Harry was really excited to be going into Peppa Pig world.  He loves Peppa and George, has all the toys and loves rides so he was jumping up and down with excitement!  It was very hard to pick the first ride to go on in Peppa Pig world, however, the first ride we went on was Windy Castle where you sat in a balloon and were swung up and down which was very fun.  Harry liked hearing the voices from the Peppa Pig TV show and when we were up high we got a great view of the park.

About a minute after we had finished on the ride we went and saw Peppa and George pig.  Harry gave Peppa a kiss and Archie said hiya to Peppa while we all played in the park which was very fun for all of us.  After we had finished in the park and Archie had finished his excited, repeated hiyas to Peppa we went and rode on the dinosaurs before we went into the proper main park.

The first ride we went on then was the Jumping Bean, which goes up and down and makes your stomach feel incredibly strange, which we all loved!  We then went on the pirate ship and Sam sat at the very back (thrill seeker) before sitting down and having our lunch. I couldn’t believe how the time had passed so quickly!!!  After we had finished eating we went on some of the other rides before splitting up while Ollie, Sam and Daddy went on a roller coaster me, Mummy, Harry and Archie went on some more calmer rides.  After we met up again me, Mummy, Harry and Archie watched Ollie, Sam and Daddy as they went on a ride called Magma which is kind of like the Jumping Bean however it goes much higher and continuously rotates itself making you dizzy and excited at the same time!  I felt dizzy just watching them however you could see they were loving it.

Finally after we had gone on most of the rides we quickly went back to the Jumping Bean,did the Log Flume and finally finished off doing the Wave Runner where you flew into the air.   My favourite ride was probably the Sack races where you came down the slope as fast as a cheetah!  Daddy and Harry claimed they won but I did really.

What a brilliant day!!!

Thank you Nicki and Neil!!!!!

Today is World Down Syndrome Awareness Day.  The date for World Down Syndrome Awareness Day being the 21st day of the third month, selected to signify the uniqueness of the triplication of the 21st chromosome which causes Down syndrome  and so surprise, surprise today I am going to write about Down syndrome.  

When Archie was born, the diagnosis of Down syndrome weighed so heavily in my mind, at times I felt like I couldn’t breathe under the weight of it and for the first few weeks and to an extent for many months after, it was an all consuming part of my life as I came to terms with this tidal wave of emotions and what the diagnosis of Down syndrome might mean for Archie, for us as his parents, for our children and our wider family.  Today Down syndrome has found a comfortable space in my mind, in my family, in our home and in my heart.  That doesn’t mean that I am not frightened or afraid or that Down syndrome does not present challenges.  Sometimes I feel sad when I see how hard Archie has to work to stand up and control his hyper mobile ankles, how he struggles to make his mouth move to make the sounds we are working on , sometimes I wake up in the night worrying that he might be one of the ‘increased likelihood’ cases and sometimes I think about his life expectancy and how Archie might cope if I am not here by his side.  But mostly I just delight in Archie’s enthusiasm, his warmth, his cuddles, joy and spirit and his outstanding determination.

Through Archie I understand that life isn’t always easy and that some days are more challenging but that sometimes having to work a little bit harder brings huge rewards and cheer and so when we reach the smallest of goals we celebrate.  There are things in life that you choose and some things that you don’t think you want to choose because initially you are worried that you can’t cope, that you won’t do a good enough job, because you are scared by the unknown but through Archie I have learnt to believe in myself and truly appreciate the love of my husband, my children, my family and friends.  So today whilst also celebrating Down Syndrome Awareness Day and recognising the wonder in all of the hundreds of thousands of individuals in the world who have Down syndrome I also want to say thank you to all those people who don’t count chromosomes and see differences.  The people that see Archie and all that he brings to this world. These people truly accept Archie, praise him, wave enthusiastically to him, hi 5 him, cuddle, play peek a boo, help him when he is struggling and open their hearts and share in his joy when he does something new and recognise all the good he has to bring to the world and I feel so very grateful to these people who share and are part of his journey.  Thank you to each and everyone of you who celebrate and love my boy and make him feel loved and special.

