Monday 23 December 2013

Season's Greetings

Christmas is nearly upon us! I have one more day left in work then it's feet fully up for the festive period – as much as three children will allow anyway! We really look forward to this valuable family time together and will never take it for granted as we think back to Rosie's first Christmas spent in hospital.

Rosie has been getting herself in the festive spirit by playing the part of an Angel in a 'mini' Nativity play at one of the local toddler groups she attends. Needless to say we thought she looked adorable sat with her friends, dressed in a white cloak and tinsel halo. I was really proud at how she managed to keep the tinsel on her head for most of the performance whilst staying relatively still too.

The last couple of weeks haven't been without mischief either as Rosie decided to go on one of her exploratory missions to the kitchen where Karen found her emptying the contents of a box of powdery cereal all over herself and the floor! I was at work at the time and received a picture message of the mess saying, "Look what I've been doing Daddy".  I couldn't help but laugh, her 'caught in the act' face is just brilliant. As no real harm was done and the mess was already made Karen decided to let her play in it for a while which she thoroughly enjoyed!

Rosie has also been busy developing her vocabulary and yesterday added word number 10 to her slowly but surely increasing portfolio. It's with great pride and embarrassment that I can unveil word number ten as (drum roll please)...


She was sat on my knee merrily trumping away (*note to self, avoid sprouts in Bud's Christmas dinner) when I said, "Rosie will you please stop making those Bum noises!" to which she replied, as clear as day with, "Bum". I couldn't help chuckling (bad Dad alert!) and because it raised a laugh she kept saying it – with much encouragement from her cheeky brother Joe! Typically of all the ten words she can now say it's the one that she pronounces the clearest! I'm hoping a lack of encouragement will put it out of her mind for a while.

Bud's vocabulary so far:

1. Addy / DadDad (Daddy)
2. Mum-ah (Mummy)
3. Ba ba (Bye Bye)
4. Nu nigh (Night Night)
5. Leh Low (Hello)
6. Ess (Yes)
7. Oh (No)
8. Layna (Helena – [her best bud])
9. Dod (Dog)
10. Bum.

On a less embarrassing note the year has ended on a very proud high after I was interviewed by TOTS 100 for a special feature they have been running throughout December celebrating five inspirational parent bloggers of 2013. It was a genuine surprise to be asked and a real honour to be included.

Some of you may recall a post from March titled, 'Bionic Boy' written about our friends little boy who was cruelly taken from the world far too soon. Well yesterday would have been his second birthday and we were extremely privileged to be amongst their guests at a wonderful celebratory party packed full of family and friends – all of whom have been touched and continue to be inspired by their wonderful son, Harry.

I urge you to read this beautiful letter written to Harry on his second Birthday by proud dad Ian. I cannot begin to imagine the pain and daily battles parents must face when losing a child and I'm in awe of Ian's ability to convey his feelings into words: Happy Birthday Harry

As this is likely to be the final post this year I'd like to take the opportunity in not only wishing you all a very Happy Christmas and 2014 but also thanking you for all your support. It's been a fantastic year for the blog and the accolades received really couldn't have been achieved without your help. I hope you will continue to enjoy following Rosie and her progress next year.

Wednesday 4 December 2013

Free Fallin'

Those of you that have followed the blog from the start will know how much Rosie loves the Tom Petty tune 'Freefallin' (see The Tom Petty Effect). It has become a firm favourite of hers since we discovered at about 11 months old the calming influence it has on her whenever she's upset. Rosie regularly listens to it and has become so familiar with the tune that on Sunday she decided to have a crack at singing along to it. The video is really cute to watch but more importantly it shows another sign of progress – okay, if you didn't hear the tune in the background you wouldn't understand what she's singing and to many it will just sound like random babbling but she knows exactly when the chorus kicks in and seems to sing in time to the verses. It felt like quite a big step forward in her speech and I couldn't help feeling really proud listening to her sing along.

I mentioned at the end of my last post (with regards to getting onto her feet) how Rosie will do things when SHE is ready and how SHE wants. Well as expected she hadn't shown any further interest since getting the new shoes – that was until a couple of days ago when we discovered her, unaided, pushing her weight onto her feet, sticking her bum in the air and balancing on her head. It's difficult to explain but I got a quick snap (below) that I hope will help visualise it! We've never seen her do this before and can only assume it's her way of experimenting with balance whilst developing confidence to get upright. Maybe the next stage will be onto hands and feet then (hopefully) eventually fully upright. Knowing Rosie she'll never do it again but it has happened three or four times so we can always hope!

