Tag Archives: parenting

“Run, run as fast as you can…”

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“…you can’t catch me, I’m the gingerbread man!”

To be perfectly honest, the last couple of months have been challenging ones. When we made the decision last year to move M to the elemental diet, we did so hoping that it would be the answer we were looking for and that he would finally find some relief from the years of chronic pain and constant bowel problems he’d barely been surviving. The great news is that his symptoms improved dramatically and for the first time in a long-time, M felt healthier and happier than ever before. However, despite the best hopes of GOSH that his NG-tube would only be needed for 2 or 3 months, Mike and I held the opinion that it would more realistically be in place for at least a year, if not longer, and we are rapidly moving closer to that 12-month mark. Of course, what none of us had anticipated was the struggle we would have in reintroducing foods back into M’s diet and over recent weeks, he has found the constant disappointment of failed food trials and the frustration of not being able to eat the same as everyone else almost unbearable to live with. With the agreement of our amazingly supportive dietician, we decided to take an extended break from the challenges, allowing M some much-needed time to come to terms with the realities of life right now.

shutterstock_190648280Having had that much-needed rest, M started to lose that haunted look that had been plaguing him for a few weeks and we finally seemed to have turned the corner and be back on track. We agreed on a new short list of foods to challenge in the run up to Christmas and had finally restarted where we had left off, more or less. However, last weekend, with another 3 unsuccessful attempts at reintroductions to chalk up to experience, tensions started to build and emotions threatened to overwhelm the tenuous calm that had just begun to settle. The final straw broke when G asked Mike and me to taste and review her cupcakes for her Food and Textiles homework. With hot, angry tears cascading down his cheeks, M crawled on to my lap to fitfully confide that it “just wasn’t fair” that everyone else could eat cakes when he couldn’t. Gently stroking his back, I offered to whip up a batch of one of the few sweet treat recipes I’ve managed to adapt for him in the last 12 months: Rice krispie treats? Cupcakes? Scones? Sugar cookies? Nothing seemed to quite hit the necessary mark, so I put my thinking cap on, did a little research and came up with the perfect pre-Christmas treat – Gingerbread!

Thanks to a few sneaky “mini” challenges, we have been able to add some extra flavourings to M’s diet and the most recent success was the addition of ginger to the humble pear crumble, so gingerbread seemed to be the logical next step. I started pulling the ingredients from the cupboards and, 20151121_162110as I weighed and measured out everything I needed, M’s interest was piqued and he pulled up the step-stool to stand by my side and help out. He rolled up his sleeves, washed and then floured his hands and, having selected an interesting array of cookie cutters, brandished my trusty rolling-pin to roll out the gingerbread dough on my pastry board. He chose to use the Christmas cutters as well as the odd one or two Mr Men ones, which have survived from my childhood and spent hours planning out to most effectively cut the shapes from the dough in front of him. We ended up with an impressive batch and I am heartily assured by my trustworthy taste-testers that they more than fit the brief and hit the mark!

Early arrivals

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efcniToday, November 17th, is World Prematurity Day. A day that acknowledges the early arrival of 15 million babies across the world every year, a statistic that increases annually. Pre-term births are defined as “babies born alive before 37 weeks of pregnancy are completed”, but…

What do you think of when you think of a premature baby?

You might recall images of micro-preemies, those babies born so early and so small that they can be cradled in the palm of their parents’ hands. You might think of babies covered with tubes and wires, enclosed in incubators or even tucked into supermarket sandwich bags to help keep them warm enough to survive. You might know of the risks associated with an early arrival and how hard the doctors, nurses and parents fight, with every inch of their being, to get those babies through another day and another long night. You may even have survived the weeks of hoping to get “just one more” week through your pregnancy, knowing that every single hour counts.