So what does today mean to me?  I could write about all the facts I have learnt about Down syndrome, about low muscle tone, small stature, almond shaped eyes, how it is a naturally occurring chromosome abnormality caused by an error during cell division and explain all the terminology that I have read about and educated myself on over the last two years but that alone is not what makes me celebrate Down Syndrome Awareness Day.  To me this day means so much more.  It is about individuals and love, acceptance and awareness of the beauty in difference.  It means that I feel honoured to be the mother of a child who continues to stretch my perspective on life every day.  Through Archie my perspective has been changed and I see so much more of people than I ever did.  I feel more vulnerable, more caring, more sensitive, more empathetic, more capable, more inspired to make a difference and more aware to see the needs of others and to celebrate uniqueness.  Today is about compassion, understanding and embracing children and adults from all walks of life and with a variety of needs.  But most of all today I feel a fierce love, honour and overwhelming pride for my delightful, comical, sociable, spirited and determined boy who rocks that extra chromosome and spreads happiness with his infectious laugh where ever he goes.

Today is about celebrating Archie’s awesomeness, how his diagnosis has changed me forever and how he encourages me, most days without knowing it to be the best version of myself, for the struggles we have overcome, the roads we have paved and for facing the journey ahead with positivity and not letting my fears for the future take away from the joys of today.  Today is about hoping for a society which continues to spread the message of acceptance and inclusion. A society which cherishes and encourages all individuals to fulfil their potential without barriers and a society which sees Archie and the hundreds and thousands of people with Down syndrome and other needs, just as they are, beautiful people with potential and abilities and a bright future.  A society which recognises the beauty of differences

Happy World Down Syndrome Awareness Day.  Archie, you are so very loved and will get a few extra hugs and kisses today from us all. xxxxxx

So I must remember to cherish these moments of interruptions while they last, because my little boys will soon become big boys and before I know it my days will be calmer, quieter, less crazy and i will miss my interruptions.

Missing my interruptions today…

When you are exasperated by interruptions, try to remember that their very
frequency may indicate the value of your life. Only people who are full
of help and strength are burdened by other persons’ needs. The
interruptions which we chafe at are the credentials of our
indispensability. The greatest condemnation that anybody could incur -
and it is a danger to guard against – is to be so independent, so
unhelpful, that nobody ever interrupts us, and we are left comfortably alone.

-Anonymous
from The Anglican Digest.

Hoping everyone is enjoying their interruptions!

The boys have all grown in independence over the summer holiday and generally they are helpful and kind, responsible and respectful and are confident yet still unsure.  They’re sharpening their emotional voice and are loving and sensitive so mostly I feel quite confident and satisfied that they have the tools to rock out being at school or at pre school on their own.

However that doesn’t stop me from feeling a bit anxious for them and wanting the start of their school year to be special, perfect and stress free.  Their uniforms are perfectly ironed with their name tags all in and for the first day they will have a special packed lunch and we will arrive for school early and I will be waiting eagerly at the end of the school day with a big smile on my face.  This is my way of trying to pack them full of confidence, bravery and love from us at home, enough love to make them feel secure, happy and confident in their new situations.

I have told each one of them to be yourself because you are amazing and I have reminded them to work hard, have fun and be nice to people.  I hope they have fun and inspiring teachers and that they grow in their depth and understanding of the world and that they become more considerate and compassionate, logical and imaginative.  But most of all I just wish them a happy school year with their friends because I know one thing for sure if they are happy everything else should just fall into place.

So tomorrow Jamie, Ollie and Sam will cross over with Mike the lollipop man, go through the school gates and head off to their new classrooms and I will have a warm and genuine smile as I wave them off because they are all ready for their respective challenges.  Harry, Archie and I will then meet with friends and catch up on everyone’s news but we’ll then return home and it will be quieter and less chaotic and there will be less interruptions and I’ll realise once again how much I have enjoyed having all our boys around us.  Bring on the next holiday….

Good luck to all our friends and their children and our teacher friends who are starting or going back to school.  We wish you an amazing year full of fun!

In order to maintain some continuity and allow the learning curve to be visible, we’re putting the films up in the order that Hil edited them (because the first ones aren’t quite as accomplished as the later ones).  However, as you will see, her skills were pretty impressive to start with in the first place.  So, without further ado, Hil’s film number 1 – the journey down to the South coast of France, for Summer Holiday 2012.