I've also included a poster below which I created with the hope it might help towards shifting some common misconceptions associated with Down's syndrome. If you like the poster please do not hesitate to lift it from the page and share as you wish on Facebook and Twitter etc.

Free Fallin' from SwissBaldItalic on Vimeo.

Thursday 21 November 2013


I'm happy to report that during my short break from writing on here Rosie has remained on top form. She's had us in fits of laughter, surprised us with some new achievements and pulled on the old heart strings with acts of ridiculous cuteness.

Recently one of Harry's football team mates, Ben, kindly bought a new teddy for Rosie and it's quickly become her favourite cuddly toy. The moment she received the bear she was smiling, chatting to and hugging it. It's never far from her side and she seems to enjoying mothering him. Just the other day Karen was in the kitchen getting Rosie's lunch ready when she noticed everything had gone quiet in the living room. Rosie usually follows Karen when she's busy, bum shuffling after her in a determined manner, shouting until she has mummy's undivided attention – so the silence was all the more suspicious. Karen went to investigate and discovered Rosie emptying the entire contents of our 'cram everything into' draw all over the living room floor – all to make a special home for her new teddy, which she carefully laid down and 'tucked in' with a (clean!) nappy for a blanket. The pics below show the 'chaos' along with her reaction at being caught in the act. The hanging head in pretend shame being a particular favourite.

This week has also seen the arrival of Bud's new boots. She's finally out grown the previous pair, not that we didn't like them but they are so small and it's taken her an age to out-grow them. The new ones look huge on her but we're hoping the wider base on the sole will offer more stability and encourage her to stand up for longer. She's still very hit and miss with leg strength – one minute she gives us the impression she wants to try and master standing and the next minute she just plonks herself down on her bum showing no interest again for a few days (even with our constant encouragement). We shall keep persevering but we are quickly learning that Rosie does things when Rosie is ready and not a moment before.

Friday 1 November 2013

A little R&R

I've always promised myself not to write blog posts for the sake of it as I feel it will affect the integrity of what I do, however I am mindful that I haven't written for a while and wanted to explain where I'm at...

Rosie hasn't done a great deal to report of late and truth be told I'm just not feeling motivated enough at the moment for a number of different reasons.

I've done a few bits of media work lately which has been fantastic exposure and a tremendous platform for illustrating to more and more people how life with Rosie really isn't all that different and certainly nothing to fear. However that has also eaten into valuable time for doing what I enjoy the most – being a Dad to my three wonderful children.

I've also read an increasing amount of Blogs, Facebook updates and twitter messages which have left me feeling a bit deflated and in some cases a tad disillusioned.

The next post may come tomorrow, it may not be until next month but I just wanted to keep you updated – I'm not going away just yet! But for now I simply want to enjoy some time with my family and regroup – a little rest and recuperation if you like.

'Friday photo' shall resume as usual for the time being over on The Future's Rosie Facebook page.

Thank you as always for all of your continued support.

Tom & Rosie xx

Wednesday 9 October 2013

Singing in the train...

As Autumn tries its hardest to keep everyone smiling with the late Sun so does our Budlington! We have been away the past two weekends trying our best to string out the good weather and spend some quality family time together.

First off we tagged onto the back of Karen's parents holiday for a weekend in the beautiful Snowdonia National Park. We stayed in a lovely old cottage which offered a great new environment for Rosie to explore. She enjoyed shuffling around, getting to know her surroundings and pinching the odd novel from the bookshelf! The cottage had a couple of steps, one down from the kitchen and one down into a conservatory – this became a bit of an issue for Rosie and we'd keep catching her shuffling up to the step, pondering, then lowering one leg over at a time to test the distance – this is one of the first times we've seen her show caution which is a promising sign for any parent of a seemingly fearless child! At one point however, Grandad did find her in the conservatory and we have no idea how she made that manoeuvre – thankfully there were no tears although when we encouraged her to try again she wasn't interested. Getting up the step offered a different challenge altogether and although she didn't achieve it we watched as she tried several times to work out the best route. She put one leg on the step then realised that wasn't a feasible option, leaned over onto it but wasn't sure what to do next then she turned around reversed up to it and tried to bump herself high enough to bounce her bum up! We did try encouraging and helping her but seeing as she doesn't front crawl at all it was never going to be easy.

