A letter of love to my baby girl

Today is the first anniversary of The Futures Rosie. I had wondered how best to mark the occasion. Perhaps I would write a recap of the year, highlighting the major moments? Maybe do a photo montage of the best bits? I couldn't ignore the fact it fell on Valentines Day so settled on writing a letter of love to my Budlington explaining my reasons for starting The Futures Rosie and thanking her for inspiring me to do so. I'd also like to thank each and every one of you for your continued support this past year, it really is your encouragement and willingness to share that brings the blog to the attention of those that can benefit from reading about Rosie (thinking back to myself as an anxious parent two years ago).

A letter of love to my baby girl...

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

Ten Little Monkeys

It's been another busy couple of weeks since I last wrote a post, it has been 'exciting busy' though with the stand out highlight seeing Rosie doing a spot of modelling for the award winning Kids Fashion Boutique Ten Little Monkeys in Wilmslow, Cheshire. The pictures will be used on their website and possibly in-store too to help promote the new seasons range.

The whole thing came about via a Facebook comment a few months back. Emma, co-owner of Ten Little Monkey's, is an old friend of mine from school and as is so often the case these days we have kept in contact through Facebook. Emma had made a comment on a picture I posted of Bud, remarking on how beautiful she was. I returned a jokey message saying "maybe she should come and model for your shop one day :) ..." Emma responded with "yeah why not? I'm all for that!" I was taken aback a little at first and then thought about how exciting an opportunity this could really be in the promotion of inclusion and raising positive awareness. As many of you will already know this is already happening with the likes of M&S, Frugi, JoJo Maman Bebe, Boden, Next, Weird Fish, The Eden Project and Eureka Museum etc all including children with DS in their advertising and without making a big song and dance about it either which is why I take the opinion that it's genuine inclusion and not exploitation. It is a fine line granted and as a parent you ask yourself these questions over and over but I feel it is a real positive leap forward.

I was encouraged by recent conversations where I'd asked people if they had seen Seb, the little boy in the M&S Christmas advert who has Down's syndrome – many of responses were, "yes I've seen the advert but I didn't notice a boy with Down's syndrome?"... That right there is huge progress, the kind  that needs building on and I don't just mean inclusion of people with Down's syndrome I'm talking every aspect of disABILITY, we need to continue the fabulous work already being done by the likes of beautiful Natty G and the fantastic exposure and legacy left by the London Paralympics to stand a chance of permanently changing the way we as a society view disABILITY.

The shoot itself went really well, Emma made us feel instantly at ease and was so good with Rosie throughout the session, which lasted about an hour. We received the first pics a couple of days ago for us to approve and we couldn't be happier. In a couple of the shots I noticed Rosie's tongue sticking out and for a moment was foolishly concerned that this wouldn't be ideal for promoting inclusion, a little flashback to my own pre-Rosie ignorance raising its head perhaps...Anyway I mentioned it to Emma and this was her response:

"I didn't mind her tongue being out as I like that it captures her. I like all of the images and am happy to use any as it is who she is. I'm about people looking like they actually do look. For me the DS is part of what makes her her and I don't see any negative connotations to this. That said I won't use them if you don't like them but I think she looks lovely in all of them. totally your call."

I still get a bit emotional when people see Rosie for who she is and not a diagnosis and Emma's response above was no exception.

I have included the shortlist of shots below with the kind permission of Ten Little Monkeys. Please do take the time to visit their website to see their wonderful collections, Rosie's pictures will be making an appearance in the next week or so.

www.tenlittlemonkeys.co.uk

www.facebook.com/tenlittlemonkeys

New Toys New Achievements

It's been a while since the last post about Rosie as I've been wrapped up in the festivities and the more recent not-so-exciting return to work. I did contemplate sharing a post about our Christmas but decided I would keep this one to myself, it was such a special time for us celebrating altogether for the first time and truth be told I'd struggle to do it justice with my basic writing skills!

Having been thoroughly spoiled by everyone, the year started with plenty of new toys for Rosie which in turn has brought fresh challenges. One of her favourites is a drum – she loves the sound of the banging and puts a lot of effort into ensuring a good contact is made thus maximising our headaches! It's quite a large drum in comparison to Rosie and requires her to be sat slightly higher which ties in perfectly with the chair/stool supplied by her physio before Christmas. The movement used to bang the drum so energetically from a seated position means she's putting extra weight on the top of her legs and using muscles to counter balance without really realising. Playing with the drum has also shown a mini step forward in her co-ordination as she now manages to hold and hammer both drumsticks without dropping them.

I'm not sure how best to describe the next toy other than calling it a 'helter skelter giraffe type thingy'. The idea is to pick up the different coloured balls and place them in the Giraffe's mouth and watch them spin around it's neck back to the bottom whilst it makes one of those noises that only childrens toys can, you know – the type that drives you crazy after two goes. After much brotherly encouragement she is now able to pick up the balls and place them unaided into the giraffe's mouth. and quite rightly gives herself a clap at the end too!

