Category Archives: Parenting

Feeding Tube Awareness Week – Day 1: Choosing to raise awareness

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7beb7940ed39bc80ce6cb39710abb740If anyone was going to describe the last decade of my life, the one indisputable conclusion they’d end up reaching is that it’s been anything but boring. Thanks to a pair of children who have thrown more than their fair share of life challenges into the mix, we’ve weathered more storms than I ever believed possible and, for the most-part, we’ve come out the other side still smiling and relatively unscathed. We’ve survived a lot of challenges, met a whole host of amazing people and learned a great deal along the way; and if I had to pick just one lesson that constantly resonates, I’d have to say that we now know to never take things for granted as they can change at the drop of the proverbial hat. Two years ago I wrote about our limited experience with feeding tubes and then, less than a year later, I found myself blogging about my brand new super-tubie. Another year on and the NG-tube has gone for the time-being and the only thing I can say with absolute certainty is that I have no idea if or when it will make a reappearance in M’s life.

The lessons that the last 12 months have taught us all have been huge and I have come to love and hate that feeding tube in equal measure. For the first time in his life, the reality of M’s chronic illness and multiple food allergies was outwardly visible and finally people understood from a glance that there was more to him than initially met the eye. The constant presence of the NG-tube opened up more conversations and opportunities for me than ever before and I’ve been able to share experiences, offer support and educate the wider community about EGID. M and his froggie friendWe all felt the benefits of that visibility to start with and I no longer felt the underlying pressure to defend the true extent of M’s illness and food allergies whilst my outwardly healthy-looking youngster was intent on tearing around practically making a mockery of every problem and pain we said he was suffering.

Of course, the flip-side was that ever-present tube. The one that there was no escaping or avoiding, no matter the event or occasion. Christmas, birthdays, performances and holidays, the tube was M’s constant companion and he became increasingly aware and conscious of the curious glances that were thrown his way by adults and children alike. His wonderful classmates and our village took it in their stride and quickly became so accustomed to it that M was never subjected to a second glance, but the wider world could stare until he disappeared from view. As well as the tube, we had the problems of M’s face reacting to the unavoidable medical tape and it took us several attempts to find a tape that didn’t burn his cheeks. Even when we finally found the best solution for him, at times he was left with red, sore and sensitive skin that only time tube-free could heal.

Looking back, 2015 was a year unlike any other in our family’s life, but I don’t regret a single moment of it. From that difficult decision to place the NG-tube and start M on an elemental diet, we have seen tremendous growth and an improved health that exceeded all our expectations. Most of all, we now have an opportunity to help raise awareness from the standpoint of personal experience and a road well-travelled, something that, believe it or not, I wouldn’t change for the world.

Introducing Leo…

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12239456_10153105383806123_4074499908760813169_oWe’ve had more than our fair share of animals since the children were small and over the years our house has been home to, believe it or not, 7 cats, 1 rabbit, numerous fish and now our latest family member, Leo. For the last 2 years or so, M has been eager to add another pet to our household and not just any pet: he has been very specific about the animal he’s had in mind. I have to be honest and say that I didn’t leap at the chance when he first made his bid, after all I have years of Mummy experience with M’s wildly fantastic and short-lived fads and this wasn’t one I was prepared to indulge unless he was genuinely intent on looking after it for the long haul. I’ve long-held the opinion that our pets have been a massive source of comfort not just for M, but for G and me too, and it was something of a stretch to imagine that this creature would bring the peace that cuddling one of our cats instills in me.

However, M has stuck to his guns and continued to ask for his new pet and finally, back in about October, I gave in and agreed that he could have it and so our plans for introducing a bearded dragon to the household began. Due to the high costs of kitting out this exotic creature, we discussed with M the need for this to be his joint Christmas and birthday present and something we couldn’t just go out and buy tomorrow. I am incredibly impressed by the mature attitude with M accepted this plan, a real sign that my baby really is growing up fast. 20160129_152625The first step was to buy him a book about them and he has spent hours reading and re-reading about bearded dragons and how to best look after one. His knowledge about these interesting animals is impressive and he has willingly shared what he knows with friends, family, doctors and nurses alike. Knowing that a GOSH admission could happen any day, we delayed our actual purchase until M was back home and life had settled down to something resembling our normal once again.