The thing is that preemie babies come in all shapes and sizes; the reasons for their early arrival are many and varied; and every family has a similar, but also hugely different story to tell. Each parent and child has their own individual challenges to face and yet premature birth is a common bond that links them all. Let me introduce you to 3 special preemies, each with a unique set of circumstances and a shared experience marking their arrival  :

20131118_191134Of course, you’ve already met the first one: G just crept into the premature category, arriving at 36+6 nearly 12 years ago and weighing an extremely respectable 8lbs. Her delivery was the result of fears about my T1D and the signs that my placenta was beginning to fail, so the doctors made the decision to deliver her to ensure she had the best start in life. Even though she had an initial problem with plummeting blood sugars, G’s stay in SCBU (Special Care Baby Unit) was short at just 3 days and thanks to the wonderfully supportive nurses on the High Dependency ward who looked after us both, Mike, G and I were able to come home a week after she was born and spent our first family Christmas together at home.

M was even more impatient to arrive than his big sister, although his birth weight of 5lbs 12.5oz at 33+1 gestation was equally impressive. M spent his first few days on NICU (Neonatal Intensive Care Unit), although there were times we felt something of a fraud, especially compared to the tiny 26-weeker 2 cribs along, who had been born at exactly 5lbs less than him. We had been warned from the moment I was first admitted at 26 weeks pregnant that once he arrived, M would almost inevitably need to stay in hospital until he reached his due date. It is of great credit to the dedicated doctors and nurses who looked after him that we were, in fact, able to bring him home after just 3.5 weeks and in perfect time for Mothers’ Day.

10329684_10152507367497848_7913075952615166607_oAnd this tiny, but beautiful fighter is B, the second son of our close friends and M’s godparents, L and C. Due to fetal distress resulting from pre-eclampsia, B was born at 27+2, weighing just 1lb 9oz and has had a very different battle so far than either G or M. He had suspected NEC (Necrotising Enterocolitis) in hospital and for a week things were very touch and go. Despite this rocky beginning, B is an incredible battler and even though he came home on oxygen after a long 98 days in hospital, 5 weeks later he had been successfully weaned off that too. 18 months on, he is a happy, loving little boy, who may be on the small side for his age, but is otherwise doing well and I know that his parents, just like us, will be forever grateful to those medics who have helped B fight and win.

image_for_happy_world_prematurity_day_5715493946These 3 precious bundles may not have had the easiest start in their lives, but we are lucky that they have each survived and become an irreplaceable part of our families. With a national health service that is in crisis, the neonatal units where G, M and B and thousands like them are cared for on a daily basis are seriously overstretched and understaffed. These children need an incredible level of specialist care to help them make it through those critical first few days and weeks of life and the doctors and nurses who give it are simply amazing as they offer not just medical care to the babies, but emotional support to the whole family. That is a gift that cannot be easily replaced and we know that we were extremely fortunate to be able to receive it.

Children In Need 2015

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Along with the rain, wind and grey skies, November also brings with it the star-studded evening of light entertainment that is BBC’s Children in Need. Last year they launched the theme of “Be a Hero” for the event and my pair decided to dress as their personal heroes of Princess Leia and M’s gastro consultant at GOSH. This year, the dressing up part was a little easier to achieve – G headed off to school in her own wardrobe selection and M wore his “Super Tubie” top as we really couldn’t think of any better superhero for him to represent. You might think that this meant I escaped lightly for this year’s celebrations, but for those of you who know me, or follow me on FB, you will be well aware that my youngest actually had very different ideas about how we should spend the night before the big day itself, and what a long night it turned out to be!

His school decided to hold a “Great Children-in-Need Bake-off” competition as part of their fundraising efforts and naturally M was keen to take part. His first step was to decide what he wanted his cake to look like and eventually settled on cupcakes rather than one big cake as they would be easier to sell as part of the school cake sale after the competition was judged. Instead of decorating a dozen individual cupcakes, 20151111_195743M wanted to use them to create Pudsey Bear’s face as best he could. Design done, Wednesday evening saw M whipping up the cake batter with a little supervision from me and the resulting 24 perfectly baked M-friendly cupcakes were left to cool overnight before he tackled the big job of the icing.

