Category Archives: Chronic Illness

OTW Siblings #Take Two

This time last year, this happened:

and since the start of February, when the email finally arrived in my inbox confirming that G would once again be heading off to the depths of Dorset for the fabulous Over The Wall South Siblings Camp, the clock has been counting down. I’m surrounded by reminders of this amazing organisation wherever I look, from the screen saver on my phone to the calendar on my desk at work and it’s reflected every time I hear G or M, or sometimes both, bursting into a song from their time away at camp.

The next 5 days are going to be busy ones as I wash, iron, sort and pack G’s clothes for next week. We need to make sure she has enough for every eventuality – sunny days, wet weather, swimming, archery, arts and crafts, the talent show and the all important disco. Unlike last year, when she refused to even consider being part of the talent evening until she got there and then taught her team, the totally epic Purple Girls, a dance routine to Omi’s “Cheerleader” track; this year G is torn about which talent in particular she wants to perform. It could be a clarinet solo, which M would love her to do, or it might be a new dance routine, this time with costume. I’ve told her she really needs to have made her decision by the weekend, so I can ensure she’s got everything she wants with her when we set out on Monday. We’re so thrilled that G has the opportunity to benefit once again from the fantastic work done to support siblings of children with health challenges and I can’t wait to hear all about this year’s week away from home with OTW.

You may remember that since G’s adventures with Over The Wall last year, we have been raising awareness and funds for this incredible cause and I created this video to show our reasons for supporting them:

A fine Fish supper

With an unbeatable combination of good health all round, a new approach to food challenges and an accommodating restaurant, this year we had one of the best Mother’s Day lunches that we’ve enjoyed in a long time. Last year’s celebration fell flat, when my Mum was relegated to her sick-bed and left Mike, the children and me to savour yet another fantastic family meal at what has become one of our all-time favourites for allergy-friendly meals, Wagamama. However, a recent visit to our local Wagamama for M’s birthday tea meant we didn’t fancy a return visit quite so soon, after all it is possible to have too much of a good thing and as much as I fancied treating Mum to a late lunch at the amazing Cafe Nouveau, it was just too far to trek this weekend. Fortunately, the opportune coincidence of trialling prawns and our Sunday lunch plans meant we could visit an old haunt that received recent recognition as a gold award-winning venue at the 2016 FreeFrom Eating Out Awards.

Of course, we couldn’t just turn up on the day assuming that we’d be able to safely feed both children, so a preliminary phone call to not only book a table, but also run through all of our allergy requirements for the meal was an absolute necessity. We have been incredibly lucky in the past as we don’t always call ahead and have still found ourselves able to eat out as a family, but a special meal such as this one required a little forward planning. Our restaurant of choice was the marvellous Fishers Restaurant in Bristol and we had our fingers crossed that the inclusion of prawns for the day would make it possible for us all to enjoy a lunch at this great seafood restaurant. The staff were fantastic when Mike called and reassured him that not only could a safe prawn starter be prepared for M, but, as they were including chicken as a main course for Mothering Sunday, prepping chicken, rice and cucumber would be an absolute breeze too.

We had high hopes for our first 3-course meal in a long time, but the generous portion sizes left us all feeling full and satisfied before the dessert menu could even be properly considered. Fishers were able to adapt most of their menu options to be both gluten- and dairy-free to suit G and she was thrilled to be able to order calamari with a sweet chilli sauce, something that is an unexpected favourite with my oft-time picky oldest. She was also delighted by the gluten-free bread basket that she was able to enjoy whilst waiting for her starter to arrive and there was barely a crumb left by the time the calamari appeared. Mum settled on mussels, Mike picked smoked salmon and M and I enjoyed a similar starter of tempura tiger prawns, though mine came with a soy dipping sauce. I would love to be able to share with you the plate of prawns that M was presented with, but my joy at being able to watch my foodie savour every single mouthful meant that I forgot to pull out my phone until that plate was cleared.