The highlight of the weekend came when we took a trip on an old steam train and Rosie sang to the whole carriage – I've included a short clip of this in the video below.

The singing carried on into the next weekend where Rosie entertained and (most likely) woke up fellow campers as we braved the October weather to go on our first camping weekend as a family. Thankfully Rosie took to it like a duck to water and slept quite happily both nights right through! We had my sister and her family there on standby next to us with their plush caravan just incase it got too cold for her but she was fine. Rosie enjoyed being made a fuss of by her cousins who offered her plenty of cuddles and different hairstyles!

Singing-in-the-train from SwissBaldItalic on Vimeo.

Tuesday 24 September 2013

MAD Night

I'm stepping slightly out of my comfort zone here as it's not my usual post about Rosie and her achievements, it may also be my longest post ever so bear with me!

Friday 20th September was the annual MAD Blog Awards held at the really rather posh (but friendly) Royal Garden Hotel in Kensington. What can I say... Wow what an amazing night! In fact the whole lead up to the evening has been a great experience. I feel honoured to have been on the 2013 finalists ride which has left me well and truly spoiled.

Those close to me will know I was really anxious about the prospect of being in a room full of extremely talented writers and in the case of the 'Outstanding Contribution' finalists – amazing selfless people who give up so much of their own time in order to help support and campaign for so many others.

So there I am all suited and booted in my very swanky hotel room trying to pluck up the courage to leave for the champagne reception where I was led to believe the women outnumbered the men about 20 to one! Eventually I 'manned up' and strolled out with confidence, I'd been through the scenario in my head 100 times in the weeks leading up to tonight. I entered the lift, composed myself, took deep breaths and as the doors opened I strolled out with a swagger so uncharacteristic my wife would have either been gobsmacked or in stitches (I think the latter). I was happy with 'new me' and strolled into the bar ready to take on the world....but wait...where was everyone? It was almost empty... wrong bar!  New confident Tom bolted for the nearest exit and I was left with old me scratching my head at how I'd already made a fool of myself without even meeting anyone!

Having not been to anything like this in the blogging community before my biggest fear was not knowing who was who and offending people as they introduce themselves and I look blankly (this didn't materialise thankfully).

Once I finally found where the reception was (it wasn't complicated it was just usual silly me) I immediately bumped into Hannah (Mama Bear With Me) who I had met very briefly at the Legoland day out. She made me feel at ease instantly as we raced through the champagne and although this was the only occasion we chatted on the night I feel I made my first blogging friend from outside the Down's syndrome blog community. Thank you Hannah for saving me from the dreaded billy no mates look I was inevitably about to sport.

I was (to the envy of most of the female guests) placed on a dinner table with our host for the evening, Dr Ranj (of CBeebies fame). Amazingly a tiny window appeared where he wasn't surrounded by swooning women and I took the opportunity to introduce myself. Discovering he is a fully qualified doctor of medicine I spoke to him about the often negative way news of a Down's syndrome diagnosis is delivered to new parents, like our case where the consultant tried to steer us towards terminating our pregnancy with Rosie. It was really interesting to hear the 'off the record' opinions of a professional doctor and whilst he wasn't surprised by our story he certainly appeared in favour of bringing change to the way news is broken and immediate after care. It was a real pleasure to meet him and I'm grateful for his genuine interest in my story with Rosie.

So to the awards...

I couldn't believe it when The Future's Rosie was read out as the winner of 'Best New Blog', especially in light of the quality blogs I was proudly sitting amongst. As soon as I got on the stage to accept the award I immediately realised why I'm not in a job that involves public speaking. I was stunned into silence. In my head (as I think back) I'm almost sure what I said made no sense and went along the lines of, "Erm [nervous chuckle], voted, erm thanks, Rosie, nominated, Thanks"

Now with the benefit of hindsight I wish I'd managed to say something that at the very least made sense, it might have been something like:

"I'm actually still pinching myself that I am here tonight at all, let alone stood here collecting an award.

Thank you to every single one of you that nominated and voted for The Future's Rosie.

Thank you to Sally and the MADS team, Parentdish and all the sponsors that put on such a great night.

Thank you to John Lewis for providing me with a personal shopping experience and sponsoring my suit and for Anna (JL Cheadle branch) for making me look vaguely presentable for a change.

Thank you to everyone who reads, shares, supports and recommends my blog to those who might find it offers genuine support and hope.