One evening to ice to perfection might sound like more than enough time, but when you take into consideration the after-school archery club requiring late pick-up, the long-awaited ‘flu vaccination appointment, the unavoidable homework and the much-needed dinner, you’ll begin to understand why we couldn’t get started until close to 6.30pm. Of course, having baked cakes that he could eat, M was keen to ice with safe icing too, so my first job was to help him make enough coconut oil icing, tinted a rather fetching Pudsey Bear yellow, to cover them all. 20151112_192831We had already made a simple cardboard frame in the shape of Pudsey’s head to hold the cupcakes securely and,having fitted 10 cupcakes neatly into place, M got started on the icing.

It was his first attempt with an icing bag and I have to say I was impressed. M handled the bag and nozzle like a pro and did what I’d consider to be a really good job for his very first go. Watching him I could see how much his motor skills have improved since he was first diagnosed with dyspraxia and he actually made a relatively fiddly task seem remarkably easy. Yellow icing piped, next came the task of rolling out and shaping the other colours to make Pudsey’s spotted bandage and facial features. He tweaked and adjusted until he was finally satisfied with the end result and I have to say it was a job well done. Whilst he couldn’t quite eat all of the cakes, he could eat those covered just with the yellow icing – the ears! – and for the first time in a long time, M knew he’d be able to buy a cake at the school cake sale!

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Now, for most people that would be a great place to stop; but oh no, not in our slightly mad household. Whilst we’d been browsing cookery books and the internet for ideas for his final cake design, M had spotted some Pudsey Bear cake pops and was keen to see if we could make some of those in a M-friendly version too. Cue some hurried reading on my part accompanied by much scratching of my head as I tried to work out a recipe that didn’t involve chocolate in some shape or form. I couldn’t find a single chocolate-free cake pop recipe, so did the next best thing and came up with my own.

20151112_204555I crumbled 8 cupcakes into a bowl and was delighted to see that the grated apple and pear in the cake mix gave enough moisture to form balls. M cut up some drinking straws as I carefully moulded our cake balls and stuck them to the sticks to create the lollipop shape. My full recipe is here, but let’s just say it took multiple moves between table and freezer as well as some much-needed help from all family members on hand to achieve the final look. The ones M decorated for school were not safe for him to try as we ended up using fondant icing, but we did try a few attempts with the coconut oil icing and I reckon with a few more tries, we might have those sussed.

20151113_082414It turned out to be a later night than planned, but M ended up with 2 entries to the school competition he could be proud of and was delighted that nearly all of his cakes sold at the fundraiser on Friday.

Station X

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date (2)It might have been a damp, chilly October morning when we left home, but we didn’t let the weather deter us from completing our “top-secret” mission for the end of half-term – a visit to Station X, otherwise known as Bletchley Park. The purpose of our weekend away was actually to visit one of my Godmothers in nearby Milton Keynes, but the opportunity to take the children to see the home of unparalleled code-breaking during WWII was too good to miss. It was something of a last-minute plan, but I was confident that M would be fascinated by the history of code-breakers and spies that is so intricately woven into this beautiful Manor House and, what’s more, 20151031_115918it fitted wonderfully well with some of the English home-work G had been set over half-term.

From the moment we drove in through the front gates, the children’s interest was piqued as we were questioned at the gate as to the reason for our visit and directed to the nearby car park. Members of staff were on hand to make sure we headed to the entrance and didn’t wander into any areas that are still in use today and not accessible to the general public. We started by picking up our multimedia tour packs, before heading into the grounds of Bletchley Park itself. M was keen to follow the guide exactly and so we started by the lake whilst listening to an introduction to all there was to see there, which believe me, is a lot. Once we had circumnavigated the lake, we were then taken around the rest of the site: starting at the Manor House, around to the garages and cottages, via the memorial to the Polish men and women involved in code-breaking during WWII and on to the restored Huts; 20151031_130649all before ending up at the Block B Museum.