G and M’s choices for their main course were a little more mainstream, with M being greeted with a fantastic-looking plate of plain rice, grilled chicken and cucumber batons, whilst G’s huge plate of gluten-free haddock and chips was enough to feed a small army. I was pleased to learn that they have a dedicated fryer to cook all of their gluten-free offerings and seemed to be very much attuned to the risks of cross-contamination for their freefrom guests. We had already confirmed that M could eat the lemon sorbet for pudding and were keen to see what was on offer for G. Sadly, this is when disappointment really hit as despite their brilliance in providing lots of gluten- and dairy-free alternatives for the savoury courses, dessert was a real let-down. The only choice readily available for G was sorbet, which she absolutely hates and when pushed, all the kitchen could offer was the apple crumble – without the crumble. We had heard that in the past, they had been able to go off-menu and cook a gluten- and dairy-free banana fritter, but we were told that they were no longer able to prepare that as an alternative. It was perhaps lucky that G and M were both full to the brim from the rest of the meal and didn’t really want to stick around any longer for pudding and so the rest of us willingly abandoned the sweet finale to our meal and instead travelled back to my Mum’s for a refreshing cup of tea.

Fishers was a great choice for lunch and we were impressed at their willingness to accommodate some tricky dietary requirements. However, the lack of an imaginative dessert menu for those with allergies was extremely disappointing and an area that could definitely do with some improvement to make it a truly excellent Freefrom restaurant.

On this Day

One of the things I enjoy about Facebook is the “On this Day” look back at the previous statuses you’ve posted on that day in years past, which is how I realised that today marks 4 years since the start of this blog. I’ve come,..we’ve come a long way since that very first post and have had more experiences, opportunities and adventures that I ever imagined possible. I’ve made some wonderful new friends and have been privileged to be able to lend support to those at the very start of their journey. We’ve met some amazing people and I can’t wait to discover what the year ahead brings.

Thank you for being a big part of my blog and continuing to support us every step of the way.

Happy 11th!

Somehow it doesn’t seem real that another year has passed and we’re marking a certain young gentleman’s 11th birthday. When my challenging pregnancy resulted in a premature birth, I had no idea that this Japanese proverb would become the very mantra of our lives as a family of 4. Today we’re celebrating 11 years filled with love, laughter and the continued determination by our youngest to get back up each and every time life knocks him down.

Happy 11th birthday M, may your day be filled with everything you want and so much more!

 

You know you’re an Allergy Mum when…

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I often flick through those “You know you’re a…” memes and have a quiet giggle to myself. I love the funny images that reflect the reality of a certain situation and I’m happy to admit that I do have a sense of humour about the jokes that poke gentle fun at the world’s response to the seemingly meteoric rise in food allergies in the past few years. In my opinion, and I willingly accept there will be many who don’t agree with me, life’s too short to not be able to laugh a little and find humour in what can be incredibly challenging situations. I know how difficult life with allergies can be and that ability to smile in the face of adversity is often what gets me through the hardest of times.

The truth is that when you’re an allergy parent you never really get the day off, which is why I found myself having to write this post in the midst of relaying tales of our recent trip to New York. It was a holiday to celebrate my milestone birthday and yet, just as I did when we had our short trip to Italy last year, I found myself snapping photos right, left and centre img_3430whenever I came across any food or drink that would be suitable for either of the children. The thing is that for once in my life I wasn’t actively looking for safe food options, but the discovery of that first gluten-free sandwich triggered a level of excitement that would be completely incomprehensible to anyone other than those walking the very same journey that we do. And no sooner had I discovered that first little gem, than I started looking everywhere to see just how well G and M would be catered for should we find ourselves in the Big Apple in the next few years.

Our trip to see the most well-known lady of the USA was also the site of this unexpected windfall in meeting dietary requirements. Having climbed our way to the top of the Statue of Liberty, we headed on to Ellis Island, where we decided to stop for lunch before exploring everything on offer in this former immigration inspection station. We had opted for a burger each as it was a cold and wintry February day and whilst Mike was placing our order at the counter, I took to the fridges to pick out our drinks. img_1449There, nestling amongst the other cold food options available, was this amazing gluten-free ham and swiss cheese roll and I was so impressed that I just had to take a snap. I’ve commented so many times on how difficult it can be to locate the gluten-free offering in cafes and coffee shops in the UK, so to discover this one so prominently on display and clearly labelled was just fantastic. Obviously, I really can’t comment on whether it tasted good or not, though I can assure you that the burgers Mike and I had were delicious, but to even have the option so readily available was a real breath of fresh air.