Thanks to my friends and family, my sons and amazing wife – who is very much in the background of all that is in the public domain with TFR. She is my constant rock, the person who listens, who tells me to keep going in the frequent times I want to throw the towel in and stop writing. I love you babe.

I reserve my biggest thanks of course to my little Bud, Rosie, for changing the way I see the world and for giving me the inspiration and confidence to start writing – the ability to put my deepest feelings down and share them with the world without a care for how it might effect my 'alpha male' status. Rosie I love you, I can't ever find the words to express just how much and I wouldn't change a single thing about you."

....on second thoughts that might have been a bit long winded for an acceptance speech?!

Blog of the year went to the very deserving Mammy Woo. I was extremely touched that she gave a mention to TFR in her acceptance speech before dedicating the award to Jennie at Edspire, who was the deserved winner of the 'Outstanding Contribution' category. Please read her inspirational blog here to find out just why.

All the 2013 finalists and winners are listed here.

Tuesday 17 September 2013

She's still standing...yeah yeah yeah!

This coming Thursday see's the second anniversary of Rosie's life saving open heart surgery at Alder Hey Children's Hospital. It's always hard emotionally thinking back to that time. Equally it's vital that I don't allow the experience to become nothing more than a distant memory – such was the importance of the operation, without which we wouldn't be able to celebrate all her amazing achievements. Last year, on the first anniversary we received a lovely card from our friends Amy, Ian & Ella which simply said, 'Happy Heart Day' – I've always loved that and shall remember the day with this phrase each year.

You can read my account of the whole experience here: Rosie's surgery

So back to 'today's' Budlington...
It's usually the case that Rosie will achieve something new, I'll excitedly write a post about it then she'll not do it again for months. However, on this occasion I'm really pleased to say that since my last post, Rosie is still going strong learning to stand up and strengthen her legs. I'm very proud of her efforts which in turn are pushing my fears of her never walking further away each day. There is such a long way to go yet but here we are a couple of weeks on and the novelty is yet to wear off!

She's still standing...yeah yeah yeah!

From here... here in just under two years! Our little hero.

Sunday 1 September 2013


Just a quick post with some new achievements in the land of Budlington! There have been three significant advances since I last wrote.

In a recent post I mentioned about Rosie learning to throw and catch in the garden…well Karen has been encouraging her to go a step further by introducing speech into the play by saying , 'Ready, steady, go!' In the past week or so Rosie has begun to repeat it back before she throws the ball which is brilliant. Okay so she can't exactly say the words but she is making the right noises, it's more 'Eddie, teddy, dooooooe!' but its great progress all the same. The first video below shows her in full action.

After months of receiving cuts and scratches from Rosie clawing at our faces I think we've finally broken through to the other side and her quick grabbing has turned to a much more affectionate stroke of the cheek whilst saying, 'Ahhhhhh' and giggling. We still get the odd swipe after but it's certainly getting less and less – it's one of the few things she's learned that we'll be glad to see the back of! We may well be entering a biting phase but for now we're happy to see a positive change!

Finally and maybe the best of the lot, last week saw a major breakthrough in an area of Rosie's development that causes me a lot of anxiety. The fact she's very hyper mobile (over flexible joints due to low muscle tone) means getting her to stand up unaided is taking an awful lot of time and effort with very few signs of progress… until now. Karen had placed Rosie in her cot whilst she went for a shower and when she returned she saw Rosie pulling herself up and poking her head over, managing to stand upright for a few seconds at a time. Her legs weren't perfectly straight and her feet required the side of the cot to push up against but she tried and she succeeded which was a moment of huge joy for us. Karen encouraged her to carry on and caught the moment in the video below. She has an awful long way to go before she is even attempting to walk but this has given us real hope that with constant support and exercise we may just be able to take a step further to believing it will happen one day.

Ready...Steady...Go! from SwissBaldItalic on Vimeo.

Get up stand up from SwissBaldItalic on Vimeo.

Tuesday 20 August 2013

Cornwall, chums and chips

It only takes a day or so back in work before the holidays dreamt of all year become a distant memory. We've had a wonderful time visiting beautiful Cornwall, bringing back with us some cherished memories of days out exploring and splashing about in the sea. We hired a lovely little cottage where we stayed with family, 'Aunty Ruth and Uncle Daniel'. I love the time a holiday gives you to reflect and unwind but also that valuable (well mostly valuable!) time you get being around the kids.