With the start of a new year, so also started M’s career as the proud owner of a bearded dragon. I was lucky to discover one on-line that needed re-homing and although I was initially concerned that M wouldn’t be keen on a “second-hand” pet, he quickly leapt at the chance when I was able to reveal that his new acquisition would share his birthday! The dragon’s previous owner had called him Nigel, but M felt that didn’t suit and quickly renamed him Leo. The vivarium was strategically measured and fits on top of the pint-sized wardrobes in M’s bedroom, so M can really take full charge of looking after him. Mike and M have willingly taken on the task of feeding the fresh veg and live crickets on a regular basis, which is just as well as it’s the one thing I have refused to get involved with. M spends time every morning and evening handling and chatting to Leo and is slowly filling his diary with play dates for his friends to come and meet a real life dragon. I must admit that owning a reptile was never at the top of my bucket list or life plans, but will confess that he is strangely intriguing to watch.

Leo

Thank goodness for TGI Fridays!

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When you’re an allergy Mum, there is nothing better than finding somewhere your entire family can eat safely when you’re out and about. I spend a lot of my time in the kitchen when I’m at home, tweaking recipes and continually trying to find new, tasty and interesting ways to prepare 5 safe foods for M and sometimes I just want a break from it. We have found some firm favourites amongst the chains, who have not only been able to cook M-friendly food when we were excluding just 7 – remember those days? I just about can – but have also impressed us in the last 12 months too. From old faithfuls such as Pizza Express, Giraffe and Bella Italia, to newcomers Wagamama and Jamie’s Italian, my cup quite literally runneth over! Our holiday to Cornwall last summer led to the discovery of an amazing small independent restaurant who catered for M without hesitation and made all the difference on our first holiday with a tube.

tgiWith the start of a new year, we decided to branch out and challenge yet another popular old friend, TGI Fridays. M has been reluctant to visit this restaurant since he went elemental last year and our first suggested meal out after he was discharged from GOSH fell sadly flat, when he refused to stay there because “..everyone around me will be eating chips Mummy…“. As we had not long had to stop the potato trial due to all his problems in hospital, Mike and I could totally understand and were massively impressed that, at long last, he’d been able to tell us his reasons for not wanting to stay. However, never one to be beaten by a near 10 year-old, I bided my time until we once again headed out for a small bit of sales shopping and decided to treat them to lunch as well. M’s first choice was Wagamama, but an ill-timed fire in their kitchen put pay to that idea and I tentatively suggested TGI Fridays as a potential alternative. Although only a couple more days had passed since our first attempt, M felt a little more able to challenge their menu and we set off on our brand new restaurant adventure.

The first thing on our to-do list was to advise the greeter of our allergy needs as soon as we arrived at the restaurant and asked for a table. I always do this when we eat anywhere new, even when it’s just a new location of one of our known safe restaurants, so that neither child has to go through the stress and embarrassment of discovering they can’t cater for them and having to leave the restaurant. The greeter asked the restaurant manager to come talk to us as this is TGI protocol when dealing with customers with food allergies. We explained M’s dietary requirements and he reassured that they could prepare chicken, apple and cucumber for M, though sadly not any rice as their current rice dish contains a Cajun spice mix which we haven’t trialled with him as yet. With M happy that he would be able to eat, we headed for our table, ready to peruse the choices for the rest of the family.

20160103_160912 (1)For those of you not in the know, TGI Fridays has a separate menu for allergies, which lists the lactose- and gluten-free options readily available. G was delighted to see such a selection of starters that were safe for her and begged to be allowed to try one of those as well as her main course. She opted for the BBQ houmous starter with corn tortilla chips, followed by the Bacon burger with fries from the allergy-friendly children’s menu. Having sorted our little Miss out, we’re turned our attentions to the more knotty problem of young Master M and here I have to say, TGI Fridays came into their own. The manager came to sit with us at the table, armed with a mammoth allergy information folder and cross-referenced every single menu item we were considering for both children to ensure the food would be absolutely safe. He advised us that they used separate chopping boards for the food preparation to avoid cross-contamination risks and showed an in-depth understanding of our requirements which reflected the extensive food safety courses I later found out the restaurant chain insists all their managers attend.