From that point on, my eagerness to see what other allergy-friendly offerings were available was back to its normal level and whilst I didn’t actively seek out restaurants that could serve freefrom alternatives, I kept my Allergy Mum eagle eyes on red alert to see what I could spot on our travels around this vibrant city. Our quick stop at Eataly to find a drink and small snack after a long afternoon at the 9/11 Memorial museum revealed some sheep’s milk and cheese for those looking for dairy-free alternatives, but disappointingly we couldn’t spot any of the gluten-free goodies we had unearthed on our Italian trip last year.

I didn’t spot many allergy-friendly menu items as we ate out in several of the many restaurants on offer, but we were delighted to spot a couple of gluten-free options at what was, without a doubt, my favourite restaurant of the trip. The fantastic Ellen’s Stardust Diner is a 50s themed diner that combines classic all-American dishes with amazing live entertainment. As you sit to enjoy your meal, you are serenaded by your talented waiter or waitress and their fellow servers. The staff members are all looking to break onto Broadway whilst working at the diner, which understands not only their need to supplement their income and take further performance classes, but also allows them to accept those last-minute audition opportunities whenever they appear. The food is good, but it’s the staff who really make this a dining experience like no other. Discovering a couple of gluten-free meals was a real treat, though I’m not sure they could really cater for the more complicated needs of a certain young member of our household.

However, our best finds came on a very wet, grey and miserable Monday afternoon as we trudged across the city towards the Intrepid Sea, Air & Space Museum. We needed to grab a light lunch before we reached our final destination and, as Mike had been hankering for a proper bagel New York-style, stopped at 2 unassuming locations to find what we had been looking for. As well as eventually finding a great deli serving some delicious lunch foods, we also discovered a veritable Aladdin’s cave of freefrom goodies. From the unbelievable number of allergy-friendly cereals, bread, frozen foods and milks on sale at the impressively named Food Emporium on West 43rd Street and the added delights of camel milk and coconut or almond milk ice cream at Sunac Natural Market on West 42nd Street, there was enough to satisfy the cravings of even the pickiest of allergy tourists. There may not have been a huge variety of options for M, but we did find some great and different types of rice for him and I know G would have been hard pressed to choose from the wide selection of gluten- and dairy-free foods that we found between these 2 great spots.

And so, in the tradition of all those Allergy parent memes that are out there….

You know you’re an Allergy Mum when your holiday photo album looks like this!

 

#40thcelebrations

It will come as no great surprise to many of you when I say that February 2017 has been all about the #40thcelebrations in our household. Last year, I marked the occasion of 30 years living side by side with T1D, so this year it only seemed fitting that I celebrated with equal clamour that next big milestone in my life: hitting the big 4-0. c5ao3diwmaatk4uI am a huge fan of celebrating birthdays in style and you will often find the birthday cards in our house hanging around for a good 2 or 3 weeks past the notable date itself. Unlike my husband, and possibly much to his disappointment, I don’t likeabsolutely hate…’m not so keen on surprises and would much prefer being involved in the planning, to a greater or lesser extent, of any significant occasion. The plans for celebrating my 40th this year were no different.

When I turned 30, there were 2 destinations I wanted to visit, Las Vegas and New York. We discussed at length where we would go and settled on Las Vegas, with the clear understanding that only New York would do when it came to turning 40. The last 12 months or so have been filled with booking, researching and planning the finer details of our perfect trip to this iconic city and since just before Christmas, the excitement has gradually been building. Thanks to my Mum, we were able to spend an entire week in the USA and even managed to tag on a couple of extra days at the beginning to be part of the judging panels for this year’s Free From Food Awards. Her generosity meant we could take full advantage of travelling without children and fitted the trip in before we hit the price hikes of February half-term.

