with the reality of his chronic illness and all the consequences that come with that; and we’ve watched G battle to overcome the challenges of having a sibling with health challenges. I’ve written about these experiences and how they’ve affected me, G and M many times and you can find those posts through searching “mental health” or “bullying” on my blog.
Today I saw this image posted on social media by our local NICU ward, a place I know well after the births of both G and M, and it perfectly encapsulates everything we should be teaching our young people about their own mental health: that no emotion should ever be considered to be wrong and, most importantly, that it’s okay to not feel okay.
12 months ago we #putoursticksout as the ice hockey community around the world were united with that in Canada in grieving the tragedy of the bus crash that took the lives of 16 young people, their coaches and advisors and forever changed the lives of their families as well as those of the 13 survivors from the Humboldt Broncos hockey team.
This was the horrific embodiment of every parent’s worst nightmare and it really struck a chord deep within me that I still feel today. In the last year, I have continued to follow the stories of that night and the recovery of those who survived the crash, celebrating with them every small step along the way. This devastating event has been heartbreaking, but has also seen incredible moments of inspiration: Green Shirt Day was inspired by the decision by one player, Logan Boulet, that he wanted to register as an organ donor and in telling his parents that that was his choice should anything happen, helped save 6 lives even as his was lost.
Today our sticks might not be out, but our thoughts are with those 29 families forever impacted by those events and we continue to hope and pray for healing for them.
It feels a little strange to be putting fingers to the keyboard and sharing news with you all once again. Since the last time I wrote, we’ve celebrated Christmas, seen in the New Year, made some big decisions about future plans and the children have headed back to school. Mike kicked off the New Year in style – something I’ll share more about in my next post – as part of our family commitment for 2019.
To be honest I was glad to see the back of 2018, which had challenged us all from almost the beginning of the year, thanks to a nasty bout of Aussie ‘flu and…well…everything else that then followed on from that. Don’t get me wrong, it wasn’t all bad and there were also lots of highlights from our year to celebrate too. Unfortunately and almost unbelievably, 2018 finished in much the same way it started with the sad news that one of my Godmothers passed away just before Christmas and 2019 obviously didn’t get the memo that it needed to improve on our experiences and kicked off with further news of ill-health for both friends and family.
However, I’ve learned some important lessons in 2018 and will be taking them forward into our New Year. I have some wonderful freefrom finds to share amongst other news and I’ve no doubt there will be discoveries and adventures to write about as 2019 unfurls.
Here’s to a year of discovery and wonder for us all.
Unlike 19 years ago, there’s no snow to mark the day, just rain!
Love you always xxx
As Christmas fast approaches, we are all in that mode of frantically searching high and low for the perfect presents for our loved ones, or, at very least, the best price for whatever it is they want. My two are complete opposites when it comes to writing their Christmas wish lists: M knows exactly what he wants, be it the latest computer console and games (PS4 and Fortnite), musical instrument (electric bass guitar plus amp) or the slightly more random Tempur mattress (just don’t ask). Whilst these all come with a significant price tag and the ongoing conversation about having any one of them as a joint Christmas/birthday present, at least we know what to look for, although I’m not convinced he’d be that happy if all he got was a new mattress!
G, on the other hand, is a little more challenging. For the last couple of years, her list has been small and fairly inexpensive, which is great from a financial perspective, but far more challenging given she’ll be turning 15 just 2 weeks before Christmas and various family members want suggestions for both occasions. Having given the best idea to my Mum, I’m not quite sure what Santa will find to leave in her stocking this year, but hopefully with some hard work, heavy head-scratching and even brainstorming, we’ll get there in the end.
One of things that I love to support is local business whenever possible and I’m sure I’m not the only person to have spotted the memes on social media asking folks to consider buying from small, local businesses at this time of year to find something truly unique when it comes to gifts. We’ve been doing our bit to support our local business community for at least 10 years and love discovering new opportunities to do so along the way. We started with buying our weekly groceries from our local food co-op, who source local meats, dairy products, fruit and vegetables, baked goods and even ready meals and deliver to our door. They work very much in the same way as some of the bigger names in this market, but with all the added benefits of locally grown and produced seasonal products, thus reducing our carbon footprint as much as possible. Our nearest big city has an active fruit and vegetable market too and so they can also offer the more “exotic” items, such as bananas, which means we’re not heading to a big chain supermarket for just a handful of groceries too often.
Over the last 15 months, we’ve been supporting another local enterprise and one which is bringing great health benefits to us all. A local farm has converted one of its unused buildings into an environmentally friendly swimming pool, using water from its own bore-hole and heated by burning grass grown on the farm. It has a limited occupancy due its size and so rents the pool out on a private basis to small groups, who can book a regular time slot to spend there swimming. Every Tuesday evening at 8.30pm, our family can usually be found eagerly splashing into the pool, ready and raring to go for 30 minutes swimming time. It is conveniently close to us – just 10 minutes from home by car -, impeccably kept and we have developed a passing acquaintance with the 2 groups, 1 family and 1 a group of friends, who swim in the slots before us. We are allowed access to the spacious changing rooms for the 15 mins before and after our slot and despite my fears that M and G would dawdle, they both manage to get themselves showered, changed, dressed and ready to go by 9.15pm at the latest.
