Showing posts with label Family. Show all posts
Showing posts with label Family. Show all posts

Thursday, 12 October 2017

The tale of the lost slippers

I haven't had a decent, proper pair of slippers for a long time. So, a couple of weeks ago I treated myself while out shopping, especially thinking of the cooler days ahead, night feeds with a newborn and also just the day to day mundane of being able to nip outside with the rubbish without having to change my shoes (or, in reality, without getting my socks wet). 

I got them home and enjoyed having snugly, warm and comfortable slippers to wear around the house. 

For all of about 3 days... then they mysteriously disappeared. 

This isn't the first time things in our house things have vanished into the ether. In the past, there's a certain someone who has been behind taking things that aren't hers, moving them or hiding them. Not maliciously of course, just because she sees something and wants to play with it or she's playing a game and gets a bit carried away in her imagination and role play. 

There was a phase when Ella was around 3 when anything lost could either be found in the kitchen bin or lying on the back step after being posted out through the cat flap. 

After initially realising my slippers (and also one of Ella's pair of trainers) were missing, Ian and I spent ages looking everywhere obvious we could think of - toy boxes, under the beds, behind furniture and in cupboards. We then spent even longer looking in less obvious places - the car, basement, garden, on top of high cupboards - no slippers or shoe to be found anywhere.

We tried asking Ella if she knew where the lost footwear was - 'I don't know' came the answer followed by her looking under pieces of paper, under the cat and down her own top... 'where is it mummy? Where's it gone??' - where indeed Ella, where have they gone???

Then after about a week of sporadically carrying on the slipper/trainer hunt, I began to wonder if I was being too hasty blaming Ella for the missing items. We had cleared a few bags of clothes to charity and rubbish to the tip in a pre-baby clear out... could we have accidentally thrown them out? 

Being heavily pregnant I am also becoming increasingly forgetful (recent oopsies include missing appointments and being text half way through Lucy's friends party to ask if she was still coming...) had I put the slippers somewhere or been organised enough to put them in my hospital bag (no, I hadn't). By this point I'd given up hope of ever seeing or wearing the slippers again.

Until one evening this week. 

Ella was at rainbows and Lucy was playing in their room. I went up to check she was ok (see how much mess she was making) and there neatly lined up on the floor were both my slippers and Ella's shoe!

Lucy had found them in a bag - a bag  that had been in the hallway that I've moved about over the last couple of weeks with the intention of storing it away. It's literally probably the only place in the house that hadn't been searched. 

Mystery solved. Feeling a little better about my failing brain and I'm almost 100% certain Ella did do the hiding. And I've got warm feet again!

Tuesday, 21 February 2017

Call the Midwife episode featuring a character with Down's Syndrome

Being a regular viewer of the BBC One drama 'Call the Midwife', I noticed last week during the preview for this weeks episode that there was to be a character with Down's Syndrome appearing.
I was intrigued and a little apprehensive. Mainly though, I was excited that there was someone with Down's Syndrome being represented on such a well loved show with high viewing figures. I wondered how well the part would be incorporated into the existing premise of the show and also what the storyline surrounding the character would be.  And bearing in mind when the show is set (early 1960's) and the very different attitudes that existed in society towards people with any kind of disability, I wondered whether it may be too sad or upsetting to watch. 

This is the second time an actor with Down's syndrome has appeared in the show. The lovely Sarah Gordy starred a few years ago alongside an actor with cerebral palsy in a heartbreaking storyline which was a difficult watch but very well executed by the actors and writers involved.  

Call the Midwife is a show that has proved time and time again not to be afraid to tackle difficult or sensitive issues of a time in the past and a time in society that many people alive can still remember today.

This weeks story explored some more of those difficult issues.  The young character with Down's Syndrome (Reggie) is left alone early in the episode when his constant and protective mum dies suddenly.  

He is taken in by his cousin (Fred) and his wife (Violet) and although things get off to a rocky start - Violet isn't at all sure about having him around because they dont know anything about 'people like him'.  Then, after Reggie is left alone and tries to cook his own breakfast he leaves the gas on and manages to get locked out.  What follows are the most heart-wrenching scenes of him being bullied in the street and called names before we see him finding his way back to the home he shared with his mum, banging on the door calling for her and not understanding why she isn't coming to the door to let him in.  