It seemed by the look on Hil’s face that this was something worth being concerned by, however as I was not properly awake and in tune, I presumed it was a typical bump, the kind that Sam bounces back from on an hourly basis, and suggested we just wait a few minutes to see whether things calmed down.  When I actually looked at his arm, however, all seemed a little different.  It was probably the additional angle that had appeared in the limb at about the wrist zone that gave it away…

Cue ‘Operation Beziers hospital’, and an adventure in my pigeon French, bravery from Sam, concern from those left behind at the campsite and an absorption into the French medical system, which, I am delighted to say, was totally superb.  After improvising a sling from a piece of Hil’s clothing, organising our passports and E111’s and settling Sam with a pillow to further support his arm, I drove to the hospital and towards the A&E department, helpfully named Urgences, in red CAPITAL letters.

By the end of the first hour, Sam had been processed, admitted, inspected and x-rayed, with the diagnosis being a fairly clear one: he had broken and dislocated a bone in his arm, just above the wrist, and it was going to need an operation under general anesthetic to sort it out.  Which is what happened.  Vive la France!

While in the Urgences department, pain relief was sorted out and various cables and needles were attached or inserted in preparation for what was to come.  The most welcome of these medical pieces of apparatus was a monitor that was attached to the end of Sam’s finger with the purpose of measuring the concentration of oxygen he had in his bloodstream.  Sam, who had been a little down and subdued up to this point, saw this and became animated and full of life.  ‘Daddy!’ he shouted.  ‘I’ve got a laser gun on my finger!’  And then he proceeded to aim at various targets in the room and make ‘peyow’ noises.  Good stuff.

We were admitted to the paediatric ward while we waited, and Sam was unbelievable.  He had not eaten or drunk since the night before and had a horrible break in his arm.  Most 5 year old children would have been screaming the place down, however he was generally calmly composed and a little subdued.  There was one moment when he became very upset, but this was the exception and our little man’s character shone through.  Most of my enquiries regarding whether he would like to sit up a bit more, lie down more, have more blankets or less were met by the answer ‘It’s OK, Daddy,’ delivered in a tone that suggested more that he was looking after me than the other way round.

His only wobbles came when he spoke on the phone to Hilary – another adventure in itself as due to the loss of my phone earlier in the week (another story) I was unable to contact Hilary and update her.  Instead I had to ask one of the hospital staff to call the operator, who dialed the number for us and then I was put through on a hospital phone.  Again, all with kindness and willingness.  The French doctors and hospital staff were glorious and we are very grateful to them, in particular to a guy called Matthew, who it emerges was from North London and was working in this French hospital in order to care for his Dad who lived nearby.  There were a couple of crucial moments when he was able to translate for us, and it made the whole experience more bearable.

Anyway, back to Sam’s wobbles, which occurred after (and during) speaking with Hil on the phone, and were a window into the fortitude he was employing to bravely get through this alien situation during the rest of the time.  Generally, he was being strong and doing what he had to do to get through, but once he heard the voice of his Mum on the phone, he weakened and fell into her comforting voice, his voice cracking and uncertainty in his being, albeit temporarily.  Indeed, in the evening, while we were working out a way for the boys and Hil to come and visit Sam, he convinced himself on two occasions that he had heard Hil’s voice and that she was in the corridor.  Suffice to say, when he did eventually see her, he perked up no end and was buoyed tremendously.  He missed his family, particularly his mum, greatly.

So our little soldier was absorbed into the beating heart of the business end of a French hospital.   Sam was hooked up to a variety of machines that pumped, whirred, beeped and whistled, we signed consent forms (both Hilary and I had to sign, which involved an interesting game of ‘fax tennis’ between the campsite reception and the hospital at peak-campsite-booking-in-time) but the job was done, and I walked with Sam, and bunny (who was by his side through the whole operation) down to ‘The Bloc’ which we in England would know as the Operating Theatre.