The only potential issue arose when we discussed what oil M’s chicken would be cooked in as the restaurant uses either olive or the more generic “vegetable” oil in their cooking. As we are still limited to rapeseed and coconut oil only, I asked if the chicken could be cooked without oil and the manager went off to see what could be done.20160103_160748 I was impressed to discover that before settling on that as an option, he had actually investigated whether they could get hold of any rapeseed oil from one of the neighbouring restaurants for M’s chicken breast, but had rejected that option when he discovered those restaurants couldn’t guarantee that there was no cross-contamination risk. Instead, the chefs prepared the chicken oil-free and the speed at which it disappeared from M’s plate is a testament to how well prepared and tasty this dish turned out to be. G’s food vanished in similarly quick fashion and Mike and I breathed a huge sigh of relief that our risky restaurant choice proved to be such a success.

*following our visit, I discovered that TGI Fridays also have an impressive allergy menu on-line, which allows you to select the foods you’re avoiding to see what choices you have. This is a great tool to give you an idea whether they can cook for you or not, but nothing beats talking to the restaurant managers themselves.

 

 

There are no strangers…

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“There are no strangers, only friends you haven’t yet met”

W.B.Yeats

Like most people, I have collected a variety of friends over the last 30+ years, picking them up as I’ve ventured down the various paths my life has taken me. Those friends I’m still in touch with these days span the years: from those I met in the playground and classroom during my first decade to those I survived my angst-ridden teen years with; from the few that are still hanging around following university and my accountancy training to finally that group of “Mummy” friends made since we first found out we were expecting G. In the last 5 years, my friendship group has grown massively as I’ve added to the mix those who are travelling alongside us in our current journey; the fellow EGID Mums and GOSH parents we’ve been privileged to get to know in some of the most challenging of times. These are individuals who really understand the daily struggles and ongoing battles that we survive and are always there to lend a shoulder to cry on or offer words of encouragement or advice when no-one else can. What makes these friends so special is that, in many cases, I’ve never actually met them face-to-face, thanks to the rise of the internet and social media, and yet they are unquestionably available whenever they are most needed.friendship-childhood-1024x769

During M’s recent GOSH admission, we received some amazing demonstrations of support and love from my friends, more than I could ever have expected, and which ensured I never felt on my own. Almost every day I received a message via text or e-mail or FB asking how things were going, sharing news from home and sending love, thoughts and prayers to both M and me. Sometimes those messages would become a conversation and sometimes they simply stood on their own as a reminder that other people were thinking of us. Cards and presents were sent to cheer us both and M’s class wrote their own messages to him, keeping him in touch with all that was happening in school.

We were lucky to receive visits from a couple of good friends: one who we met through FABED and the other from a Mum I met on Rainforest ward during our 2014 stay. These visits really brightened up the long days in hospital and I hope our visitors understand just how much their time meant to us both. Much to M’s disappointment, a couple of other planned visits didn’t happen due to our inability to leave the ward due to Klean-prep, last-minute appointment cancellations and at least one epic failure by me and the other Mum to successfully liaise where we were and when; but most importantly, the thought was there. We also got to meet 2 of shhh-gin-and-tonic-in-disguise-mug-p2968-4246_imagethose “virtual” friends from on-line support groups, who during the length of our admission were also admitted to GOSH. The ability to finally put faces to names, with a reasonably comprehensive background knowledge already in place and be able to spend time chatting, laughing, drinking tea and commiserating was priceless.

One of my highlights was the opportunity to reconnect with an old FABED friend and fellow blogger, Annie, one afternoon. Her son, R, had been at GOSH for tests that week, but had been staying at the patient hotel with his Dad. On this afternoon, they had been sent up to Rainforest ward for a final meeting before going back home and were given the bed across from M. Whilst Annie, her husband and I chatted away, catching up on news from the last 9 months, M and R renewed a previously fleeting friendship and spent time talking, constructing vehicles, discussing bearded dragons, watching TV and generally just spent time chilling out together.