We couldn't travel all the way to Cornwall and miss a chance to meet up with Hayley (Downs Side Up). We have met twice before at organised events and our children get on so well. Hayley, Bob, Mia and Natty welcomed us to their home and we adults enjoyed having time to chat openly with one another whilst the kids occupied themselves – previous meets have been a bit hectic so this was the first time we had an opportunity to relax. We talked about all sorts, laughed a lot and shared some very personal experiences of the ups and downs of our DS journeys so far. Natty and Rosie spent some time playing shops, or rather Natty played shops whilst Rosie played throw the shopping over her shoulder! Natty is a joy to be around and her speech is superb – very inspirational for Karen and I to see the possibilities for Rosie. We know every child is different and will reach goals at different times, some will achieve things others won't – same as their peers, however Natty is a true example of how a families love, care and belief can trample over those initial fears and so called obstacles we're led to believe are true in the early days of a Down's syndrome diagnosis. I came away from that day with such positive feelings for Rosie, oh and a recommendation for Britain's best chippy too! Thank you to 'Family Down's Side Up' for a wonderful start to our holiday.

We treated ourselves to that chippy tea one evening and needless to say the fish and chips were amazing but what struck me more was just how at ease I felt in there. We sat in the restaurant area packed full of people of all ages, those that looked at Rosie were clearly doing so because she was being ever so cute, laughing and babbling away and not because she 'looked different', it was genuine cooing from the public and the staff alike. As Rosie is still relatively young and unable to walk she is often in public in a pushchair, I guess making her less visible than if she was running about. As a result of this I'm still learning to grow my thick skin and get a bit anxious about the inquisitive sometimes baffled looking 'stares' because up to now they have been fairly few and far between. Don't get me wrong I'm extremely proud of Rosie and wouldn't ever hide her away, I guess that's evident in this very public blog but I'm also not immune to feeling that pain now and then from those that stare – nobody likes to be gawped at no matter how thick skinned they are. Well this particular moment felt great, there she was on full display for all to see and not a moments awkwardness. Cornwall made us feel extremely welcome the whole time and I couldn't help but smile to myself as I felt another little moment of 'up yours' flying in the direction of a certain 'anti disabled' (former) councillor who claimed to represent the good people of Cornwall.

Wednesday 14 August 2013

Super Bud!

I'm extremely honoured to have been asked by Mencap to write this post as part of their annual awareness-raising campaign for Learning Disability Week. This year it is taking place from 19–25 August 2013 and will celebrate people with a learning disability, their families and supporters by asking the question;

Who is your real-life superhero?

This is actually a tougher question than it would first appear, I'm inspired by people everywhere, so many of those are people with special educational needs, each one worthy of the title 'real life super hero' in my opinion. I especially get a lot of hope and inspiration from those who are further ahead in their wonderful life than my little Bud. One such person is Sarah Gordy, a professional actress who happens to have DS. Sarah is a great role-model and a true example of how a person with special educational needs can achieve success and independence, blowing away any ignorant pre-conceived ideas I might have had myself before Rosie was born.

I was fortunate enough to meet up with Sarah. Like many, I've met or seen one or two famous people over the years but I can honestly say the first person to leave me genuinely start struck was Sarah. Her intelligence and charisma left me lost for words. We were at a private opening of a photography exhibition where I had a camera shoved in front of me and was asked to say a few words about the exhibits on display – rather embarrassingly I crumbled on the spot and was left standing there internally screaming for the world to swallow me up! Swiftly moving on the interviewer asked Sarah if she would mind saying a few words – I watched in total awe as she composed herself, stood in front of the camera and spoke so elegantly without a single drop of fear – putting my efforts to shame!

This was a big moment that taught me a great deal about how I see people with Down's syndrome. As I think back to that evening, I realise that I just saw someone standing there doing a far better job of being put on the spot than myself - I didn't stop to think this was a young lady with Down's syndrome showing me how it's done. I thank Sarah for (unknowingly) giving me this important moment in my life which made me look beyond DS and truly see the person.

Other heroes I see daily are all the wonderful adults with DS in full or part time paid jobs providing a genuine service to people and proving to any doubters their worth in society.