The Multimedia guide was absolutely brilliant and I’m really glad we stopped to pick them up despite G’s initial reluctance. Mike, M and I all chose the adult version, whilst G opted for the family friendly one. The map showed the key places for starting the audio recordings and you could then choose how many additional subject areas you wanted to listen to on a variety of different topics. The screens were all interactive and M had great fun “wiping off” the current images to reveal how each location would have looked during the 1940s. G had the added bonus of interactive puzzles to complete and loved working out how to break each code. The guides were included in the price of the entrance ticket and whilst they weren’t integral to our visit, they certainly revealed more of the story than was on display,

I would be hard-pressed to state which was my favourite part or indeed choose which I think the children enjoyed the most. There was just so much to see, so much to read and almost too much to absorb. From the history of Bletchley Park which led to its use during WWII, to the interactive displays of the Bombe machines in Hut 11, the Enigma machines on display in Block B and the children’s corner with puzzles and dressing up supplies, as well as an extensive area showing some of the props and costumes used to20151031_125114 film last year’s blockbuster, “The Imitation Game“, there really was something for everyone. Sadly our few hours there simply weren’t long enough and we didn’t manage to explore either the National Radio Centre or the National Museum of Computing and its rebuild of Colossus, both located at the same site. No need to worry however, as it simply means that we will have to try to squeeze a revisit in and, as our entrance tickets give us admission for a full year, I’m sure we’ll manage it one way or another

That’s what friends are for

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Over the last couple of months, I’ve been focusing my blog on new recipes, holiday travels and weekend adventures, but of course, in the background of all that, there have been the ongoing food challenges, unavoidable medical dramas and inevitable hospital appointments that are very much part of our everyday life. Those are the bits that take a little longer to process as we adjust our expectations and plans for the coming months, and understandably are not always the easiest parts to share. However, whilst we’re picking our way through the discussions of our latest appointment, I wanted to share this story with you all.

You see, our most recent GOSH appointment was declared “…the best hospital appointment EVER!..” by M for reasons that had absolutely nothing to do with what his consultant or dietician said, discussed or did; and absolutely indexeverything to do with some amazing friends he has met and made since our journey to a diagnosis started over 4 years ago.

We arrived an hour early for our clinic appointment, something that is nothing short of a miracle given the comedy of errors that unfolded as Mike attempted to connect with M and me mid-route as we headed into London by train. Let’s just say that realising your wife and child are not on the train you’ve just boarded and which is now leaving the station, but instead the one that’s just pulling into that self-same station behind you, probably doesn’t rank very highly in Mike’s top ten of successful travel arrangements, but we did eventually meet up and safely got to the hospital with plenty of time to spare! I knew that good friend and fellow EGID Mum, R was also there with her son, A, who has become great buddies with M since we were in GOSH last Christmas and had already tentatively arranged an attempt to meet up if at all possible. As we trundled through to the waiting room, I spotted R across the room and to my delight saw she was chatting with another old FABED friend of M’s and his Mum, L.

These 3 boys were thrilled to all be at clinic together and spent the next couple of hours sharing their electronic devices, playing games and laughing. Being in clinic with 2 good friends helped occupy M’s time and the lengthy wait just flew past as they entertained each other and we parents took the opportunity to do some catching up of our own. All 3 are on extremely restricted diets and represent beautifully the 3 different faces of elemental feeds: A who bravely drinks his daily; M with his NG-tube; and R with his PEG. It was wonderful to see, especially as all 3 were looking fit, well and really no different to other boys of their age. They looked as 3 friends should do: relaxed, happy and comfortable in each other’s presence.developing-friendship-machines-working-word-building-up-concept-construction-black-alphabetic-letters-forming-isolated-31326540

I’ll be honest, as amazing as it was to watch these 3 lads pick up where they had left off, after however long it has been, without missing a beat, it was also heart-wrenching to see them spending time together in the hospital waiting room, knowing that the reason they were there was a chronic illness that has had a long-reaching impact on each of their young lives. But; in that most perfect of moments for them all as they sat united on the waiting room floor, we also realised just how blessed we are to know such amazing people and how important it is for M to believe that he’s not on his own.