The options for Reggie are a stark reminder of the time - to stay with Fred and Violet his only relatives or to be placed in an institution (asylum) and locked away from society and the life, places and people he knows.  Out of sight and mind, alongside others with mental and physical disabilities.   After Fred visits the asylum he is thankfully appalled at the mere thought of sending Reggie there and we are then left wondering whether he will stay with Violet & Fred to become a regular character in the show (yes please shouts the nation!). 

We see Reggie flourish helping Fred out in the garden at Nonnatus House but he is very aware that he doesn't really fit in there as he wants the company of people his own age. In the end there is a happy outcome.  Reggie is found a place in a community village where he can live with other people his age whilst being a gardener - the job he has come to love while being with Fred.  And Violet, like the rest of us became very fond of Reggie - I really hope he makes another appearance in a future episode. Daniel Laurie, the actor who played him was just fantastic and has been shown an outpouring of love and appreciation on twitter and in reviews of the show.

All the way through the episode, even with it's twists and turns and the sometimes difficult insight into life at the time for someone with a disability, I felt that we were in the hands of a writer who knew what they were doing with this character.  The way the story moved and the topics covered in such a short time made me realise quite early on that someone behind this episode had some life experience relating to the issues unfolding on the screen.  I was later informed that the writer of the episode, Andrea Gibb, has a sister with Down's Syndrome which explained why it was all stitched together so well.

I loved the ending - the community village for people with disabilities, where Reggie could be independent after so many years living under his protective mother.  Where he could be around people his own age while doing a job he loved.  A nod to the future and a very forward thinking enterprise at the time and something that many people may not be aware of even existing, either then or now.  I know I wasn't aware of these initiatives until both our grandmothers died a few years ago.  Our grans had both been nurses at some point in their lives and though they never knew each other, they both requested that donations at their funerals should be given to the Camphill Village Trust - a cause they had both supported for a long time, long before Ella was born.  The trust provides somewhere where all abilities of people can be supported to learn, live and grow within small supported communities across the country. 

I am glad that Ella is growing up in a society that has come a long way since the 'Call the Midwife' era of poor social integration, institutions and a lack of support for adults with disabilities.  It doesn't make being the mum of a child with a disability any easier though or stop me worrying about the future - It is one of my biggest fears, to not be around for either of my children.  

I don't know where Ella will want to be when she is older - I know I'd keep her at home forever if I could but knowing how independent and determined she is now then maybe assisted living or even living independently will be options for her future.  We will have to wait and see.  I do know that I want her to continue to be an active member of society and to be able to get a job doing something that she enjoys.

Tuesday, 27 September 2016

Milk monitor

I'm still struggling with getting back into the school routine.  Mornings particularly are a hectic and stressful time of day for me - as they probably are in most houses where school age children live.  

Ian leaves for work at 7am so most days I am left to get everyone else fed, dressed, organised and out the door for school at 8.30am.  The clock seems to go at superspeed during that hour and a half in the morning.

Once again, this morning 8.30 came around quicker than I was expecting.  Ella was wondering round chewing her toothbrush I'd given her a good 15 minutes earlier and Lucy was taking off the shoes and socks I had just put on her feet...  

A few minutes later as the three of us bundled out of the front door, I heard a 'mummy look, its the milk.' from Ella.  As I turned from shutting the front door - there she was clutching the mornings milk delivery from the step (2 pints of semi-skimmed in case you were wondering).

Me: 'Just put it down on the step Ella, I'll sort it when I get home'
Ella: 'No, Ella do it'
Me: 'Ella we are going to be late, put the milk down'
Ella (raised voice): No Mummy, Ella in the kitchen please' accompanied by irate tone and pointed finger towards the door

So, I fumbled about to find my house key, re-opened the door and told Ella to take the milk and put it on the side in the kitchen.  I then got Lucy into the car and belted up while Ella disappeared, all the while wondering where the milk would actually be left and where I would find it when I got home.  

Ella soon returned, got in the car and off to school we went.  And I completely forgot all about the milk.

But here is what greeted me when I got home...