The most truly astounding show of support came from another Mum that I’ve never met in real life and definitely wouldn’t know if I bumped into her on the street. She is based in London and has a friend who works as one of the visiting art teachers at the GOSH hospital school. Upon hearing that M was confined to the hospital buildings and that I had little time to get out and enjoy much more than quick foods for my meals, she thoughtfully prepared some home-cooked meals that she tailored for my dietary preferences, packaged securely for storage in the ward kitchen and sent in with her friend. These meals could be easily heated in the microwave and were a real treat after days of utterly uninspiring sandwiches and ready meals. As well as this bag of goodies for me including some much appreciated fresh fruit and biscuits, she also tucked in board games and some hand-made get well cards for M.Picture2

And it wasn’t just the support in hospital that made the difference: there were people keeping the home fires burning on my behalf too. Both schools kept in touch, asking for updates, talking to G to find out how she was coping with it all and keeping me informed of arrangements for the end of that term and the start of the next. Their Stagecoach principal e-mailed through a suggested directing project linked to the new term’s theme, which would provide some much-needed distraction whilst he was confined to his bed and sent text messages to ask how things were progressing, when we were coming home and wishing us a peaceful Christmas. Finally, thanks to the Mum of G’s best friend, N, Mike could keep those work commitments that he simply couldn’t rearrange as she kindly opened her house to G both before and after school to ensure she was looked after and cared for at all times too.

But that wasn’t part of the plan

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Without doubt, December whirled past in something of a blur. As I’ve already posted, we had been waiting for an admission to GOSH since last July and naturally it came when we were least expecting it. This admission had been planned by M’s dedicated dietician, who was hugely concerned by the continuing lack of progress we were making when it came to successfully reintroducing food back into his diet and she was keen to challenge him within the hospital setting so that they could see exactly what we were experiencing at home. Our initial discussions all those months ago were in terms of weeks: a lengthy admission, perhaps up to 6 weeks, to fully understand how M’s bowel and bplanody respond when food is eaten; a daunting prospect when you have another child to love and nurture at home as well as a job to hold down.

Move forward 3 months and we reached our October outpatients appointment with no admission in sight and, due to the lack of long-term gastro beds at GOSH, no clear indication of when that elusive bed might eventually become available. Cue the recommendation of a radical rethink and a change of plan to a one week admission, followed by a series of further 1-week stays, scattered here and there throughout the year as and when there was a bed. The gastro team, keen to get him in before Christmas, felt this was our best chance of getting a bed any time soon and so we rolled with the punches and agreed to this amended plan, still not quite clear as to when the admission would actually happen. Over the following weeks, I spent valuable time fine-tuning the details with M’s dietician, agreeing what foods we would choose for challenges during our stay and discussing what the medical team were hoping to achieve through this process. The hardest part remained the lack of a long-term plan. The truth is that M’s continued problems with so many of the foods we’ve tried to introduce is baffling his doctors and until this admission was under our belt, they just didn’t know in which direction we’d be heading next.

By the time M was admitted on December 3rd, the plan had been tweaked again and unsurprisingly would continue to be so during the length of our stay. That one week admission suddenly became a 2-week stay and the 2 foods we had agreed to trial: potato and sweet potato, suddenly became 4: potato, egg, banana and salmon. I had already expressed some concerns about the plan to challenge him with 2 foods in a week and the increase to 4 over a 10-day period was now ringing some serious alarm bells in my head. Mike and I knew full well that the chances were that I would be bringing home a less-than-stable M just in time for Christmas and were resigned to rolling our sleeves up and spending the holidaysSmall-Changes working hard to bring him back to a healthy position ready for the new school term. We weren’t happy about this situation, but felt there was really no alternative; we had to give their plan a try in order to find some answers.

Despite those misgivings, the ones I had fully voiced to everyone and anyone who would listen from the minute I first met with M’s consultant and dietician when we arrived at GOSH and that I continued to express through every step of the following 10 harrowing days, we set off on this plan with the hope that we would find another safe food for him and perhaps even start to understand what has been troubling his gut for so many years.