Shoe Box Appeal 2015

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I feel a little as if I’m on “Appeals” overload at the moment, but as both these causes are extremely worthwhile in my opinion, and with deadlines fast looming, I just had to squeeze them both into the same week. The first was the Teal Pumpkin Project that I mentioned in my last blog post and it’s not too late to sign your household up and help provide some peace of mind for parents of allergy children. You can pledge your support through this link and make a big difference with just a few simple steps. If Halloween isn’t your thing, once it is done and dusted this weekend and the pumpkin spice lattes disappear from the coffee shops, your attention will no doubt start to turn towards the final big celebration of the year, Christmas. imagesNow, for various reasons including the need to meet a last posting date of October 13th for Canadian surface mail, I am rather spectacularly “on top” of the Christmas present buying this year and must confess to feeling unashamedly pleased with myself! Of course, this level of organisation almost definitely won’t result in a calm approach to December as there are still gifts to buy for the 3 most important people in my life and both G’s 12th birthday and our 16th wedding anniversary need to be celebrated before the big day itself.

The one advantage of being so prepared is that I have been able to focus my attention on preparing some Christmas shoe-boxes for this year’s Blythswood Care Shoe Box Appeal. Our church has been supporting this organisation for a number of years and in years past, G has also helped support this cause through her school. Last year was our first to actually prepare 2 shoe-boxes at home and this year G asked if we could fill 4 – 2 from her and 2 from M – a request I was more than happy to meet. As with the Teal Pumpkin Project, once again the idea is a simple one and will make a huge difference to those who receive one of these boxes this Christmas.213375_21bce6818a3b4276b1fd5c518dcd2914.jpg_srb_p_316_335_75_22_0.50_1.20_0.00_jpg_srb

What is the Shoe Box Appeal?

Blythswood Care, as well as many other organisations, ask for donations of filled shoe-boxes, which are sent to individuals and families in need in some of the most destitute countries of the world. They are often the only gift these people will receive this Christmas and bring some seasonal joy in otherwise difficult and dismal situations.

What do you need?Checklist_Layout 1

  • an empty shoe-box
  • some Christmas wrapping paper
  • same basic toiletries: soap, toothbrush and toothpaste are the bare minimum
  • a pair of winter gloves and either a hat or a scarf, or both
  • sweets
  • a selection of small toys, make-up, stationery and other bits and pieces to make your box an extra-special present to receive

The above items all need to be new and there are clear guidelines to follow in terms of purchasing sweets and toiletries/cosmetics for them. You can choose who you want to fill the shoe-box for and just need to clearly indicate the intended gender and age of the recipient.

What sorts of things should I add?

The choice of how to fill them is yours and really yours alone. As long as each box contains the basic toiletries and winter clothing requested, everything else is at your discretion. The nice thing is that you can spend as much or as little as you want and can afford. G, M and I visited our local pound shop and I encouraged them to pick out items that they thought their target audience (2 boys and 2 girls of approximately their age and younger) would enjoy opening on Christmas morning. Between them we ended up with bags of sweets, pencils, stickers, toy cars, Lego, Where’s Wally books, small puzzles and toy ponies.

Where do these boxes go?

In the case of Blythswood Care, the shoe-boxes are delivered to mainly Eastern European countries such as Albania, Romania, Bulgaria and Hungary. They are then distributed locally to low-income families or families identified as having a particular need, who are unable to buy gifts themselves and are otherwise unlikely to be able to celebrate the Christmas season.

20151017_185003Why fill them?

In our family, the children have chosen to fill these boxes because they both know how lucky they are to be able to count on a pile of presents to open on Christmas morning. Throughout the year, G has been sorting through bits and pieces in her bedroom and has kept asking to put things to one side to add to our boxes. We’ve taught them that these gifts are really something small that they can easily do and which will truly have a big and lasting impact.