Sorry, to those of you expecting a more amusing or dramatic end to this tale but the vision of finding the milk sat on the side in the kitchen has kept me smiling all day.  Just a simple example of not only following a two word level instruction (which Ella is fairly good at now) but most importantly, not getting distracted while doing it.

Good work Ella x

Tuesday, 16 August 2016

Summer Baking Class with Ella

We are almost half way through our summer holiday.  We've had some lovely family days out, seen family and friends. There's also been days where we've had nothing planned and just spent some much needed time at home and in the garden. 

As Lucy's nursery is a day nursery, it doesn't operate with terms or holidays and is open all year round apart from Christmas and New Year.  When I gave up work in December, I knew we wouldn't be able to afford to keep her in nursery the three days a week she was attending but I also knew how much she loves it there and how much she gets out of going.  She's made some lovely friends and it gives her the chance to spend some time on her own, to learn, socialise and gain some independence.  I didn't want to take her away from all that completely. So for the last few months she has been going for just one day a week instead of three.  She will sadly be leaving them next week as she is starting pre-school at a more local nursery in September, but more on that soon.

On the day Lucy is at nursery during school holidays, it means I get a day a week just with Ella. Quality time with her doesn't happen that often (if at all) now she is at school and with Lucy around too, it's been ages since just the two of us did something together.  

I started looking for something special for the two of us to do and came across an advert for a summer cooking class. Knowing how much Ella enjoys baking or helping in the kitchen and that she just loves learning by doing and anything creative, I booked her a place.    

We arrived armed with our apron and tupperware and were greeted by the lovely Jo, who would be teaching the class. We soon discovered that we were making chocolate chip cookies - 'yummy delicious!' piped up Ella.  There were seven children in the class with Ella and another little girl who was also 5 being the eldest. As most of the children were younger, that meant the pace was nice and gentle so Ella had no problem keeping up with what was happening and there was plenty of time to carry out each stage of the recipe. She's well practised in what to do anyway as baking is a favourite activity at home.

The children had to share utensils and ingredients between them which allowed for some conversation, sharing and taking turns.  They all enjoyed measuring, mixing, stirring, sieving, chopping the chocolate and getting their hands messy.  

We enjoyed it so much that we are going back for next weeks class.  It's a shame it runs on a Friday as I could have taken Lucy during term time but she will be in nursery.  There is a possibility of some Saturday classes starting and we can always go to the future half term sessions, with Lucy too. 

(Picture courtesy of Beyond Baked Beans)

After they had made their dough, the children even enjoyed washing and drying the bowls and utensils. They helped to cleaned up whilst their cookies were in the oven (they cooked one each at the class to taste then got to take the rest of their dough away to bake at home).

Once the tidying was complete, it was time for a well earned glass of juice and most importantly, a cookie!


'Yummy Delicious' as Ella would say xx

Thursday, 7 January 2016

The year that was - 2015

I always enjoy writing these end of year posts on the blog.  What we've done, where we've been, who we've met and what we have learnt. It's always lovely to be able to look back and see where the year has taken us.  For me, 2015 has not been easy - from keeping things going as a solo parent while Ian was working away to making some difficult decisions about how best to make the work/life balance work for our family as we move into 2016.  There have been some good times too, weekends away with Ian and with friends and a trip to Wales with old school pals and our growing brood of offspring!

Ian finished his year working away in August and is now back working locally.  We all love having him home and seeing more of him even though I know he misses the air ambulance (don't feel too sorry for him though, he's managing to fit in some regular locum shifts to keep his hand in!).   

Ella has grown a lot in many areas this year - most noticeably going from being a pre-schooler to starting in reception at our local primary school, but more of that later.  She still makes me beam with pride everyday and has developed a real cheeky streak this year.

Lucy has also changed massively from tiddly toddler at the beginning of the year and has become a very articulate and confident little girl who all of us dote on.  


In February, we celebrated heart awareness week again by wearing red and donating to the British Heart Foundation. 

March - we yet again donned our odd socks for DS awareness day on the 21st and once again thank everyone who also took part and donated their lovely pennies!