A hairnet was put on Sam’s head, and then he was gone, and I was outside the airlock again, waiting for a nervous hour and a half before I heard the news and was allowed in to see a very sleepy and groggy Sam. The first thing he said to me when he started to come round, disorientated and a little confused was ‘Have they mended my bone?’

For those who like a bit of detail, the break was too hard to manually put back in place, so the doctor informed me that he had had to insert a pin in order to act as a lever to reset the bone properly.  Nice.  This meant there was a small incision, which was sorted with 1 dissolvable stitch, which was now hidden underneath the plastercast.  Very good, said the doctor.  I could have hugged him.

Seeing Sam in the recovery room, absolutely sparked out in plaster and helpless to the world was surprisingly emotional, although I generally believe that I am practical in that kind of circumstance, there was a good deal of emotion as well.  Lovely Sam.  Mind you, I remember feeling that way when Jamie had an operation when he was very young, and Archie with his gromits as well, so I suppose it should be no surprise.

As alluded to before, once the operation was complete and we were back in our room in the paediatric ward, apart from sleep, the main thing that Sam wished for was to see the rest of his family.  This was a little difficult as a. I had all the money, b. I had the only car, 3. I didn’t have a phone to contact them and IV. They were on a campsite 10 miles away.  However, in the end, the decision was taken that I would leave the hospital and travel the 40 minute journey to pick up Hil and the boys, before returning straight away (Sam also needed an overnight bag as he and I were to stay over for observation (him being observed, not me, you understand)) and it is a testament to Sam that we felt he was able to manage in this alien environment where people spoke a different language for almost an hour and a half on his own.  At the age of 5.  And cope he did, admirably.  What a boy.

As you can see, the visit was a big success, and when I took Hil and the boys back to the campsite, he was chuffed to bits to be allowed to watch ‘Gulliver’s Travels’ on the laptop.  As a reward for his brilliance, I also stopped at a drive through on the way back and bought some chicken nuggets, which we ate sitting on his bed along with watching the end of the film, making up the perfect end to the evening before he passed out sparko.

One of the joys of spending just over 24 hours in hospital with Sam alone was that I got to experience a little of how life is in his world – a rarity because at the moment I am often leaving for work when he wakes and returning as he goes to bed, or at other times it is him amongst the other four boys, which creates a different dynamic and conversational direction.  Sam on his own, however, is really quite delightful and unpredictable.  You never knew what piece of interaction or thought process was going to hit you next.  It was great.  Here are my favourite three moments (verbatim because I wrote them down) that we discussed or pondered during our time:

‘Daddy, if someone was asleep, and you pulled their eye out, would they be able to see you or not?’

‘Is there anyone who is really poor in our country and only eats bugs?’

‘Daddy, if you were food, would you want to be eaten or thrown into the rubbish bin?’  He then added ‘I’d be eaten because if you were thrown into the trash it would be really smelly’.

Gloriously, the next morning all was pronounced well, and we were permitted to leave.  We have been delighted to have Sam back at the campsite and apart from a couple of visits back to hospital for checkups and a disappointing embargo on going into the pool or sea, Sam is getting back to his old self.  One of the most delightful moments was when Hil and I heard his ‘dirty old man giggle’ when he was playing a game with Jamie and Ollie.  Our old boy was coming back.   The photo below is of Sam just after he was discharged from the hospital.  You can see his bedroom on the top floor, one in from the end room on the right.

I would also like to say well done to Jamie, Ollie, Harry, Archie and Hilary, who all played their parts and continue to do so to look after Sam.  It’s not what you look for on a holiday, however in some ways it has been a lovely family moment that has allowed us to remember what is important and understand again why we value each other so much.  Mostly, however, it’s just lovely to be a family together again.  Even if one of us is in plaster!  This is the scene that greeted us when we got back to the campsite – made up of shells that we had all collected from the beach on previous days.

P.S.  This post is tagged as a milestone because it is the first time that any of the boys have broken anything.  Sam is quite proud of that….

This is how today went according to my hipstamatic iPhone photos, minus photos of the beach trip and vide grenier trip because we’re on holiday and I forgot to take any….!!

More holiday stuff to follow…..but the wi-fi internet connection isn’t great so don’t hold your breath!  Hope everyone is enjoying their holiday too xx