Friday 21 December 2012

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.


Tuesday 4 December 2012


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.

Wednesday 28 November 2012

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!

Wednesday 14 November 2012


It gives me great pleasure and pride to announce that...

...we all survived our first full weekend without 'Mummy'!

Most of it was a complete blur to be honest, but as far as I'm aware, there were no major dramas to report – considering my usually forgetful and disorganised self this is nothing short of a miracle.

Rosie was as good as gold allowing me two good nights sleep with no wake ups – unless I just slept through them? Either way she was full of smiles in the morning so I assumed all was well. The boys were great too and really pulled their weight keeping the Bud entertained whilst I was busy rushing around not really achieving anything, making huge mountains out of jobs Karen completes everyday with me barely even noticing!

We finished off a hectic but fun weekend watching the boys marching proudly in the village Remembrance Day parade, allowing me the time to stop for a moment and reflect.

The Bud (but mostly me) really missed Karen and her return was rewarded by Rosie's first attempt at saying, 'Mamma'. Okay, so she wasn't neccesarily saying Mamma but we've been trying to encourage the 'mm' and 'umm' sounds for a while now, with little or no response. She's now achieved this which is fantastic – a real big step in her vocal development. I'm sure it won't be long before it becomes a definite pronunciation of 'Mummy'.

We've also discovered Rosie now has a favourite book called This Little Teddy, it's one of those 'touchy feely' ones with different textures and materials. She is particularly drawn towards 'Miranda the Giant Panda' and when the page is turned to reveal 'Miranda' she kicks her little dumpling legs with excitement and loves to stroke the ears!

Progress on the crawling front has slowed down and she seems uninterested again, we try to encourage her but she is becoming quite stubborn in her refusal. If she doesn't want to do something she makes no secret of the fact. We tried her again in the crawling position last night and she immediately lay flat on the floor and rolled over finishing without her trademark smile – which is the real telling sign that she's not happy about it! There are also times when we'll give her a toy or teddy to hold and if she doesn't want it she will take it and throw it behind her. The one thing we can guarantee she wont ever toss aside is my phone blasting out Tom Petty, so we're trying to encourage the crawling again using this as bait!

I had hoped she may have been crawling a little by Christmas (she still might) but as with everything it will be done in her own time and on her terms!

Sunday 28 October 2012

Mischief and Makaton

Having three kids usually means our house is a constant hive of manic activity and I rarely stop to notice the relationships building between siblings. This last couple of weeks however I have really seen such a big change in the way Rosie and Joe interact. If she starts crying he is the first one there to offer comfort. He will happily put his beloved train set aside to sit and play with her, they make each other proper belly laugh and its become apparent to me that their relationship will only continue to flourish as they cotton on that they share the same mischievous nature (already dreading the teenage years!)

Karen has started doing Makaton (signing) classes now and has been attempting to teach me a bit too, in fact its become quite fun and the boys seem to be embracing it too which is great. I was extremely proud of the new words I'd learned to sign and put them together to make the sentence, "Play ball outside with Daddy" – totally useless to Rosie as she can't even crawl yet! I have been persevering with "Daddy" though and it seems to be paying off as she attempts to do the sign by tapping her fingers to her hand and saying Dadda! I've tried to capture it in some pictures below.

Rosie had her first visit to the dentist last week and I'm happy to report they were pleased with her entire set of 'tooth' (a half sized one at that!). As odd as a visit to the dentist seems when your child only has one tooth it is reassuring to know there was no cause for concern around the gums etc. Below is a picture of the bud proudly showing of her first dentist's sticker!

Saturday saw Rosie getting her first flu jab and whilst I wasn't there at the time Karen tells me she was extremely brave and only cried for about 15 seconds. We were informed that she might be a bit grouchy but she didn't appear too bad throughout the day. She did wake up coughing that night though and couldn't settle herself so I took her back downstairs and sat her on my lap until the coughing calmed again. I really cannot remember the last time we shared such a long time cuddling as she is usually so lively, including bedtime. It's even more rare that she falls asleep on me – this time however, when the cough subsided she looked at me for a few seconds with those ridiculously cute big brown eyes of hers then placed her head on my chest and went back to the land of nod...such a special moment – I wish it could have lasted forever.

