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".