Watching the three of them play together is brilliant and it's moments like these I really treasure knowing they won't last forever. I realise it's no revelation but Rosie, as with many younger siblings really does pick things up quicker with the boys encouragement as she loves to copy them.

Finally and arguably her most treasured gift was (brace yourselves for this because toys don't get much more exciting)...

...a silver scouring pad!

A tad random I know, however Karen had taken her to a sensory session once and within the box of items to explore was one of these and she absolutely loved it, it sparkles and has a rough texture which keeps her entertained for ages and will stand her in good stead for when she's old enough to wash the pots!

Finally, I have included a short video clip which provides evidence of our brilliant Bud becoming independently mobile. This is a remarkable step/shuffle for Rosie who has proven very lazy in her previous attempts to move, the only time of note was an attempted crawl backwards ages ago which she never did again plus the more recent encounter with the Christmas tree which also proved to be a one-off. This weekend however Rosie began to bounce a little at first and kept trying until the bounce became a shuffle and now there's no stopping her as she realises those items previously out of reach are now there for the taking!

Highs, Challenges and Hopes

This post forms part of a Blog Link and aims to answer three questions asked by Hayley at Downs Side Up...I said I'd have a crack at answering them so here goes... (Please bear in mind my answers will be relative to my life with Rosie and as a new blogger. Lets face it I'm sure you're not that interested in who I hope will win the Premiership this season or that I fulfilled a dream to finally see the Stone Roses play live!).


1) What was the high point of 2012 for you?

This is a very tough question! There have been SO many highs this year that to pinpoint one seems unfair to all the others. For starters every single new achievement of Rosie's has been so exciting we've celebrated them all with such immense pride.

Finally plucking up the courage to write my feelings down and start The Futures Rosie back in February has been a major positive too, without which I probably wouldn't have the contact I do now with a whole world of wonderful and inspirational people.

There's also the amazing moment we were told that Rosie's brothers (unbeknown to us) had stood up in front of the whole School and presented a talk about Down's syndrome. Read more here: Blown Away

Then there was the incredible moment my Mum (65), Sister and I, hand-in-hand crossed the finish line as team 'Running for Rosie' at the Manchester 10k. A huge final total of £4113.61 was raised for The Down's Syndrome Association and RMHC Alder Hey. Read more here: Running for Rosie 10k

As Christmas 2011 was spent in hospital with Rosie I think it would only be fair to say the ultimate high point for 2012 came when we finally spent our first Christmas altogether as a family at home (words simply cannot describe this feeling).


2) When was the most challenging thing, the part that tested you to your limit?

The year has been pretty kind to us on the whole so nothing has tested me to the limit as such. The third and longest stint in hospital for Rosie back in April became tough as it felt like a disruption too far for the boys, but complaining about hospital stays doesn't seem appropriate especially when there are people in far worse situations than we've ever been.

I did however find a very negative comment written about one of my positive awareness campaign posters particularly hard to deal with. I've had one or two comments from trolls before on pictures of Rosie that have been quite nasty but managed to rise above them. The comment on the poster however came from a parent of an older child with DS and deemed the poster 'dangerous' and 'unhelpful'. I don't want to dwell on it though as I did eventually overcome what was written after advise and reasoning by several close friends.


3) What 3 hopes do you hold dear for 2013?

1. That Rosie's recent run of good health remains.
2. That the groundbreaking positive awareness achieved in 2012 by everyone doesn't go to waste and can continue into 2013 with the same momentum.
3. If by continuing to write about my life with Rosie into 2013 can offer any form of support, comfort or hope to even just one new parent of a baby with DS then I'll be happy.

Wishing you all a very Happy 2013!

Happy Christmas!

It's been quite an end to the year, far more exciting than this time last year when Christmas was spent in hospital. My concerns have shifted now from whether Rosie will be well enough to spend her first Christmas at home to whether I will manage to get my presents sorted in time! Obviously I prefer the latter worry and my heart really goes out to those who will be spending Christmas on a ward.

The first bit of excitement came in the form of our first magazine interview. It is an open and honest insight into our life with Rosie from the beginning and features as part of a really positive three page article about DS in Elite Magazine. If you fancy a read you can download a pdf copy for free by clicking here... (it may take a short while to load depending on your internet speed).

The other bit of excitement came (rather bizarrely you may think) by the slow destruction of our tree decorations!

On Wednesday night Karen, Nanny and the boys headed over to Buxton Opera House to watch my really rather talented niece performing in Pantomime. This mean't the Bud and I got to spend some valuable uninterrupted time together. I had, sorry I mean 'she' had loads of fun playing with her toys, we had lots of laughter from tickles as well as endless amounts of cuddles. She was also rather taken with a 'Christmas present' hat that Karen had made for Joe, she would pop it on her head and laugh away to herself whilst peeping out at me.