What wasn’t part of the plan was the continued reluctance of the medical teams in hospital to listen when I told them M was beginning to show signs that all was not well with the food challenges and that he was reacting to the foods;

the plan didn’t anticipate the reality of M’s bowel being so unable to cope that it refused to work properly by the time we were 10 days into the 2-week admission;

and it definitely didn’t include 10 litres of Klean-prep (the worst bowel prep known to man) being continuously pumped into his tiny body over a 6-day period in an attempt to clear the resulting chronic impaction.

Nowhere in the master plan had I seen fair warning that, by day 14, I would be rendered utterly helpless and only able to sit, holding his hand and massaging his aching limbs, as M was left bent double from the cramps that were consistently hitting an 11 on the pain scale, where 10 was classed as the worst pain imaginable.

dancing-in-rain

Somehow we limped through endless hours of pain and frustration and dashed hopes, and we survived. Somehow we talked and ranted and sobbed and challenged until finally the medics acknowledged that things had gone horribly wrong, and we survived. Somehow we managed to stand strong and stay strong and stand our ground and refused to compromise on what we knew was in M’s best interest, and we survived. Somehow we rode out the fiercest storms and learned to dance in the rain, and we survived. Somehow we found enough humour in each day to keep the smiles on our faces and to laugh the smallest of giggles, and we survived. Somehow we got through the unexpected and started to find our way back to our normality, and we survived.

But that wasn’t part of the plan.

Another year over

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And just like that, it’s another year over: 12 months of big medical decisions, longer-than-expected hospital admissions and a huge amount of growing up in the 7Y2D household. There’s still lots to share about our December, but that will have to wait for 2016’s posts to start, especially as I need to gather my thoughts and reflect with a clear head and heart about all that happened.

For now, let me simply wish you all a new year filled with peace, happiness and love

from my family to yours, Rxxx

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To my darling daughter,

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To my darling daughter on the eve of your 12th birthday:

This wasn’t quite what I had planned.

Today I was supposed to be baking up a storm in the kitchen, IMG_0063[1]making some special cupcakes to celebrate your 12th birthday tomorrow, cakes to make up for you having to celebrate your last birthday at GOSH with M and without a cake. The ingredients are bought and hiding at the back of the cupboard, so maybe I’ll have the chance to bake them for you for Christmas because instead I’m over 100 miles and 3 hours travel time away from you.

Today we were supposed to be enjoying time together as a family as well as with your beloved Godfather, Uncle A and his family; instead you and Daddy are at home with them all, whilst M and I while away our hours within the confines of GOSH on our own.

Tomorrow M and I had planned to serenade you awake with a rendition of “Happy Birthday” before watching you open your presents and cards and sharing the excitement of each new gift with you; 20151018_133210instead we’ll be watching via FaceTime to see what goodies you’ve received with our fingers crossed that our cards have arrived from London in time.

Tomorrow was going to be a busy day: first to watch you both in our church Nativity, then head off for a special birthday riding lesson before a late lunch at Wagamama to celebrate your big day; instead you’ll be doing those things with Daddy, Uncle A and the rest of the gang, whilst M and I share a quiet day and hope to be able to get to the Carols by Candlelight service at the church around the corner from GOSH.

However, it doesn’t really matter what was planned or what’s going to happen. The most important thing is that even though we’re all these miles apart for your special day, M and I will be thinking of you and celebrating with you and loving you as always. I’m so sorry that we can’t be there with you this year, that we can’t spend your birthday in the way that we all wanted to, but I’m glad that Daddy, Gu and Uncle A are all there to help you enjoy it as much as possible. The last 10 days have been hard, especially knowing that we wouldn’t be home in time and I hope that next year will be very different. In the meantime, know that Mummy loves you very much; that, as I tell you so many times, you will always be my baby, no matter how old you get; and be warned that, when I see you next, I’ll be wrapping my arms tight around you and hugging you close for an awfully long time. B128

Happy 12th Birthday Floss xxx

Déjà Vu

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it-s-like-deja-vu-all-over-again-yogi-berra_designdéjà vu  (noun)
 
  1. a feeling of having already experienced the present situation

Last week, when I penned my blog post marking M’s 1st tubiversary, we were in the midst of a busy week involving Christmas music concerts (G), school Christmas fairs with a choir appearance (M) and my own choir concert; and I was trying hard to avoid an eerie sense of déjà vu that just refused to go away. At the back of my mind I was very conscious that it was one year on from our last GOSH admission and had hanging over me the reality of a long 22 weeks wait for a bed to become available for another one. I can smile about it now, just,  but the stars really were aligned for last week’s outcome: my Mum was abroad again; my choir’s Christmas concert was planned for the Saturday night again; and G’s birthday was fast-approaching again.

