Tag Archives: love

‘looming marvellous!

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I know, without a shadow of a doubt, that G & M are not the only children across the UK, or indeed the developed world, who are currently obsessed with the latest craze to sweep the nation:  Loom-bands.  Every day as the children walk up to school with their friends, we pass child after child sporting an armful of bracelets made from these brightly coloured elastic bands.  Mike and I even have our own growing collection, consisting of bracelets and rings made by both G and M, in a variety of colours and patterns.

For the uninitiated amongst you, and I know there will be a few, you can create a range of unique jewellery, or charms, or just about anything else you think you might like, from relatively little.  All you need is:

one of these....

one of these….

...a lot of these...

…a lot of these…

 

 

 

 

 

 

 

…a vivid imagination and an endless supply of patience.

From the simple single-loom bracelet (where we unwittingly started before I knew that each pattern had a name) to the Starburst and the Inverted Fishtail, my children have been kept occupied for hours designing and making a constant stream of new creations for us to admire.  I have discovered loom-bands lurking in unexpected places and have had to think on my feet to enable emergency repairs when, at the last moment, a previously undiscovered fatal flaw threatens the final piece of art.

Just some of the children's creations

Just some of the children’s creations

I love this latest craze.  It’s not prohibitively expensive as you can pick up a bag of 600 bands and 24 s-clips for under £1; it appeals to both boys and girls, with M and his friends spending time during their mid-morning or lunch-time break to teach each other new techniques; and my pair are spending time after school to work on their bands together, rather than spending the time arguing.

Even better, it is proving to be a great way for M to hone his fine motor skills, which is such a critical part of the occupational therapy for his dyspraxia.  Putting the bands onto the loom is tricky and he has to focus on what he is doing to make sure they go in the right places.  M has also taught himself how to make some of the different patterns using just his fingers, which is really challenging the strength and mobility of his fingers and hands.  We’re yet to see whether this activity improves his pencil grip and his motor skills, but I’m grateful we’ve found something he loves to do which should prove to be extremely beneficial.

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Musical interlude

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“Music expresses that which cannot be put into words and that which cannot remain silent“

                                                                                                                             – Victor Hugo   

Everybody needs a release for the stresses and strains of day-to-day living.  For some it may be sitting down in front of the television with a large glass of something cold, for others it could be something more active to challenge the body to see just what they can achieve.  For me, there are three things guaranteed to lighten my load:  a good book; a successful bake; and music.

piano

For as long as I can remember, music has been a huge part of my life.  When I was growing up, my parents always said they knew when I was finding life tough because the music would slowly disappear from my daily routine.  I would no longer sit at the piano and sing, until eventually that dark cloud would pass and I could let the music back in.  It is amazing to me how certain songs or tunes can evoke powerful memories and the emotions come rushing back.

clarient These days, whilst the piano sits proudly in our sitting room as an important member of our family that I cannot imagine being without, I rarely find the time to bash out a tune or two.  All too often, I find myself surrounded by small children who want to play alongside me, but who don’t have the patience to allow Mummy to teach them the basics.  However, despite a certain reluctance to put in much practice at home, both G and M have chosen celloto learn instruments to play.  We were recently treated to the school summer music concert, which saw both children playing solo pieces, though I’d be hard-pressed to say who had the greater look of concentration on their face – G with her clarinet or M with his cello.

I am delighted that both G and M love to have music in their lives, a fact that I like to attribute to my incessant playing of specially selected compilation albums during both of my pregnancies.  They both listen to CDs at night to help them settle to sleep and we almost always have a CD playing in the car, even for the shortest of journeys.  I maintain that there is a song for every occasion and have been known to coax M out of the darkest of moods by my rendition of any song that springs to mind, often with a slight change to the lyrics to suit the situation.