How long do I have to fill my box?

The deadline is as fast approaching as Christmas itself, with many locations collecting boxes by November 6th 2015. If you want details of where to drop off your filled boxes, you can look at the collections schedule here or contact them directly on 01349 830777.

Are there other options?

Of course, there are a number of other charities and organisations out there that do similar work in a whole host of countries and for different individuals during the Christmas period and you might wish to support one of those instead:

Finally, if you want to see more about the difference these boxes make, please watch Blythswood Care’s video:

 

Teal Pumpkin Project™ 2015

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My first real experience of Halloween came during my time as a student at Ottawa University back in the 1990s, when my Canadian friends took pity on a poor uninitiated Brit and introduced me to what is truly an unmissable event on the North American calendar. Every shop has a vast array of costumes to choose from, porches are adorned with carved pumpkins galore, houses are bedecked in lights and decorations to rival those put up for Christmas and entire neighbourhoods take to the streets on the night itself, pillowcases in hand, to offer the traditional “..trick-or-treat..” to the eager participants. Likewise, G and M have fond memories of their own P1000386Canadian Halloween experiences with cousins and friends and their outfits are still hanging up in M’s costume wardrobe as a permanent memento. It was, understandably, a big part of Mike’s childhood, but is not an occasion I ever remember marking in my own upbringing and at home, here in the UK, I can’t quite reconcile myself to the idea of sending my children out in their ghoulish fancy dress to knock on random houses in our village to ask for treats, when, for the other 364 days of the year, I’m drilling into them the mantra to not accept sweets from strangers. Whilst we might not be avid Halloween fans in our household, I know it is a custom that is becoming more and more popular around the country.

Of course, for children with food allergies, trick-or-treating takes on a whole new meaning as frighteningly they risk their health by collecting sweets that could unwittingly trigger an allergic reaction. This year in particular, I am glad that my children have no expectations of going out on Halloween as with M’s slim pickings when it comes to safe foods, I would have to take away every single sweet he was given and swap it for a M-friendly alternative; and would have to do exactly the same to protect G from her allergies too. However, thanks to Food Allergy Research & Education (FARE) in the USA, a relatively new campaign helps raise awareness of food allergies during Halloween season, seeks to ease parental concerns, promotes inclusion of all trick-or-treaters and asks households to pledge to participate in the Teal Pumpkin Project™.teal-pumpkin-project-allergy-friendly-Halloween

This national campaign was launched in 2014 and saw households from 50 states and 7 countries get involved in the Teal Pumpkin Project™ and FARE is hoping that this year an even bigger movement will happen with a target 100,000 households pledging to take part. The idea is simple and incredibly effective: if a household is prepared to provide non-food treats for any trick-or-treaters likely to call, they are asked to paint a pumpkin teal and place it in pride of place in front of their home. Their website also has a free printable sign to indicate there are non-food treats available, which can be downloaded here. Even though this initiative was originally launched in the USA, the project has gone viral through the various social media platforms and allergy parents around the globe are making the pledge for this October 31st.

So, what can you do to be involved? It’s easy, it really, really is and if you’re planning to actively celebrate Halloween this year, I would ask you to please consider taking part:PTPP-2

  • Don’t just buy sweets to hand out from your door, but take a little time to consider those who can’t enjoy these treats and buy some non-food treats for them too. The treats don’t have to be expensive: trading cards, stickers, glowsticks or stationery will all be gratefully received, so visit your local pound or dollar store and see what your money can buy
  • Once you have your non-food treats, paint your pumpkin teal and put it out where it can be seen. There will be many who won’t understand the significance, but trust me when I say almost every allergy parent will know and will appreciate your effort
  • Visit the FARE website and print out one of their posters or signs to put up in your windows to make it clear you’re taking part in this year’s Teal Pumpkin Project™
  • Take the pledge via the FARE website and encourage your family and friends to do the same

And remember, your involvement could make a big difference and ultimately save the life of a child like M. 