So really, when you think about it, I shouldn’t have been surprised that the phone-call actually came when we least expected it. I think I’d been lulled into a false sense of security by the time we got to the Wednesday night. Last year our phone summons came at 1.30pm on the Tuesday afternoon and M and I had to be at GOSH by 11am Wednesday, so with no communication from them at all, other than the information passed on by our dietician that he was now top of the waiting list when Thursday dawned, I thought that was it for another week. I had my Friday planned – pack some birthday presents for G, pick up some bits and pieces for Christmas and pull together the items I’d want to take with me to GOSH when we finally had to head to London; plus some much-needed sorting out in the house to get it ready for G’s godfather and his family to visit for her birthday weekend.

I was, in fact, mid-conversation with a work colleague about what was going on re his admission, when the office phone rang and that was it. The bed was available now and we needed to head to GOSH and Rainforest ward as soon as we practically could. With so little notice, dropping everything to go there and then just wasn’t possible, but fortunately Mike and G were at home as she had an inset day, so were able to speed through a couple of loads of laundry and start pulling out all the essentials for a 2 week hospital stay.7176037017_45f555b6cc_z I started contacting those who needed to know – school, work, his GOSH dietician – and somehow managed to put in another couple of hours at work before heading off to pick M up from school and finish the packing job. The 4 of us eventually set off from home and hit London perfectly in time for the tail-end of rush hour traffic, meaning we finally reached our destination at around 8.30pm.

M and I quickly settled in the bay on Rainforest, not quite the same bed as before, but close and with some old familiar and very welcome friendly faces amongst the nursing staff to help us feel at home. It was almost as if we hadn’t been away, even though it had been 12 months since our last stay. And that was when the real sense of déjà vu hit – we had been here before. It was not just the same situation, the same bed or even the fact that it was the same ward, but on exactly the same day too, something that we could never had anticipated, even though this admission came as no surprise at all.

 

 

A Numbers Game

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Tomorrow’s Tubiversary marks:

20141207_12421712 NG-tubes and the accompanying tube changes, which included…

…2 tubes pulled out by accident and 3 that broke unexpectedly;

4 pump backpacks worn out and replaced (and number 5 will be needed soon);

approximately 70 Feeding Friends stickers and 60 strips of Tegaderm used to keep that tube firmly stuck to the side of his face;

and at least 3 other tapes tried, tested and rejected;

1 Christmas, 1 Easter and several birthdays survived and celebrated;

11026157_10152614450811123_382817830123987117_oNearly 1 whole school year achieved with only a few days off;

1 week away in Cornwall enjoyed;

4 weekend trips planned, packed for and successfully negotiated;

5 safe foods and 2 safe oils identified and back in his diet, resulting in…

…around 15 new recipes adapted and perfected…20151121_162110

…4 new kitchen gadgets invested in and well-used…

…and impressively 16 restaurants found to be amazingly able and willing to accommodate the trickiest of dietary requirements

 

Not forgetting:

20150212_082048

M's daily batch of medicines

410 litres of E028 pumped

12 daily medicines reduced to just 3;

nearly 3kg of weight gained

5cms of height grown

 

And including:20141216_121143

12 months of stock counting, and rotating, and checking, and ordering

52 weeks of new syringes and dressings

365 days dealing with pumps beeping – …on…off…start…stop…blockages…settings…errors…”just becauses”!