Even better, not only does this local farm provide this fantastic facility which has seen M’s confidence in his swimming skills soar whilst G, but we are also able to buy fresh eggs from the farm door on an honesty box system and their Christmas offerings include beef and turkey. I have long said that we have the best of all worlds where we live, being just 8 miles from the centre of a vibrant city with amazing theatres, music venues and sports stadiums, but having a cottage on the edge of farmland and being able to see fields and green spaces for miles. The children have grown up with a dairy farm just across the road and are accustomed to seeing cows or sheep in the field next door whilst they’re bouncing on the trampoline in our “paddock”. I love being able to access so many things so easily, even the coastline is just 20 minutes away, and truly appreciate and understand just how lucky we are. Supporting the small, local businesses that are trying to survive and thrive in challenging times is just one way we can help our local community continue to grow for years to come…and hopefully will help me source some great presents for G in time for December!
“…But it’s been
Fourteen years of silence
Fourteen years of pain
Fourteen years that are gone forever
And I’ll never have again…”
14 years since I last spoke to you; since I heard you laugh out loud at Terry Pratchett books; since you held my hand or shared a story. It’s been a tough year and we’re now missing not only you, but other much-loved family members to spend time with. 14 years too long xxx
May 20: E is for Educate
When M was finally diagnosed with EGID 5 years ago, it came at the end of a long, relentless and frustrating battle with the medical profession to have our concerns heard and acknowledged; and not simply be dismissed as over-protective parents; or worse. By the time the diagnosis was actually formalised, I had done a lot of my own reading around the subject and already knew as much about the condition as was readily available online. In the 5 years since that hospital appointment, we have found ourselves continually having to educate those around us, including the medics, who know little to nothing about what is becoming an increasingly controversial diagnosis, especially when it affects the lower GI tract as M’s does.
EoE, or Eosinophilic Oesophagitis, is becoming more widely recognised and the diagnostic criteria for this condition are well established, not least thanks to the continued research of Dr Marc Rothenberg and his team at Cincinnati Children’s Hospital. When it comes to the rest of the GI tract however, there opinion is very much divided. There are no clear guidelines as to how any of the other Eosinophilic disorders should be identified and diagnosed; and as the recent documentary about GOSH revealed, there is definitely no consensus on how they are best treated. One of the biggest problems facing children like M is the minimal investment into the research of gastrointestinal disorders and the fact that there is absolutely none into paediatric gastro research. With the credibility of EGID as a “real” chronic illness under debate, consultants all too often veer away from it as a possibility and either move towards a more psychological diagnosis or simply shrug their shoulders and leave these individuals to cope on their own, with little or no regular input.
Whether you want to lay the blame of M’s health issues at the feet of eosinophils, or mast cells, or indeed any other type of white blood cell that could be causing his body to attack itself and react to more foods that you can even begin to imagine, I don’t really mind. I’m not one to hang my hat on labels particularly, especially when that label has no meaning for the greater proportion of the people that M comes into contact with on a day-to-day basis; but I also know that being able to put a name to a problem lends a sense of genuineness to his symptoms as well. As a family we’re not able to walk away from the reality of living with this condition day in and day out because every week we experience the effect of it. I’ve said it before, I’ll say it now and I will no doubt say it many times in the future:
The symptoms that M suffers are very real and can be hugely distressing at times.
M is absolutely your average 12 year-old. He has attitude, he knows it all and he could argue that black is white with the best of them. He loves computer games, fantasy stories and endlessly watching Star Wars or Marvel films. He runs around and is noisy and can drive even a saint up the wall at times. He doesn’t look ill and I’d defy anyone who doesn’t know him to pick him out as the “sick kid” in the line-up. But that’s the face he presents to the outside world and reflects the attitude to his health that Mike and I have worked hard to engender within him.
What you don’t see is the worn out child who can’t move from his bed at times because of the pain and lethargy that accompany a flare-up. You don’t hear the quiet heart-to-hearts late at night, when he’s struggling with yet another reaction and doesn’t understand why it’s happening to him again. You don’t feel the despair that hits hard after another food causes soul-destroying disappointment because it’s clear that he just won’t be able to eat it without problem. And you can’t imagine the heartbreak of seeing the quiet acceptance that he won’t be able to go to a friend’s sleepover or away on school camp because of the possibility of suffering an embarrassing symptom that none of his friends really understand.
That is the truth of life with EGID and that’s the reason we will always endeavour to educate those who come into contact with M as well as the rest of the world in whatever way we can.
Victims must speak out to end workplace bullying in Wales. Those in positions to effect change must listen! I won't give up until anyone experiencing workplace bullying gets support & respect. My personal account as a victim of workplace bullying at mental health charity MIND
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