More than a smile

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It all started with a simple compliment that was probably given without too much thought, almost a throw-away comment, but the words, planned or not, had a profound effect months ago and still do. I had walked M and G to school after a particularly difficult night with M,  following on from a couple of really tough days and I was tired and emotional as I left the school grounds. Passing their Head at the gates, I gave a small smile, a nod of my head and a quick reply to his question about how M was feeling. His next words stopped me in my tracks and even now continue to resonate in my memory, especially when things are feeling a little more challenging or tiring than normal:

“I just wanted to say that I admire your constant smile and upbeat attitude about everything. Your positivity is reflected in the way both children deal with whatever’s thrown at them in the classroom and in life.”

My garbled response was a variation of my stock answer:

“What else can I do, but smile? If I didn’t I might end up crying, but that won’t help M or G or me; and it won’t change the way things are…” (I shrugged) “…besides, if I don’t smile and get on with things, who else will? That’s my job as Mum.”

“That might be true. but I know a lot of people who wouldn’t be able to smile about it. They’d feel hard done by and resentful of the hand they’ve been dealt, their response would be focussed on complaining – that simply isn’t you or the children.”

I don’t know if the exhaustion of a failed food trial and a bad night’s sleep had made me more sensitive to the world around me, but his words had an impact that I felt resonating deep in my soul and gave a lightness to my step that certainly hadn’t been there 10 minutes earlier. All the way home, with unexpected tears in my eyes, 11987081_10153905230214523_3086822525667980358_nI pondered what he had said to me. After all, am I really that unusual in my response? I don’t feel particularly unique in my attitude and, believe me, I can certainly have a moan with the best of them. I suddenly had reason to reflect on how I present our situation to the outside world and why I smile, even at the most difficult of times.

I smile because, despite everything – the difficult pregnancy, the premature birth, the EGID diagnosis and the decision to tube-feed – I have a lot to celebrate. I have 2 amazing, beautiful, cheeky, intelligent children, my children with super powers, who astound me regularly with their unexpected insights into the world and make me smile. Whilst I might not be able to say truthfully that they are both “happy and healthy”, the wish of every new parent as they await the arrival of their latest addition, they are growing into young people I am proud to say are mine and fascinating individuals in their own right. They might have their struggles to manage, but they are here with me and every day with them is one more opportunity to cuddle, to kiss and to share their lives. As a family we have a lot of fun and there’s always a reason to have a giggle, laugh out loud and just smile together, even at the darkest moments.

Of course the truth is that, in many ways, my smile is also much, much more than a reflection of the joy I feel when spending time with my nearest and dearest. It is also my most effective disguise. If you look hard enough, there will be times when you might notice that the smile doesn’t quite reach my eyes or that my smile is perhaps a little bittersweet. Those are the days when it’s been hard to fight the urge to crawl back under the covers and pull the duvet over my head. The days when getting up, getting dressed and just being is a massive success.12049331_865332913546071_5149015929277272601_n The days when it’s been hard work to put one foot in front of the other and not just get started, but keep going too.

And I’m not alone. Out there in the real world are a huge number of parents who are facing the same struggles, fighting similar battles and often surviving a reality that is far harder than the one we face each day. I have been privileged to meet and get to know some of these superhero parents through our shared experiences and I see that same positive and undeniably brave approach to life reflected in each and every one of them. They are often the parents who just a tiny bit more weary at the school gates, a little more contemplative at the end of each day and a lot more determined to make the most of every moment they have because they know just how precious those minutes are. They will be the ones who will shrug off your questions about their well-being and turn the focus firmly back to you and yours. Not because they don’t want to answer, but because they know that if their emotional floodgates are opened, it will cause a tidal wave that will engulf them and make keeping their heads above water just a smidgen harder to do. And they will be the parents that tell you they don’t consider themselves particularly special or outstanding or unique because this is their life, they know they can’t change it or their children and nor would they want to. M might end up being the cause of many more grey hairs than I’m ever going to admit to, but I wouldn’t have him any other way; he wouldn’t be him any other way; and those parents’ love for their children transcends the unexpected difficulties they’ve been presented with.