It was soon time for tea and so I placed her in the middle of the living room floor (out of harms way) then rushed into the kitchen to heat up her 'pre-prepared by Mum' tea. I popped my head back in the room to check she was okay only to find her sat by the Christmas tree happily pulling down the lights and baubles! Unsure whether to tell her off or applaud her I moved her away slightly to assess the damage (after taking photo's of course!) and immediately she leaned forward, arms outstretched and shuffled on her bum back to the tree. She has managed to move around on her bum before but this is the first time to our knowledge that she has shuffled with any purpose. At this point I decided a round of applause and a great big cuddle was in order!

There are lots of potentially exciting things in the pipeline for next year which I'm having to bite my tongue about, but for now I intend to down tools and stay away from the computer (as best I can) and enjoy every second of our first family Christmas altogether at home.

Thank you to each and everyone of you that continue to read and share my ramblings, I have been truly humbled by every single comment sent, both here and on our Facebook page. I wish you all a very Happy Christmas and a wonderful New Year.

xx

Daddy!

Saturday morning delivered the most perfect start to the weekend for me – considering I was about to spend the majority of it decorating!

I was sat playing with the kids on the living room floor, both my sons vying for my attention telling me different things at the same time, when amidst the chaos the Buds little voice says, "Daddy" and reaches out to touch my face. She immediately won the battle for my attention and gave me a little knowing smile – my heart did a little summersault.

Rosie has been saying "Dadda" and "Daddad" for a few weeks now but never has she said "Daddy" with that all important 'eeee' sound on the end. I was so excited I shared the news to TFR Facebook page. I tried every trick I could think of to try and get her to repeat it (which of course she didn't) and as the weekend progressed without even a 'Dadda' I began to feel cheated and a bit of a fraud! Especially in light of all the lovely comments I'd received earlier in the day too. Sunday evening came and I had to face up to the fact it may well have been a fluke after all...

I came home from work last night (Monday) hoping my absence all day might have triggered an excited shout of "Daddy" – no such luck! However I was told by an enthused Karen and Harry that Rosie had been giving them kisses!

Obviously she doesn't go short of kisses herself and we've been trying to encourage her by saying kiss kiss and exaggerating the action, however she hasn't (to our knowledge) ever reciprocated until now. Karen duely demonstrated by asking her for kisses and Rosie leaned in to gently touch Mummy's face with her lips.

I couldn't wait to receive my first Budlington kiss so I quickly picked her up, sat her on my lap, asked for 'kisses' then closed my eyes in anticipation of her soft little baby lips pressing against mine... What I actually received was a slap followed by a couple of sharp grabs to my face! I made a sad face and for the first time pretended to cry by rubbing my eyes, she put her head on my chest for a hug then quickly looked up at me with her bottom lip quivering (at which point I felt truly awful for pretending to cry) then she gave me the longest cuddle.

After a minute or so she raised her head, looked up at me with those big brown eyes and said, "Daddy" then leaned in and gave me that kiss.

Stand up routine!

This weekend we were honoured to have been invited to Rosie's friend Ella's 2nd birthday party. We had a fantastic time meeting Ellas family and seeing other parents and children from our local DS support group. I'm often unable to attend the monthly group meetings due to Saturday morning football commitments with my Sons so I really appreciated the opportunity to sit down and catch up within the intimate surroundings of Amy and Ian's lovely new house.

Read more about Ella and her big day over on her Mummy's blog 'A Different View'.

Since Rosie's birth we have been lucky enough to meet some amazing parents of children with DS and we owe a great deal of thanks to our local support group for this. In the early days Karen gained alot from the monthly group meetings – chatting and exchanging experiences with other parents and she soon had regular contact with many of the Mums during the week, meeting for coffee etc. In truth I never felt so at ease the first couple of times – I must point out this is in no way reflective of the group or its people, far from it in fact, this was my issue. I found it really overwhelming walking into a room full of children with DS and their parents, I guess it stemmed from the realisation that hit me when I first walked into the room that Rosie was a part of something 'different'. Little did I know at the time that the 'different' I feared slightly was soon to become the most positive life enriching experience I could have ever imagined. I now really look forward to the meetings (when I'm able to attend) and am really excited for the forth coming Christmas party!

Rosie's latest developmental aid from the physio is a rather barbaric looking standing brace. It resembles some kind of Victorian straight jacket for the legs! Needless to say she isn't overly impressed by it, although to be fair being strapped into something like this wouldn't be my idea of fun either. However, she is being so lazy at the moment, showing no signs of wanting to crawl or support herself that we're adamant to persevere with it!

We tried a new tactic at the weekend where Rosie's brothers stood on the sofa and blew bubbles down over her – She loves watching the boys, so coupled with the bubbles it was the perfect distraction from the fact she was strapped to this brutal contraption. The bubbles also encouraged her to reach up too – making her legs work to support her upper body without her really realising.

The boys efforts (and ours) were rewarded with a late night snuggled up in front of a film eating copious amounts of homemade pop corn!