c3p22qjweaihqonWe decided to travel with Virgin Atlantic, from whom we have had great customer service in the past and again were not disappointed, especially when they marked my birthday with a couple of complimentary glasses of bubbles and bars of chocolate on the flights. We also chose to book our hotel and city passes as part of a Virgin holidays package and settled on the Hotel Beacon for our stay. Located on the Upper West Side of NYC and within 5 minutes walking distance of Central Park, the Hotel Beacon was a fantastic choice and we loved everything about it. As well as being able to walk to Central Park, we were also able to walk the couple of blocks to the 72nd subway station and were surrounded by a great selection of cafes and restaurants to try. What we particularly liked was the fact that the rooms have fully equipped kitchenettes, which may have only had a limited use for our stay this time, but would be perfect for when travelling with anyone with food allergies who might want to prepare safe food themselves.

img_34951Our trip was understandably dominated by our sightseeing plans and we did pretty much everything we wanted with a few added extras thrown in for good measure along the way. I’d be hard-pushed to narrow down my favourite part as everything we did was gloriously marvellous in their own unique ways. Mike loved seeing the architecture of the city, from the splendour of the Empire State Building and the Chrysler Building, to the stunning beauty of the interior of Grand Central Station and the sheer engineering magnitude of the Statue of Liberty. One of Mike’s favourite parts was, without doubt, our Sunday spent on Ellis Island, where he was able to track down the immigration paperwork for when his mother and her family moved from Jamaica to Canada by way of NYC in the late 1940s.
img_35731I loved our wander through Central Park, both in the blazing sunshine and then again in the snow as we made our way to the Frick Collection, a fabulous small museum containing some leading Old Master paintings and sculptures. Around every corner we stumbled across yet another masterpiece and I am so grateful to my colleague who recommended this as an ideal way to spend a couple of hours seeing these well-known pieces of art. Thanks to our open bus city tour, we also discovered, to my absolute delight, where we could see the original Winnie-the-Pooh and friends given to Christopher Robin Milne before they became the inspiration for that much-loved children’s classic, a visit that took up hardly any of our time and yet was a worthwhile stop for this literature fan. In stark contrast, we spent a long afternoon at the 9/11 Memorial, a hauntingly heart-breaking and harrowing museum to visit, which did an amazing job in walking the visitor through both the timeline as it unfurled on the day and the stories of great heroism and unbelievable tragedy.

Our week-long stay was a truly fantastic way to celebrate my 40th year and there is so much more that I’ll be sharing over the next few blog posts.

Impractical Jokers – Birmingham 2017

The last month or so has been filled with an unusual number of opportunities for Mike and me to take a little time off from our jam-packed lives at home and have some much-needed time to relax, rejuvenate and re-find ourselves as a couple. We’ve been fortunate that, just as she did last June when we enjoyed my surprise holiday win to Italy, my Mum was willing to take charge of G and M for the duration and we’ve been celebrating our 40th birthdays in style. Our first treat involved a road trip to Birmingham, an overnight stay near the Barclaycard Arena (previously the National Indoor Arena) and an evening spent laughing, courtesy of the tickets I had bought for Mike as part of his 40th birthday present.

img_13471Just over a year ago we discovered the American hit comedy show, Impractical Jokers and have spent many hours curled up in front of the TV, often with the children added to the mix too, giggling and guffawing at the escapades we’ve watched unfold in front of our eyes. For those of you who have never heard of the Impractical Jokers, this hidden camera show follows 4 childhood friends from Staten Island, Sal, Joe, Murr and Q, as they play a series of practical jokes on each other and the unsuspecting general public. In a hyped-up version of “Truth or Dare”, they challenge each other to complete a string of ridiculous tasks, knowing that failure to complete or achieve the goal will result in the biggest loser of that episode having to undergo a punishment at the hands of their friends.

The Jokers usually do not know the details of the pranks until the moment they have to do them and are often pushed to say and do things that are well beyond most people’s normal comfort zones. From saying outrageous comments when serving customers at one of the many stores, fast food joints or cafes featured from New York, to having to convince strangers that they have met before in the most unbelievable set of circumstances, the pranks nearly always have us all laughing out loud. I’d be hard-pushed to say which part of each show we most enjoy, but the final punishments are almost always as funny as the pranks themselves and go from the sublime to the ridiculous. img_13531In many ways, it’s seeing the response that adds to the humour of the situation. My Mum freely admits that she can’t see what makes us laugh so much and perhaps it’s true you require a certain quirky sense of humour to enjoy the half-hour episodes.