I want to finish with a beautiful thought that a friend shared on FB when we were reflecting on this thought-provoking blog post and our own life experiences as special needs parents:

“That’s the thing…we weren’t given these special children because we are special, they make us that way with how amazing they are.”

superhero

The Beauty of Brighton

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Having made the epic journey to Hastings to dip our toes into events of the past, we took full advantage of being near the South coast and decided a side trip to Brighton was in order. Our Sunday started at a slightly slower pace and once the unavoidable homework was out of the way, we jumped into the car to head an hour west to our destination. I achieved the ultimate moment of parenting success, entirely unplanned, article-1363789-0D813C3A000005DC-44_964x628when G spotted the infamous white chalk cliffs of the area. I hadn’t realised it was something she had learned a little about in geography this term and mentally gave myself a pat on the back for ticking the boxes for both her history and geography classes.

Following what seemed like an army of motorbikes of all shapes, colours and descriptions into Brighton, we found our way to a centrally located car park before heading out on foot. We had managed to park strategically close to the main shopping centre and started our short visit with lunch at what has become one of our all-time favourite allergy-friendly restaurants, Wagamama. As at our home branch, their service here was phenomenal, the attention to detail spot on and we all enjoyed food that we knew would be reassuringly safe for both M and G. Once the most critical part of our day was dealt with, we walked to our final destination for the afternoon, 20151011_124225the Brighton Pavilion. A new experience for all of us, although I have seen it from the outside before; and what an amazing experience it was.

The children were astounded to see the Indian-inspired splendour of the Royal Pavilion buildings in Brighton – another big tick here as M will be studying India later in the year! – and keen to listen to the audio guides telling them more about the design, build and use of the Pavilion since it was first transformed from modest seaside villa to magnificent palace for King George IV in 1815. M fell in love with the Banqueting Hall with its impressive dragons, life-like lotus leaves and the 30-foot high chandelier, covered in over 50,000 crystals, hanging in the centre of the room. Equally amazing was the music room, which has been painstakingly restored, not just once, but twice since 1975 due to excessive damage caused first by fire and latterly by storm damage. G and M also loved trying to spot the secret doors, behind which were often hidden one of the multitude of toilets in the place or access passages for the servants so that King George wouldn’t see them as they went about their work.

Indian-Soldiers-in-the-Music-RoomThere is currently a photo exhibition about the role the Royal Pavilion played during WWI and Mike and I were fascinated to read about the conversion of this once royal palace to a hospital for troops from the Indian Corps wounded on the Western Front in France and Flanders. As we walked from room to room inside the Pavilion admiring all the artefacts on display, there were often also photos showing how each room had been converted for use during the war. Huge efforts were made to not only protect the historical elements of the palace, but also to make these injured soldiers feel comfortable and “at home” during their convalescence. What struck me the most was a statistic about the number of patients treated during the 14 months it was open (though please forgive me if I misquote as my recollection is perhaps a little hazy): between December 1914 and January 1916, around 2,500 Indian patients were treated and only 18 died. Amazing when you think how horrific many of the injuries suffered by those troops were. Following the Indian military hospital, the Pavilion was then used for a further 4 years as a hospital for British amputees, who not only had wounds treated and prosthetic limbs fitted, but were also then rehabilitated to develop skills to help them in their later lives once the war had ended.

The Royal Pavilion our home from 1890 to 1914 and 1921 to 1928

The Brighton Royal Pavilion is a truly captivating and beautiful place to visit, with a fascinating history and it delighted us all. We spent a great couple of hours exploring the rooms and admiring the architecture and I’m glad that we were able to make that stop before heading back home after our busy weekend.