8,760 hours of making sure Pictures July 06 019the tube is tight enough, taped enough, in the right place enough…and not getting caught on anything

525,600 minutes of longing to be able to hold or stroke or kiss that precious little face without the tube getting in the way

Countless tears shed, hugs shared and frustrations vented

 

All amounting to…

One year of the best health ever

20150208_181917

 

 

 

One boy and his bike

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It will come as no great surprise to anyone who knows us when I say that M is something of a daredevil. A true speed demon who loves nothing more than racing around at breakneck speed, sometimes with a frightening lack of regard for his own well-being or my nerves. I think his attitude to life could well be described as “why do anything at walking pace when you can run?” He’s always been the same and mastered climbing out of his cot and climbing up anything to hand (think window-sills, wardrobes and shelving units) from an early age. It was something of a shock when he swept into our lives like a whirlwind, especially after 2 peaceful years with G, who took a much more relaxed approach to just about everything in her early years.

Despite M’s continuing love of climbing, which now includes any tree he can get a foothold on, and his passion for being constantly on the go even until the wee small hours, he has struggled to come to grips with the more mechanical methods of moving around. His obvious clumsiness as a toddler and unquestionable difficulties in balancing in gymnastics meant that it came as no great surprise when a few years later he was finally diagnosed with dyspraxia and dyslexia. M didn’t particularly struggle with his hand-eye co-ordination, in fact his nursery commented on how impressed they were with his tennis skills at age 3, but fine motor skills, upper body strength and balance have all taken a lot longer to achieve and are things he continues to work on both at home and in school. spark_2-0_action_3It took a little longer for him to become confident on his scooter, but his determination to succeed on a 2-wheel one, rather than the 3-wheel “easier” option, paid off and earlier this year he saved up enough money to buy himself the new one he’d been eyeing up in the Argos catalogue since last Christmas.

However, the one thing that had continued to defeat him was successfully riding his bike without stabilisers. For years, M has been telling us that all we needed to do was arrange a return visit to Canada so Grandpa could teach him how to ride his bike, just as he had G and the rest of their cousins; and there was little we could do to persuade him that he could actually learn at home. Despite M’s belief that Canada and Grandpa were the key to his success, we’ve continued to encourage him to practice at home and had even attempted removing the stabilisers a couple of times in an attempt to push him into giving it his all, but to no avail. lose-the-training-wheels-logo-new-black-on-whiteWhen M had his NG-tube placed at the start of this year, he was initially a little more cautious about all things even vaguely adventurous and after a couple of failed attempts on his bike, it was relegated to a dusty corner of the garage to gather cobwebs.

I’m not quite sure what changed over the summer, but something obviously did. It may have been seeing G and Mike head out on some   Saturday afternoon bike-rides, whilst he and I played together at home; it could have been his increasing belief that he can do anything he wants with his tube in place; and without a doubt, his improved balance that is so clearly evident as he scoots around and attempts trick-jumps on his scooter also played a part; but a few weeks ago he finally found the courage to take that last step. It came as a something of a surprise and was his response to my somewhat flippant comment one afternoon. He was chatting away to me as I was pulling the washing from the machine in our garage and talking about Mike’s need to tidy up in there. I told him that in terms of sorting out their outdoor toys, maybe we should get rid of his bike as it was just cluttering up the corner and could be put to better use by someone else. He took it as a personal challenge:

“Ok Mummy, I’m going to get on my bike and ride it now!“

and with that comment, on he jumped and wobbled his way out onto the driveway, with his toes barely touching the ground.

I watched from the kitchen door as M persevered to overcome this challenge that has been his nemesis for so many years. There was a look of absolute determination etched into his brow and he just kept on going until, with G by his side cheering him on, he finally managed to put both feet to the pedals and rode the length of our driveway. Elated with his success, both children shouted out in triumph, summoning Mike and me to watch in amazement as M grew in confidence in front of our eyes and completed his victory lap several times over. Since that day he’s improved in leaps and bounds, with his bike being the first thing he pulls out as soon as he gets home fromshutterstock_17311288 school for a few bumpy trips around the garden. We always knew that his premature arrival in the world with the dyspraxia added on top would mean he might take a little longer to master certain skills, but that he would get there in the end; and we were proved right that his refusal to be beaten by anything would eventually lead to an even sweeter success when we least expected it.