Thursday 11 October 2012

Stares and Slides

Since I last wrote Rosie's had a few unsettled nights waking with a cough, she's also constantly putting her hands in her mouth so we're pretty sure she's teething again. We're not overly concerned about the cough because it isn't affecting her in the daytime but we'll be keeping a close eye on it as the colder weather creeps back in, hoping we don't have a repeat of last winter where most of December (including Christmas) was spent in hospital with Bronchiolitis. When she does awake coughing it seems the only way to settle her is cuddles with Mummy. After 15 minutes Mummy time she's put back to bed and tends to remain calm for the rest of the night – I'm beginning to think she's employing 'stay up late' tactics as taught by her older brothers but I'll give her the benefit of the doubt for now!

We enjoyed a visit this weekend from some of the London branch of the family which was great. As the family expands and grows older it becomes increasingly harder to see each other, making the time we do spend together all the more valuable. We had a great time catching up and sharing stories of all the new things the kids are up to. Saturday was spent at a farm allowing all the kids to run riot in the huge play area. Although Rosie wasn't running around she still had loads of fun and even took a trip down the slide with Harry. After a few goes we decided to try her by herself (I held on of course), and after a cautious start she was soon whizzing down with her trade mark smile and giggling!

Today Rosie had a visit from her physio and they're really pleased with the progress she's making with her leg strength. Karen tells me she wasn't so keen to do much else though and when the physio put her into the crawling position she just planted her face into the carpet and refused to move – then gave 'that stare' which shows clear signs of a stubborn (but still cheeky) side developing. Rosie is becoming a bit of a master of facial expressions. Those of you that follow the Facebook page too will have seen I posted a picture of her 'get what I want' look and to follow that up I've included a picture below of her executing it perfectly on me...the little darling.

Sunday 30 September 2012

Budding Hairdresser

Well I promised a more positive post and I'm happy to say things are back to how they should be this time as it'll be all about Rosie rather than me and my silly wobbles! Thankfully she's provided me with plenty of positive ammunition!

First off is her advancement in copying – for a while we wondered if things were registering at all after many unsuccessful attempts to get her repeating things. Finally this week she made a real breakthrough. Karen was brushing Rosie's hair, then she handed the hairbrush to the Bud and she returned the favour, by gently brushing Karen's hair, taking great care not to hurt her in the process. To prove it wasn't a fluke she did it again (to show me) as I returned from work. I think we can now add hairdressing to the ever expanding list of possible career paths for the Budlington!

Rosie has also discovered how to move around a bit – for a couple of weeks she's been able to turn around full circle on the spot whilst on her bum – but just this last few days she has discovered how to shuffle backwards! I don't think it was intentional at first as she was aiming to grab my phone which was in front of her! However, her enthusiasm and excitement resulted in pushing herself backwards half way across the room! - I've tried to capture this in an animated file below (only thing missing is a bit of Benny Hill music!). The next day Karen had left Rosie in the middle of the living room floor whilst she went to open the front door to me (I'm forever forgetting my house keys) and when we entered the room we found her wedged under the bookcase! I didn't anticipate this day would come so soon where we have to keep a constant eye on her.

Rosie has also made an advancement on her sit ups (as mentioned a few weeks ago). She now grabs our fingers and pulls herself up into the seated position, we then raise our arms as she continues to hold on and lift her into an upright standing position which she holds for about 10 seconds. She can't balance herself yet but it's a big step forward seeing her lock her legs straight and allowing weight on them. Needless to say we are celebrating each of these achievements with her and are extremely proud of her continued efforts.