My biggest musical passion is, and always has been, singing.  Over the years I have had the opportunity and privilege to sing with some wonderfully talented musicians, from my competition-winning school choir to the history-making Cathedral choir and many more along the way.  I have sung with women-only choirs as well as mixed voices and have had the heady experience of performing on my own in addition to singing with groups that have varied in size from less than 10 to over 200.

choir

My current choir is a wonderful group of anywhere between 10 and 20 ladies, who meet weekly to share our love of music.  Each Tuesday I abandon Mike and the children for an hour’s worth of music, laughter and the most amazing friendships I could imagine.  This group of ladies bring a smile to my face without fail and this week’s rehearsal found me giggling so hard that I couldn’t get any semblance of a note out of my mouth.  I was transported away from the week’s dramas with M and instead could just enjoy some time without that pressure overwhelming me.  No matter what the song, we have a great time and it’s been a pleasure to see the choir grow over the last couple of years.  Sometimes the lyrics of the songs really strike a chord and help me express something I had no idea how else to explain.  At our recent concert, one of the other choirs performing sang the song “There’s a hero” by Billy Gilman which really spoke to me of our journey with M and how I feel about our family.  If you don’t know this song, you can listen to it here.

 

 

Lemon Meringue Pie with a twist

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fathers dayCelebrating Fathers’ Day last weekend meant attempting to create Mike’s all-time favourite dessert, Lemon Meringue Pie.  I’ve found it difficult to make a good M-friendly pastry in the past and I wasn’t sure I wanted to struggle with it again, so instead I took inspiration from Mike’s other favourite pudding, cheesecake and decided to create my “pie” with a biscuit base.  I whipped up a double batch of my digestive biscuits recipe, pressed it into a greased springform cake tin and popped it into the oven for about 25 minutes.

Once this was in the oven, I scoured the internet looking for an allergy-friendly lemon meringue recipe that I could adapt, if necessary, to suit us all.  I found this great vegan recipe, which needed only the smallest of tweaks and set to making the lemon filling to put on top of the biscuit base.  I was lucky to have nearly all of the ingredients in my cupboard, though I had to use gelatin instead of agar to set the filling and here I nearly failed.  I had no idea of how much gelatin to add, so I added an amount that seemed reasonable for what I was making and kept my fingers crossed that it would all work out.  The good news is that 2 (and a bit) sachets of powdered gelatin set the filling enough to create the layer I was looking for, but trust me, it was certainly more luck than judgement.  Next time I will try more as I think it really needs to be a firmer layer.

lemonmeringue

This is what I was aiming for…

Base baked, filling added and sitting in the fridge to chill for a couple of hours, I came to the final, and possibly the hardest, part of my Lemon meringue challenge – the meringue topping itself.   I have successfully made small egg-free meringues before, but I wasn’t convinced that that recipe would work as the topping for a pie.  Instead, I decided to attempt the meringue mix suggested on the vegan recipe I was following as it seemed easy enough and I had enough egg replacement powder in the cupboard to give it a whirl.  It all started well, but I then added the rest of the water needed and things started to go horribly wrong. What I really should have done was stop there and start again, but I foolishly thought I’d attempt to rescue the gloop I was holding and added more sugar and egg replacement until I reached the consistency I thought I was after.  You can find my adapted recipe here.

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…this is what I got!

I doubtfully poured the meringue mix on top of the chilled base and put it in the oven, with everything crossed for a good result.  The recommended baking time was nowhere near long enough and I ended up leaving it in for a whole hour.  The end result?  Well, Mike and the kids kindly said it was delicious and for a first attempt, I would agree that it wasn’t too bad. However, it was not up to my exacting standards and I will definitely be trying this one out again with a few more tweaks along the way as I attempt to bake the perfect M-friendly lemon meringue pie.

 

Rainy days and Mondays

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I suspect we must be like every other family when it comes to unexpected free time or the need to find rainy day activities.  We have lots of discussions about what we could do, followed by M complaining that “there’s nothing to do” or “I’m bored” or “you won’t let me do what I want anyway, so there’s no point in asking” and eventually finishing with a decision that at least 3 of the 4 of us agree on, sometimes, if we’re lucky.  This past weekend was no exception.  Amazingly, there was no football training or game for M, no parties for either child and no school events to contend with as it was the start of the May half-term.

