Tag Archives: encouragement

All the Fun of the Fair

There’s no doubt that the weeks since April have dragged past at snail’s pace for a certain young man and his broken leg. 10 weeks into having that leg encased in plaster, and all of M’s hopes were pinned on the sarmiento cast finally being removed and allowing what must now be a skinny, white limb see some summer sun and fresh air. Unfortunately, the last fracture clinic appointment did not go according to M’s plan and the x-rays showed that the bone regrowth had slowed down and was not at the level the orthopaedic consultants were expecting it to be after over 2 months in a cast. The news that he has to survive another 3 weeks of limited mobility was not well-received and, having seen him stoically accept the verdict before crumbling once we left the unit, it was a massively disappointed and heartbroken little boy Mike and I had to take back home. The next 30 hours or so saw him at a lower point than we’ve experienced for a long time and it was only thanks to his sense of commitment and phenomenal strength to keep fighting the fight that we managed to convince him to go to his school’s summer music concert that evening, where he disguised his emotions well and took part on his cello and in the choir with reasonable gusto.

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What we needed was something to cheer him up and fortunately that something was already pencilled in on our calendar for that very weekend. It might not have looked too promising during Stagecoach on the Friday night as M broke down in tears about not being able to dance with everyone else, but thanks to much encouragement and enthusiasm from his big sister as well as a determined spirit that won’t be kept down, by early Saturday morning, things were looking a lot brighter and it looked like we had weathered yet another health storm.

The reason? The song and dance routine that their Stagecoach school were going to be performing as part of our local carnival’s parade and a huge serving of 70s disco to boot. We had always planned for M to be part of the parade in his wheelchair, knowing that the mile and a half long route would be too much for a newly healed leg.

IMG_0502[1]The preceding weeks had been busy with costume preparations and plans to pimp his wheelchair for the event and his decision to ask for a 70s themed cast at the previous fracture clinic meant that we were all set for the parade. Mike and I had also been roped in to help out for the day and I had even managed a few tweaks to our own clothes to make sure we were part of the 70s disco theme. All of the children were fantastic as they sang and danced their way towards the town’s football club and entertained the crowds, who joined in with the familiar moves of “Night Fever” and “Tragedy”. I was particularly proud of G, whose hard work and dedication to her dance saw her selected to be one of the 2 dance captains and she led the group with a flair and sense of fun that I rarely see from her when she’s performing. She really stepped up to the mark and the smile on her face showed just how much she enjoyed it.

And M enjoyed himself too, despite his insistence he wouldn’t. He and I showed off our moves as we grooved our way down the High Street and he waved right and left as friends called out and cheered our group as we went past. Of course the disappointment of not being able to participate as fully as he would have liked was still there, but he was caught up in the excitement of the day and really did enjoy all the fun of the fair!

 

Another food and an unexpected insight

This moment has been an awfully long time coming, over 4 months and 7 food fails in a row in fact, but finally we have a fourth safe food to add to M’s repertoire: apple.  The last few months have been emotionally tiring as we’ve worked our way down the list of food challenges agreed with our dietitian and M has systematically, and holy-grailsometimes dramatically, failed each and every one.  It has felt as if that elusive fourth food was our personal Holy Grail and there were times when Mike and I both began to wonder when we would ever achieve it.

One of the complicating factors we’ve had to deal with during the food challenges has been the whole host of reactions that we’ve seen along the way.  We were never told, as far as either of us can remember, that it was possible to see so many different allergic responses to the varying foods M was trialling and we were certainly not advised that he could experience some that he’d never had before.  His severe oral reaction to sweet potato was, in many ways, the easiest one to identify, even though horrendous to see happen, as we knew immediately that it had to be an instant fail; but the others have not necessarily been so straight-forward.

complicatedOur main goal is to maintain the improved health and toileting that M has achieved since he first went elemental back in December and even though that has meant ruling out some foods that would have been great to have back in his diet, I remain firm that his well-being, both physical and psychological, is our primary concern.  At our last appointment, we discussed with both M’s consultant and dietitian our approach to the food challenges and agreed that anything that causes a loss of bowel control, of any description, has to be considered an instant fail for the time-being. These foods are not ruled out permanently – well, sweet potato is as far as I’m concerned! – and we will, without a doubt, revisit them at some future point once we have more safe ones back.