I seem to be gathering a 'team' of Super heroes, however every team needs a leader so if I HAD to choose one person then it must be my little Rosie Bud. Not only is she the apple of my eye but she has been my real life superhero from the very beginning. You might think ‘how can a two year old be a super hero to a grown man?' It’s quite simple really.. all I have to do is think back to Rosie’s first year where she endured more than I have ever had to in my entire life. Rosie underwent open heart surgery at the age of six months for a complete AVSD repair. You can read about that experience from my perspective here: Rosie's Surgery

There is also the fact that this little two year old (with her special powers of course) has managed to adjust my outlook on life and really changed the way I see the world - I've been around for 30 something years now and I'm almost sure she's the only person to have had such a major positive effect in such a short space of time.

Below is a 'letter of love' I wrote to Rosie on Valentines Day this year which I hope will explain just how her super special heroic powers have helped me and continue to inspire me everyday:

Dear Rosie,

I've never been one for writing, in fact rarely do I even make time to read, but then you came along and brought out a side in me I never knew existed. Without your inspiration I would never have known this joy of being able to share my love and affection for something so pure, so innocent and so beautiful – that 'something' my dear is you. See I started writing my blog because the feelings I had when I first learned of your extra special chromosome were so very new to me, I felt a little bit frightened at times to be honest because I didn't really know anything about Down's syndrome and the special powers its given you. There were also feelings of overwhelming protection (those ones will never ever go away) and all this before I had even laid eyes on you. Then you came into my life and changed it forever and for the better too. I wanted to let others know how your extra little chromosome is nothing to be afraid of, how very precious you are, how you have this amazing ability to make everyone smile, how you have fulfilled (over and above) my dream of adding a daughter to our wonderful family.

I consider myself a very lucky Daddy – so proud I am that I sit here writing my feelings down without being afraid to tell everyone, you may learn when you're older that it's not always the easiest thing for a man to do, but with you by my side I don't really worry about that anymore. You have taught me so much about myself, brought out a confidence in me that has been hiding away for years. 

I won't ever be able to thank you enough for all you have done for me, all that you have taught and continue to teach me, BUT I can promise to do everything within my ability to raise, protect and help you realise any dreams you may have for the future. You see Rosie, contrary to what some people may think or even sometimes say, you can (and most likely will) achieve anything you want to.

All my love.
Daddy. xxx

Rosie not only brings abundant joy to our family with her cute, witty and very mischievous ways but also to thousands of others who look forward to her bringing their weekend in with a smile every Friday on her dedicated Facebook page
I can also be found rambling away on twitter under the name @FuturesRosie

Why not get involved by sharing your story on Twitter, post on Facebook, write a blog or post a photo, using #LDWeek13.

You can also learn more about Mencap's Learning Disability Week campaign for 2013 here:

Sunday 21 July 2013

Terribl(y cute) twos!

Well summer has well and truly arrived and with all this hot weather drying everything up my blog has been no exception! I'm happy to report its nothing other than being a lover of the summer sun. I've been spending every minute I can outdoors trying to maximise time with the kids, which in turn has left little time to write (priorities and all that!)

Rosie is now fully recovered from her op and is certainly making this clear whilst developing a new diva side to her cheeky character.

We've become accustomed to putting common age related 'milestones' aside and have got used to seeing Rosie for who she is, happily achieving things in her own time... With this and her cheeky happy nature in mind we'd completely overlooked the possibility of a 'terrible two's' phase!

One thing we've never experienced (until now) with Bud are those dreaded bedtime battles. Up until this last couple of weeks we've been the envy of our friends with similar aged children as bedtimes with Rosie would consist of milk, a short story, take her up to bed, lay her down with a kiss goodnight and bingo...she'd be asleep within minutes! This happened practically every night without fail regardless of where we were staying too – this girl is a total breeze we thought...

It's a very different story now however. If she's not going all rigid and screaming as soon as she's within sight of her bedroom she's clinging onto us for dear life (whilst laughing) as we try and lower her into her bed. Either way as soon as she is lay on her mattress all hell breaks loose as she screams and cries for our attention. It wouldn't be so bad to leave her for a few minutes but her brothers are right next door and are kept awake as a result – they are like us and don't like to hear her cries, so can often be found in her room trying to comfort her. The moment we step back into her bedroom she stops, sometimes giggles but more commonly starts happily babbling away to us. On one particular night we decided to let her cry for a little while in the hope she'd get tired and just drop off – but no, this girl has willpower! So I went into her room, put on her favourite Tom Petty tunes, lay on the floor next to her cot and held her hand. She lay there totally still looking straight into my eyes with a sleepy, happy, contented smile that quite literally melted my heart. It was such a sweet and special moment I felt helpless to cut it short, so we lay there for about half an hour gazing at each other until she eventually dropped off. As with most things I like to try and find a positive from a negative situation and this is a definite bonus to her new terrible twos phase!