20140428_130100Chalk Wall Snakes & Ladders – this was invented by M and Mike and has been the source of hours of fun for all the family.  One wall of M’s bedroom is painted with blue chalkboard paint and they decided to create a gigantic Snakes & Ladders board on the wall.  It featured some individual-looking snakes as well as ladders of varying lengths and can be changed and adapted as the fancy takes M.  Once designed, they played the game using a dice and coloured chalk to mark their progress on the board.

bananagramsBoard games – I doubt we’re the only family in the world to indulge in a board game or 2 on a weekend afternoon.  The kids have been obsessed with two games recently: the Game of Life: Fame edition, where you’re a fledgling celebrity trying to make it big; and Bananagrams, a game that’s similar to scrabble, but each player works individually to create a crossword grid from their tiles.  The latter has become a new and firm favourite in the household, although M struggles sometimes with the challenge of creating words from his letters.  Even though he won’t always play on his own, he is always more than happy to give suggestions to anyone else playing.

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Egg painting – this is an activity usually associated with Easter as the photos show, but I see no reason why you couldn’t do this at any time of the year.  M was fascinated in seeing how exactly you blew the eggs, whilst G quickly learnt just how delicate the resultant egg-shells were.  They were occupied for a good half an hour or so before they had had enough and had run out of eggs to decorate.  G decided to go for 3 unrelated designs for her eggs, whilst M themed his eggs around a Matador, bull and red cape – don’t ask me, I have no idea where he gets his ideas from, though I’m guessing it must be something to do with his father.  Mike identified the eggs from 3,300 miles away via Skype:  I can only assume he saw something I didn’t.

lightsabersLight Saber battles – nothing overly original, though G, M and Mike appear to have created their own battleground, almost Hunger Games style, called “Schwing Schwang”.  This involves each having their own Light Saber of different colours and indulging in a series of highly complex fight moves as well as striking what I can only describe as their best battle poses. This is all accompanied by hysterical giggling from G and ear-piercing shrieks from M.

spacehopperWashing Line volley ball – This offering is an alternative to regular volley ball.  It involves the use of the washing line strung up between the garage and house, a space-hopper and a sense of humour.  We played in teams, had 5 lives each and had to catch and throw the space-hopper from side to side without dropping it or letting it bounce out of the poorly indicated boundary lines. Challenging, but great fun for a sunny afternoon.

popcornFamily film night (or morning, or afternoon) – Finally, there’s sometimes nothing to beat sitting down as a family to watch a film together.  Our biggest problem was agreeing on which to film to watch, with M and G inevitably choosing the same 5 films over and over again, whilst any suggestion from Mike or me to watch something different usually ended in tears.  So, I came up with a rota system that keeps everyone happy and has seen the children enjoying some films that they never thought they’d like.  Now we take it turns to choose the film and no one film is allowed to be chosen again until we have worked through everybody’s turn twice.  I drew up a grid on a piece of paper that lives near the TV and faithfully record who has chosen the film and what it was.  So far we’ve enjoyed a mixture of Disney, Pixar and classic films and would be hard pressed to say which has been our favourite.

 

And now, the end is here…

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Today marks the end of an important week for our family.  It’s been an interesting week of sharing more about life with EGID with friends and colleagues as well as reminding ourselves of just how tough it can be to follow M’s restricted diet.  I’m not usually a snacker, but this week, perhaps because it hasn’t been easy to just go to the cupboard and grab a handful of whatever I’ve fancied, I’ve wanted to snack at the drop of the hat.  Even with our cupboards and fridge full of M-friendly foods, the options for breakfasts, lunches and snacks are incredibly limited and I’ve found myself returning to the same things, time and time again because there really is no choice.

This week, a fellow EGID and FABED Mum put together this amazing video to mark National Eosinophil Awareness Week, which includes some of the brave children we’ve had the privilege of getting to know during our journey to get a diagnosis for M.  Some of you may already have seen it – the statistics suggest it has already been viewed over 9,000 time through the social media – but take a look again: these are the faces of children and families who battle EGID on a daily basis. These are children like M and families like ours:

One day left to go in our mission to “eat like M” for the week and perhaps the hardest food challenge of all…a BBQ social at a friend’s house!