Sadly he has reacted to some of his old favourites, but he has coped admirably well with accepting the outcomes.  He still remains reluctant at times to acknowledge exactly how he is feeling and telling us about the aches and pains we know he must be experiencing, but 9 years of parenting M means that I have become highly attuned to his moods and can sense when he’s feeling under the weather.  His willingness to lose a food again at times has indicated to us that he also identifies when it’s making him feel poorly, especially when he has been prepared to fight for those that he believes he can cope with.

Never was that so true as at the start of our apple challenge.  During the first couple of days, his body reacted with hives and itchy skin, just as we saw when we first reintroduced rice and he also struggled a little with his bowel control.  However, unlike with other foods where he has reluctantly agreed that it was likely a negative response to the challenge, this time round M insisted that the fault was his for not listening to his body and responding quickly enough and that he felt he was still in complete control.

10 days on and he has proved to be right, which is a valuable lesson for us all:

We have spent years fighting for our voice to be heard when it has come to M’s health and each step of the way have been shown to be right in our concerns and our thoughts for his ongoing treatment.  It seems that now we need to start listening to what M has to say too and take into consideration his opinions and insights about his body.  Of course, at 9 he is nowhere near old enough or responsible enough to make his own choices or sway our decisions unduly, but, just as I have spent a long time arguing my place as the expert on the subject of M because I’m his Mum, now as Mum I need to encourage him to be his own best advocate and take an active and involved role in his care.  After all, that’s a key part of my parental role.apples7

And whilst I ruminate on this latest insight into M’s development, I’m eagerly gathering ideas and recipes to incorporate apple, in all its glory, into his diet.  So far, we’ve ventured little further than apple juice, apple slices and apple pancakes, but with the help of good friends, including one whose son is just a few steps further down the food challenge road than M, and great resources such as The Recipe Resource, then apple crumble, apple crisps and apple cakes are all on our horizon.

 

Sports Day success

Sports Day conjures up so many memories for me: of races run, giggles with friends, frenzied cheering and the exhilaration of realising that your House has actually won the coveted cup.  A day full of so many heightened emotions and today, for me, held more than any other in the past.  Not surprisingly I wondered what the day had in store for M and worried a little about how he’d manage the races with his cumbersome pump pack strapped to his back and his tube taped to his face.  And it was the end of an era for G.  We’re in to the final stretch:  May half-term is over, SATs have finished, the Year 6 production rehearsals are ramping up and in less than 6 weeks time, my first baby will have finished her Junior school years and “big school” beckons for September.

One of the very many things I love about the kids’ school is that they still hold a competitive Sports Day, where winning means something, but is not as important as team spirit, or encouragement, or taking part. or cheering for everyone in the race, whichever House they represent or whatever position they finish.  I still remember the very first Sports Day I saw at this school, when G moved there half-way through her Year 4 year.  I was instantly impressed by the support and encouragement given to, and by, every year group to each other.  I saw Year 6 boys cheering their peers on, waiting by the finish line to welcome the last child in,20150612_100530 however old they were and thumping them on the back for a job well done. When I saw that I knew that we had made the right decision in choosing this school for our pair and looked forward to them becoming a part of it.

Three years on from that first Sports Day and I stood proudly on the sidelines cheering both my children on. The first half of the morning was occupied with following M’s class around the circuit of team races and the occasional mad-dash removal of his pump pack when it suddenly became evident that neither skipping ropes or sacks were going to work with a heavy back-pack in situ. He took part in every activity and my heart swelled when his entire class chanted his name as he completed a second turn in the sack race for his House. For his lap in the family relay – a team consisting of one child from each year group – photo credit to L Dacrehe and I agreed that he could race pump free and with his tube strapped down and, boy, was it worth it. He flew down the track at lightening speed, proving to all watching that his tube really doesn’t stand in his way, especially not when it comes to winning points for his House.

20150612_120335Disappointingly, I couldn’t watch as much of G as I would have liked, but despite only being able to watch her complete one of the initial team races, I was able to cheer her on during what I was thought was her only other event, the over-and-under race.  To my surprise, as she and I stood side-by-side watching M run his relay, surrounded by their House, she announced that she was also running in the Year 6 girls’ relay, a race I would have never anticipated her taking part in as she’s really not a runner at heart.  And so, this year’s Sports Day experience finished in fine fashion with M taking G’s place next to me, cheering his big sister on as she competed in her final race of her Junior school days.