I'm signing off with a lovely message I have just this minute seen posted in the Rosie's Surgery page by the Grandmother of Elsie. If you saw my last post, 'I won't back down' you'll remember Elsie was the little girl about to have heart surgery:

Tom, I am so pleased to let you know that Elsie Mae had her heart surgery on Tuesday which was a great success. She came out of ICU on Wednesday and came home yesterday. The doctors and nurses at Alder Hey cannot be praised enough for their dedicated hard work and compassion. We have to take care in the way we lift Elsie and cuddle her because of the stitches but she is smiling and happy and doesnt appear to be in too much pain. These babies are stronger than they look and I am so proud of her, my Son and my Daughter-in-law. I hope Rosie is still thriving and keeping you on your toes. Take Care. (Very proud Grandma) 

Monday 17 September 2012

I won't back down

It's been a tough couple of weeks for me personally where I've began to question everything I'm doing, especially in light of all the negative media coverage that is surrounding Down's syndrome at the moment.

Life isn't easy for any of us at the best of times and weeks like this have taught me to accept that I won't be on top of everything all the time. For all the positivity I write about Rosie I am no exception to showing a bit of emotion now and then from the stresses and strains of trying to continue raising awareness. I found myself taking ten minutes out of work last week as I felt a 'wobble' on the horizon. I sat in the toilet, closed the door and (alpha males look away now)...blubbed like a baby, in truth it's been a long time coming. I know life isn't always 'Rosie' and I have to learn to allow myself these wobbles without feeling too guilty. Everytime I pulled myself together I visualised Rosie's face smiling at me like she does when I get home from work and it just set me off again.

I don't worry too much about Rosie herself (outside of the norm for any father and their daughter) or even wonder what might have been had she not had DS – my stresses and occasional tears are induced solely by the feeling of (for want of a better expression) 'pissing in the wind' in the fight to change perceptions. A fantastic blog post, "A mosquito in the room"  reflecting many of my recent thoughts, only in a more eloquent way from Hayley at Downs Side Up was just the war cry I needed to get back up, dust off and carry on.

I also received a wonderful anonymous comment from a grandparent on the Rosie's Surgery page just at the right moment to confirm why I need to continue. Anonymous if you are reading this my thoughts will be with your Son, his wife and little Elsie Mae on 24th.

Thank you to my ever supportive wife and rock Karen, Downs Side Up and 'Anonymous' for helping me out of this mini dip, I shall push on and continue to try and help the growing number of passionate parents out there fighting to change misconceptions forever and to drown out the weak, often illiterate but hurtful voice of the 'trolls' we find at almost every corner.

Wow, I feel so much better for that – if you're still reading this and haven't given up then thank you for listening!

Wednesday 19th September will see the one year anniversary of Rosie's heart surgery, oddly enough I feel more emotional about it now than I did last year – I'm guessing that's down to riding the wave and getting on with it at the time, but now almost one year on I can sit and reflect without the health worries to appreciate the magnitude of what little Rosie went through. As time goes on the surgery date will probably become like wedding anniversary's... some I'll remember some I'll likely forget! This one however is an important one on many levels – to celebrate the life that was saved that day but also to revisit the emotions with Karen – even let go if we need to as that wasn't so easy to do at the time whilst we attempted to remain strong for each other, the boys (and Rosie). It's my hope that after Wednesday I can finally put some closure on that chapter of Rosie's life and finally move on. If it is of interest (and you haven't already done so) you can read about my experience of Rosie's surgery by clicking HERE.

In the mean time I'll leave you with my favourite picture of Rosie which hopefully illustrates exactly why the fight for acceptance must go on – she is so darn cute it almost hurts! The picture has had an amazing response across internet communities with a worldwide reach. I hope you like too!

I also include a Johnny Cash rendition of the Tom Petty classic I won't back down which is lyrical perfection for my current state of mind.

Normal more positive service shall resume with the next post I promise :)

Tuesday 4 September 2012

Pride, super cuteness, laughter and cringe

No sooner am I writing to say there has been little to mention about Rosie's progress when she does so many new things in one week I don't know where to start!

The Bud has provided us with moments of pride, super cuteness, laughter and even cringe! I'm guessing Rosie won't be short of confidence when she's older if her antics at a recent family meal out are anything to go by. We sat and enjoyed our meals chatting to each other whilst Rosie babbled to her hands, however as the restaurant became busier Rosie increased the volume in her voice too but always that one notch higher than everyone else, by the end she had us in stitches shouting out at the top of her voice, making herself heard to anyone who would listen, which happened to be most of the restaurant – through no choice of their own. I've never (knowingly) been one to draw attention to myself so when most of the room were looking over, the moment of cringe swooped in (well, for me at least!)