M

Me

Mike
Breakfast
  • Bowl of free-from rice pops
  • Maple syrup
  • Rice milk
  • Toast (1/2)
  • Peanut butter
  •  Rice flour toast (2 slices)
  • Peanut butter
  • Rice flour toast (2 slices)
  • Rice milk
Lunch
  • Bruschetta made with:
  • 4 slices rice flour toast
  • Tuna, corn, cucumber & egg free mayonnaise
  • Mackarel


  • Apple (1/2)
  • Pear (1/2)

 
  • Bruschetta made with:
  • 2 slices rice flour toast
  • Tuna, corn, cucumber & egg free mayonnaise
  • Mackarel


  • Pear (1/2)

 
  • Bruschetta made with:
  • 2 slices rice flour toast
  • Tuna, corn, cucumber & egg free mayonnaise
  • Mackarel


  • Apple (1/2)
  • Pear (1/2)


 
Dinner
  • Baked sweet potato
  • M&S Venison sausages (2.5)
  • Olives
  • Pistachio nuts
  • Carrot cake cupcake
  • Sainsburys Free-from sausages (1.5)
  • Sweet potato
  • Salad – lettuce, cucumber, tomato, avocado
  • Baked sweet potato
  • M&S Venison sausages (3.5)
  • Green salad
  • Banana
  • Nectarine
Snacks
  • Nakd cocoa orange date bar
  • Fruit buttons (lemon)

Lessons about the Press

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My foray into the world of the local press over the last week has taught me some interesting life lessons.  Last week was all about my appearance on our local BBC radio station to talk about EGID, National Eosinophilic Awareness Week and baking for a child with multiple food allergies.  I had some great feedback from people who’d listened to what I had to say and thoroughly enjoyed the experience.  The pros were all about getting that message out there and raising some much needed awareness about this rare condition. The cons were that I didn’t know what I was going to be asked beforehand as it was all completely unscripted and so missed giving some information that would, in my opinion, have made the interview even better.

Today an article featuring our family appeared in our local paper.  The interview hadn’t been the easiest as I took the phone-call at work and could be spotted standing on one leg about 10 feet from the front of the office, with my left hand raised in the air in a vain attempt to get a decent enough signal to be heard at the other end – well maybe not really, but you get the picture!  I don’t find explaining EGID the easiest thing in the world when sitting face to face with the person asking the question: there’s a tendency for the individual to begin to glaze over, right up until I mention that M struggles with multiple food allergies as part of his condition.  At that point, their interest sparks up again as everybody inevitably knows somebody who can’t eat wheat/gluten/dairy* (*delete as appropriate).  Now, imagine trying to discuss a rare and virtually unknown condition over the idiosyncrasies of the mobile phone network – nigh on impossible.

NST (2)

However, despite it all, I’m not disappointed with the article that was written.  Okay, so the headline was misleading given our actual aim is to raise some much needed awareness about EGID rather than food allergies, but the reporter did include lots of important and accurate information.  I was delighted that she included some words about FABED, without whom I doubt I’d have found the confidence to even approach the press to report about M, as this was the bit that was missing from my radio interview on Friday.  To my delight, the paper has also agreed to run a small follow-up piece next week about our fundraising efforts this week and report how much money we have managed to raise for FABED.  That will be my opportunity to include FABED’s website details and to encourage our community to consider supporting this worthy cause.

feetup

With all the excitement of 2 appearances in the local press within the space of a week, this media mogul decided she needed a break of the mundane task of family dinner and instead tonight’s menu was courtesy of Mike:

 

M

Me

Mike
Breakfast
  • Home-made bread (1 slice) with free-from spread
  •  Sliced pear
 Bowl of:

  • Free-from cornflakes
  • Rice milk
Lunch
  • Sesame snaps
  • Fruit buttons (blackcurrant)
  • Chocolate cupcake (1/3)
  • Home-made rice bread (1 slice)

 
  • Sakata rice crackers (6)
  • Cucumber
  • Celery
  • Peanut butter

 
  •  Brazil nut & sultana cereal bar (2)
  • Mango fruit smoothie
  • Apple
Dinner
  • 2x home-made rice bread (toasted)
  • Baked beans
  • Pears (1/4)