Having missed out on tickets for their first UK tour in February 2016, I was determined to get some for January 2017 and was delighted when I managed to secure 2 great seats at the Birmingham Barclaycard Arena. It took some strategic planning with my Mum – well, I had to check she’d be in the country to look after G and M for the night! – but we got there in the end and I even managed to keep it a secret until the big reveal on Mike’s birthday in October. M was not so impressed with our planned night out, but Mike was as thrilled as I was and the time just flew past until we found ourselves taking an afternoon off from work and bombing down the motorway towards our final destination. We found a great place to stay – City Nites Serviced Apartments – within walking distance of the Arena that included a secure location to park the car and enjoyed a delicious dinner at Thai Edge before the show itself started.

We were hoping for a great night out and weren’t disappointed. The Jokers, also known as The Tenderloins comedy troupe, have been performing stand-up for years and their show was filled with a skillful mix of scripted jokes, some improv and the inevitable reveal of previously unseen clips from their successful TV show. I’ll be honest, a few long days and nights on UK tour had obviously taken their toll on all their voices and a heavy drinking session meant that one member of the group in particular was not as sharp as he usually is on-screen, but my favourites, Sal and Joe, were in fantastic form and made the night for me. Mike loved being at yet another live comedy show, having already enjoyed seeing Josh Widdicombe and Dave Gorman for previous birthday treats. It was a brilliant overnight break from the children and one that we both needed after the medical stresses that had stalked us at the end of last year.c2dvr6txeaan_op

Young Carers Awareness Day 2017

Today is Young Carers Awareness Day, a national day for the recognition of the estimated 700,000 Young Carers in the UK. I’ve written before about Young Carers and how G was finally recognised as one last year. She now regularly attends our local carers support group and has developed friendships with a couple of other girls who are in her year at her secondary school. Young Carers can care in a number of ways, the most obvious being giving physical help to family members, but, as we discovered with G, the emotional and psychological support given is just as important to recognise and can take just as big a toll on the young person. Organisations such as the Carers Trust, Barnados and Over The Wall all work to ensure that these young people are given the same opportunities as their friends and have time to be a child. This support is vital to ensure that G, her friends and others like them have as happy, healthy and balanced a childhood as they can.

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Beating the Blues

Today is Blue Monday, the day predicted to be the gloomiest day of the year due to bad weather, the stark reality of our Christmas over-indulgence now affecting our dwindling bank accounts, the post-Christmas buzz that has completely disappeared from the horizon and our well-meant resolutions that are proving far harder to keep than we ever imagined. There are some New Year resolutions that you know will be difficult to keep beyond the first few days – abstinence springs instantly to mind – and then there are those that will never, could never be a challenge, but rather are an absolute pleasure to complete. Last year gave our family 2 amazing opportunities, experiences that were so life-changing, so extraordinary for both children and so liberating for us all that I knew that one resolution that I would not fail to meet was to write a post to not only recapture what are amongst my most favourite memories of 2016, but to also encourage others to get involved with what is a truly inspirational organisation.

9a78a65173e2885ea3a8c8b9d3ccd1acThanks to the amazing charity, Over The Wall, last year both G and M were able to escape from the reality that is their life at home coping with chronic illness and find a world where nothing could hold them back or stop them from achieving what might have previously seemed to have been impossible. G discovered a group of friends who could understand completely what life can be like when you have a sibling with serious health issues, but who got to know the unique, kind-hearted, gentle-spirited and passionate girl she can be in her own right and not simply as “M’s big sister“. Her confidence grew as she responded to the love, focus and encouragement that was given to her throughout her week away and she found a new and irreplaceable identity as a valuable member of last year’s Purple Girls at the South Siblings camp. Likewise, just a few months later, M was able to experience, for the first time ever, a week away from family, where he got to be as carefree a child as his school-mates are and could try out a whole host of new activities, confident and safe in the knowledge that his medical needs were being well-managed by the volunteer team surrounding him and he just needed to concentrate on having fun. Their time away from home taught them both that there is more to them than EGID and food allergies: Over The Wall truly gave my children wings to help them soar.