I've included a few recent photos taken at a sensory play centre whilst at Rosie's friend, Lottie's birthday party and a couple of shots playing throw and catch – something she's been developing whilst enjoying garden time.

Wednesday 26 June 2013

Major Day Out, Minor Surgery

I don't know whether I'm coming or going at the moment and I've been meaning to write a post for ages, so I've finally grabbed myself some timeout to write...

On Sunday 16th we were kindly invited to enjoy a day out at Legoland Windsor by the very generous folks at MAD Awards. We travelled down the day before and treated ourselves to a rare family sleepover in a hotel. Trying to get Budlington to sleep with us all in the same room was quite a challenge especially with her brothers being so hyper-excited, but we did eventually succeed!

We were really spoiled on the day and given the full VIP treatment including access to the park before the gates opened to the public. There was a special preview of the new 4D film, 'Chima' which was just brilliant (full water proofs recommended!) and each family received special wristbands which allowed us to jump right to the front of the queue on any ride! I felt a tad guilty at first strolling to the front and hopping straight on the rides but it really enabled us to get the most out of the park and we had a fantastic family day that we'll all treasure forever. Rosie is too young to understand of course but the boys had a riot – the highlight for me came when we shot down the water drop on the Pirate Falls ride and Joe screamed out, "THIS IS THE BEST DAY OF MY LIFE!"

Two days later and we were brought back down to earth with a bump as Rosie went into Royal Manchester Children's Hospital to have her tonsils and adenoids removed. We've always known it's a minor operation, certainly by comparison to what she endured with heart surgery, however both Karen and I were extremely anxious – not only for the op itself but all the questions that were spinning around our heads:
  • Will her tiny mended heart be able to cope?
  • Will she have an adverse reaction to the anaesthetic?
  • How will they get the intravenous line put in her when she kicks and shouts just being put down on the bed for a check-up?
We were reassured Rosie was in the best hands when told that she would only be operated on if a bed becomes available on the High Dependency Unit (HDU). It's not that she would need it necessarily but it was good knowing they had taken this precautionary measure as a result of her health record.

I took her down to theatre for the anaesthetic on the Wednesday morning – selfishly nervous of the memories it would bring back from Alder Hey. I really surprised myself by holding it together and Rosie was extremely well behaved. The anaethetists were fantastic at keeping her calm and they put her to sleep with gas before inserting the intravenous line so she felt no pain. I did allow myself some wobble time when I got back on the ward (it was hayfever honest!). I've learned from our stints in hospital with Rosie to accept that it does me no harm to let go sometimes, I find it easier to deal with things after getting it out the way rather than trying desperately all day to keep it in. The thing I really struggle with is seeing Rosie gazing at me with such trusting eyes and it feels like I'm damaging our bond by not protecting her. It's so silly I know as she won't remember and obviously it's being cruel to be kind but it's how I felt both times I've taken her to theatre.

The op lasted just over an hour and we're told everything went well – they decided to leave her adenoids in so just the tonsils were removed in the end.

Only one parent is allowed into the recovery room so Karen went through to be with her as she came round. The first thing she did as she woke up completely melts my heart – she looked into Mummy's eyes and did the Makaton signing for 'More to Eat'. She has done this sign before but this is the first time she has instigated the communication away from when we're teaching her. A very special moment for Mummy and Rosie to share.

Thankfully she came straight onto the ward with no need for HDU. I was sat by her empty cot waiting when she was wheeled onto the ward. She saw me and gave me the most wonderful smile – I'm not exactly sure what I was expecting when I saw her but so soon after surgery it certainly wasn't that! All my daft worries of tarnishing our bond had been erased in that one moment.

When they transferred her from the bed to her cot she immediately sat upright giggling, laughing and chatting away – that's when the picture below was taken.

Rosie was kept in overnight as a precaution and discharged the following morning. We were told the first couple of days would be easier for Rosie, then as everything begins to heal it gradually becomes more uncomfortable. Which is where we are right now. She's had a few restless nights and her stubborn streak is making it very difficult to administer the pain relief. Karen has even ended up with Calpol in her eyes!

To end the post on a happy note, below is a video of Bud busting some shapes at her cousins disco party (pre-op of course!).

Rosie Disco Dancer from SwissBaldItalic on Vimeo.