 
  • Taco shells (4)
  • Home-made chicken satay (chicken, onion, garlic, courgette, mushrooms, tomato, peanut butter, coconut cream, chilli flakes)
  • Home-made coleslaw (red cabbage, carrot, onion, egg-free mayonnaise)
  • Taco shells (4)
  • Home-made chicken satay (chicken, onion, garlic, courgette, mushrooms, tomato, peanut butter, coconut cream, chilli flakes)
  • Home-made coleslaw (red cabbage, carrot, onion, egg-free mayonnaise)
Snacks
  • Sliced pear (1/4)
  • Nakd cocoa orange date bar
  • Dried apricots (3)
  • Sakata rice crackers (2)
  • Peanut butter
  

 

 

An early start to Awareness week

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local_radio_graphicNational Eosinophilic Awareness Week started today, but my bid to raise awareness of this rare condition in fact started on Friday afternoon.  Last year, Mike and I looked to raise awareness amongst our work colleagues, so my plans for this year obviously had to be bigger and better and I started by e-mailing the local press to see if anyone would be interested in running our story.  To my delight, late last Wednesday I was invited to appear on our local BBC radio station to talk about M, EGID and coping with the daily battles we have to face, including cooking for a child with multiple food allergies.  I accepted the offer and Friday afternoon saw me heading into the BBC building with a batch of freshly baked M-friendly cupcakes to share with the presenter and other guests.

 

10348778_10152049176741123_2166202480088495019_oThe cakes were well received, even by the security guards, who were keen to find out more about why I was bringing the cakes into the studio and enjoyed the M-friendly treats I left with them after the show. It was an amazing experience and I can’t thank our local radio enough for giving me the opportunity to get the message about EGID out into our community.  I was able to share, both on and off air, a little about the challenges those of us living with EGID have to deal with and the prognosis for M and children like him.

But, our Awareness week activities don’t stop there.  This time last year, I wrote about our decision to “eat like M” during the week:  one year on and we’re repeating the experience, although we have the added challenge of dropping raisins, raspberries and potatoes out of the diet too.  Actually, this isn’t as tough for me as it is for Mike – I’m not a big fan of raisins and can’t eat potatoes at all due to my own intolerance to them.  We have some more awareness-raising events planned for the week ahead, but for now, I’ll leave you with our meals for the day:

M

Me

Mike
Breakfast
  •  Sliced pear
 Bowl of:

  • Free-from cornflakes
  • Free=from rice pops
  • Rice milk
Lunch
  • Roast chicken
  • Sweet potato wedges
  • Corn
  • Peas
  • Carrots
  • Roast parsnips
  • Really not dairy mayonnaise


  • Roast chicken
  • Sweet potato wedges
  • Corn
  • Peas
  • Carrots
  • Roast parsnips
  • Really not dairy garlic mayonnaise
Dinner
  • Rice bread toast (2)
  • Peanut butter
  • Orgran tinned spaghetti
  • Apple (1/2)
  • Cucumber

 
  • Corn tortilla chips
  • Home-made tomato salsa (Tinned tomatoes, onion, garlic, chilli flakes, chilli powder, olives, corn)
  • Home-made cucumber raita (coconut cream, chopped cucumber, chilli flakes)
  • Corn tortilla chips
  • Home-made tomato salsa (Tinned tomatoes, onion, garlic, chilli flakes, chilli powder, olives, corn)
  • Home-made cucumber raita (coconut cream, chopped cucumber, chilli flakes)

 
Snacks

 

  
  •  Dried apricots

Our Girl done good!

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I’m delighted to say that we found out today that G passed her Grade 1 Clarinet exam with flying colours.  Despite nerves and a few last minute panic-stricken tears, she performed well and though she would have liked to do better, I’m proud that she did so well on her first attempt.

Well done G!

Mothers’ Day Wishes

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flowersmum

After a busy, but beautiful day spent with my Mum, Mike and my 2 wonderful children, this is just a short message to wish all Mums out there a very special Mothers’ Day.  Today has been a day to celebrate the joy of motherhood and perhaps even forget, for a few hours at least, the tough times that inevitably arrive too.  Whilst it’s not Mothers’ Day in Canada until May, we send heartfelt Mothers’ Day wishes to my mother-in-law, A, today.

mothersday

My Mum has been my rock over the last 10 years and has travelled every step of our journey with us.  She has been irreplaceable, offering support in whatever way we’ve needed it – making trips to London for hospital appointments when Mike hasn’t been able to; looking after G on the numerous hospital visits and stays we make each year; and giving Mike and me a much-needed break from time to time too.  She’s always there, holding my hand and offering emotional support when things get difficult and she’s certainly not afraid to offer some straight-talking advice whenever she feels it’s necessary.