So, why write once again about the extraordinary adventure that is Over The Wall? Well, with a New Year comes new opportunities and you don’t have to have a child living with a chronic illness to be able to become involved with this organisation:

  • Application forms are currently open for places on the 2017 camps and be it the Siblings, Health Challenges or Family camp that meets your needs, now is the time to register your interest and find out if you can secure a place. Both children are glad to know that their forms have been completed and sent off, and it’s just a case of waiting to see if they’re back to the camp bubble this year
  • These camps depend heavily on the huge amount of time given to them by their team of dedicated volunteers. If you’re interested in volunteering your time and helping make a difference to young people impacted by health problems, volunteer applications are also now open. The medical team who willingly give their time are unquestionably invaluable, but whatever your skills, know that your presence will undoubtedly make a difference to the children that are there
  • OTW offer these camps free to those families who attend and to be able to keep doing what they do and successfully reach out to even more young people, they need your help in raising funds. As a family we decided to focus our fundraising efforts last year on OTW and will continue to do so for 2017. Thank you so much if you helped us make a difference in 2016. Cake sales, sky-diving, shaving your head or running a marathon – whatever your interest, please consider supporting this charity by raising sponsorship or making a donation

And just in case you needed a reason to support and spread the news about Over The Wall, here’s a few photos that capture the magic that transformed the lives of G and M in unimaginable ways in 2016.

New Year Resolutions

Two weeks into 2017 and, for some, their good intentions may already be beginning to waver as the grey skies, endless rain and post-Christmas blues sap away any enthusiasm that might have existed at that moment of pressure when they were asked by a well-meaning friend or work colleague what their New Year resolutions were. Love them or hate them,newyearsresolution you’ve probably got an opinion of them, even if it’s just that they’re not worth doing as only the very few manage to keep to their chosen goal.

Last year, Mike and I both had resolutions, though of very differing types and whilst I was fully aware of what Mike was planning to do, I set myself a goal that I chose not to share with anyone. Mike’s resolution for 2016 was to extend his previous challenges of giving up alcohol during Lent by trying to be dry every other weekend throughout the year. He sensibly took the approach that there would undoubtedly be occasions when he would want to drink 2 weekends in a row, so was flexible in managing it, sometimes choosing to abstain for 2 weeks before drinking for 2 weeks. It seemed to work well and he was delighted that he reached the end of the year having managed to stick to his resolution for the full 52 weeks.

In comparison, mine was a blog-based goal and one that I was secretly hoping to achieve and would monitor throughout the months to see if I was still on track to succeed. The one thing I love about the blogging platform that I use and something that really appeals to my accountant’s heart, is the statistics I can access and drill into on a regular basis. As well as showing me my daily hit rates and what posts are proving particularly popular, I can also compare and contrast my monthly statistics and averages since I first started writing nearly 4 years ago.  In my first 10 months, I achieved nearly 6,000 views, whilst the following 2 years saw me hitting the heady heights of over 11,000 blog post reads over the year. Last January I decided I wanted to break the 12,000 mark and set myself a target of 1,000 hits a month to reach it. Some months it was close with the lowest read rate being 1,030 in March, whereas other months were hugely successful including a 2016 high of 2,396 in August. My year-end goal of 12,000 was well and truly met and I can confirm Successthat I actually achieved over 16,000 hits in the year, something I never really thought possible when I started blogging in 2013. I haven’t set myself a NY resolution for years, so it was a fantastic feeling when I finally passed that last 1,000 mark in December and could quietly pat myself on the back.

This year our household has taken something of a mixed approach to the whole matter of resolutions, being firmly split between 2 distinct camps: those who do (Mike and G) and those who don’t (M and me). I’m not going to publicly share the resolution decisions of my loved ones at this stage in the game, though I promise to let you all know if they manage to achieve what they’re planning to do as and when they reach their end goal. As for me, well it’s not strictly true that I haven’t set myself a resolution, but rather a year’s goal that is to successfully juggle the new pressures of blog writing, awards judging, T1D managing, parenting and full-time working so that I can do enough in each area and hopefully fail at none. My focus is having to be sharpened at the moment to ensure that none of the balls is dropped and I guess only time will tell how successful I can actually be. Of course, I will undoubtedly share my progress on my blog.

How about you? Have you started 2017 with a resolution or goal in place? I hope that if you have you’ve managed to keep it so far and that you have continued success with it!

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