Rosie's playtime favourite this week has been Row Row Row the Boat. It's one we've done with her for a while now but just this week she's started to put her arms out in a bid for more 'goes' on the boat, her face is a picture when we get to the crocodile moment as she anticipates the scream.

Rosie has finally cut her first tooth too. It's been promising to show its face for months and now it's finally made an appearance she won't let me look at it long enough to get a picture, you'll just have to take my word for it. I'm hoping the others will follow suit and grow through quicker now so she can begin learning to chew on foods but it still looks to be a while off.

There has also been an advancement on the cuddle mentioned in the previous post. We outstretch our arms and say 'cuddles' and she throws her head into your chest sometimes with arms around you too, sometimes it's just the head – either way it's absolutely adorable.

A rare event happened to us this weekend where our family temporarily dwindled back down to three. My sister took Harry and Joe away to her caravan which gave Karen and I Friday evening through to Sunday lunchtime with just Rosie to look after. We took this opportunity to travel and visit our dear friends Ric and Claire near Birmingham who are expecting their first baby in November. It was not only great to see them and catch up but also for Rosie to meet her future friend (albeit in bump form). I've included a video of this moment below which was captured by the bumps Daddy Ric, it's just wonderful – of course I would say that as it stars my beautiful baby girl, but I'd even go as far as to say it captures some of her cutest ever moments. Just shortly before we left again on Sunday morning Claire said, ''Rosie hasn't cried at all this weekend, are all babies this easy and chilled out?" It was lovely to hear that and I cast my mind back to when we first found out about Rosie having DS and my fears of how she might behave. I assumed she would cry all the time – I have no idea why I thought this but I did, another idiotic moment of ignorance I guess.

I should also mention quickly that The Futures Rosie is finally on Facebook, you can visit by clicking here and if you want the updates to appear in your newsfeed just click the main 'Like' button.

I'm signing off this post with a fitting lyric I heard this week from Elbow's Buffalo Ghosts:

"A Journey makes me taller, A journey brings me you".

Thursday 23 August 2012

Claws, Cuddles and New shoes!

I've been well and truly put to shame recently by Rosie – as my exercising efforts dwindle away to almost nothing the Bud has been working harder than ever on losing that 'holiday belly' by performing a cross between a pull up and sit up. She has developed the strength and ability to grip hold of my fingers and pull herself forward into an upright seated position. I think the motivation to do this comes from her seemingly endless desire to grab my cheeks and claw at my neck! (I even have the scars to prove it). She is playing of course so I really don't mind, in fact I'm probably guilty of encouraging it a little because it makes her smile and giggle so much and thats something I could listen to all day. She'll then round the whole thing off with a big cuddle and all is forgiven.

Rosie is waving a lot more now as well as copying our signing for 'hello', which is not only super-cute to watch but also shows continued advancement in her social skills.

The physiotherapist also paid us a visit this afternoon and delivered Rosie her first pair of shoes – I say shoe's but they look more like a pair of pink DM's! She is being encouraged to wear these in order to support and strengthen her ankles which are hypermobile. Hypermobility is the term used to describe joints which stretch further than normal and I'm led to believe it's very common in babies with Down's syndrome.

In other news this week I was extremely proud to discover that The Futures Rosie blog is featured in Hayley Goleniowska's first entry as SEN Editor for Brit Mums. It's not only a huge honour to be recognised by someone I have a lot of respect for but it's also helped take my message to a wider audience which is great. You can read the entry by clicking here and I'd also recommend a visit to Hayley's blog Downs Side Up to see why she and her daughter Natty are such an inspiration to many.

I've included a couple of pictures below from our recent holiday in Scotland where Rosie was doted upon by everyone from Great Aunts & Uncles through to my nieces Hollie and Martha who have been like live-in Nannies for two weeks! I must give them both a big 'thank you' as they never tired of feeding her, changing nappies, entertaining, bedtime bottle feeding and giving her copious amounts of love. We now know where to head whenever we fancy a break!