Mum, I just want to say a big thank you and I love you very much.

What a performance!

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honkM’s love for the performing arts is something I can really relate to, having spent most of my formative years loving nothing more than singing, dancing and acting whenever possible. Both he and G regularly attend our local Stagecoach theatre school and have not only grown in confidence, but have also developed skills that will stand them in good stead in whatever career path they choose to follow.  G is not a natural performer, but her continued hard work, dedication and determination to be the best she can, has seen her win the lead role of “Ugly” in this term’s performance of the musical, “Honk”.  This isn’t a musical I’m familiar with and I’m looking forward to seeing the chosen extract in a few weeks’ time with my daughter in the starring role.  If her enthusiasm is anything to go by, it will be a fantastic experience.

G has also been spending time focusing on her clarinet and has two big events coming up over the next few months.  The first takes place at the end of March and that’s her Grade 1 clarinet exam.  She has been practising at home as well as at school and I delighted that she is confident enough to take the exam.  Secondly, she is once again performing in our local education authority’s music concert, which brings together instrumentalists from across the county to perform at a local music venue.  She loved doing it last year and is looking forward to playing in it soon.  G has had several pieces of music to learn for these occasions, but she’s determined to perform well at both and is working hard at perfecting the music as best she can.

Courtesy of swanwickhall.derbyshire.sch.uk

Courtesy of swanwickhall.derbyshire.sch.uk

M, on the other hand, was born to be on the stage and demonstrates a natural flair and understanding for direction in his classes.  He loves to take any and every opportunity to perform that comes his way.  It provides him with a focus away from his ill-health and he has had to develop a stamina to perform, no matter how his body is behaving.  After all, as we all know, “the show must go on“.  M is passionate about the stage and would love nothing more than a career on it; but he is also surprisingly realistic that not everyone can succeed and has talked extensively about what other opportunities the theatre could offer him in the future.

Over the last few months, two amazing opportunities have come M’s way and it’s been great to see him keen and able to make the most of both of them.  The first was offered by the Ellen Kent Opera Company, who were looking for child extras to be part of two operas they were performing at our local theatre and approached M’s Stagecoach school to find them. M was, unsurprisingly, desperate to be involved and was selected as 1 of 4 children who would perform a special dance during the performance of Aida.  He had 5 half-hour training sessions to learn the routine and the small group then had just one run through on stage with the orchestra on the evening of the performance itself.  We were nervous as to how M would cope with the extra rehearsals, his nerves and the stamina required, especially given how poorly he was in the run up to Christmas; but we needn’t have worried.

IMG_2334

Like the consummate professional he aspires to become, M worked hard, remained focused and gave a fantastic performance on the night.  The prospect of dancing on a “real” stage in front of a full house (approx. 2,000 people) didn’t phase him at all and we were all so proud to see him shine.  He stayed true to his character of a child slave in Ancient Egypt throughout his time on stage and Mike, my Mum and I all commented that we have never seen him remain so still and so focused for so long in his life.  It was our first experience of opera and we all enjoyed it, even G, who has asked to go and see another one in the future.

oliverIn contrast to this professional production, M has also been working on a local am-dram production of hit musical, “Oliver!”.  He is playing the part of “Nipper”, the cheeky youngest member of Fagin’s Gang, a part that, quite frankly, was made for him.  He takes part in every rehearsal with gusto, even though there have been occasions when he has been crying in pain less than 2 hours earlier.  I am amazed at how much M’s determination to succeed in this role has over-ridden any feelings of pain and discomfort that have been haunting him earlier in the day.  He has picked up the songs and dance routines quickly and now, as the final few weeks of rehearsals are ahead, he’s working on perfecting them as much as possible.

I am so proud of both our young performers and am looking forward to watching them doing something that they so obviously enjoy over the next few weeks.