I attended the Blog-on conference in Manchester. Lovely to have such an awesome blogging event on the doorstep as so many of them are further afield. There was lots to learn and get involved with whether you're a blogging pro or a mere beginner/novice like me. I've already signed up to go this year (won my entry ticket in last years raffle!). 

We quietly celebrated Ella's 4th heart-day with a heart shaped cake (and a little candle) and lots of thankfulness, while thinking of those little ones who are going through their surgery or have it yet to come.  

This year we celebrated whilst eagerly awaiting news from my brother that a new little person had finally arrived. The little man who made me an aunt and gave the girls the new title of cousin (!) arrived later that evening.  A day of multiple celebrations from now on!...  


At Ella's eye exam it was decided she did need glasses (always a given due to the fact Ian and I both wear them, it was just a case of when). Getting them before the summer meant we had a good couple of months to get her used to them before she started school where it would be most important that she was able to see everything in order to learn and to enhance her fine and gross motor skills too. She wasn't sure about them at first and would take them off a lot but with persistence and the fact that they do help her see better she was soon wearing them for long stretches before she started at school. She still regards them very much as a part of her school uniform and they soon get taken off when she gets home at the end of the day! 


We went on a special trip to see The Take of Mr Tumble which was on as part of the Manchester International Festival. We finally got to meet Florence and her mum Rachel (you can read all about it here). A special day for us all.


Ella and I had some lovely day trips together during August while she was on summer holidays and Lucy was at nursery. It was lovely to spend some quality time with her and be able to give her my full attention. We went to the Museum of Transport, Crosby Beach, the Lowry, soft play and spent lots of time in the garden.


I know you already know this but Ella started school! A long time in the planning and there were lots of things to consider but 3 months on, I am sure she is in the right place. She is happy and that was all I wanted for her. Her speech has come on so much and her love of drawing and being creative has been nurtured. She has talked a lot about school and her friends over the Christmas break, (Lois, Grace and Chloe got mentioned a lot!). 


We celebrated as a family at a lovely house in the Cotswolds for Granny Sarah's milestone birthday. Ella and Lucy absolutely love their baby cousin as you can see from the above photo! 

Ella really loves animals. We have two cats who she loves to pick up and hug (not sure they feel the same way!). She also loves meeting dogs when we go for walks or to the park and enjoys days at the local farm feeding the animals there. We went to the Viking festival in Stockport and Ella got the chance to hold an Owl called 'Fally'. Ella was very patient, still and quiet and followed the instructions she was given by the handler beautifully. She was very proud of herself as the picture shows.


5! How did she become 5??? She had a great birthday, soft play party at the weekend with her friends and then a family tea on the day itself. And just like last year she loved being the centre of attention, especially where singing, cake and candles were involved! 

A big month for me personally in that I swapped my nursing career for being a full time mum to Ella and Lucy. It was a difficult decision to make for lots of reasons but was definitely the right thing to do. We don't know how long my career break will be, but I am able to pick up bank shifts as needed to continue my professional registration and keep up my skills. It's been a real change in pace, choosing when to work and being able to work around Ian's rota instead of clashing or working complete opposites as we were before. So for us, 2016 = more family time, although less work doesn't seem to mean we are less busy! Everything just seems that little bit easier when there is one less ball to juggle.

This year we got the first visit from 'the kindness elves. The elves replaced an advent calendar in our house although they didn't visit everyday (need more time!). The kindness elves are a lovely and meaningful alternative to the elf on the shelf idea, started by Anna of the 'imagination tree' blog. The idea is that the elves will teach and reward kindness and make us think of others during the festive period. The elves did lots of fun activities with the girls - from making bird feeders to give as presents (and to feed the birds while it's cold), messy play, donating food to the foodbank and general festive fun. All with the idea of reminding the girls to be kind and ways they might be able to do this. It's an idea that can be adapted and can grow with them each year. Lucy already keeps asking when the elves will be back so I can see them becoming a part of their childhood Christmases. 

Here's to 2016 - more time for family, for fun, for blogging and maybe even more time for me...

Sunday, 2 August 2015

Runner bean

Ella very much lives for the moment...

I love that about her, but it does bring with it certain challenges.  And this is in no way meant to be a negative post, just an honest one.

I am finding it increasingly difficult to go out with both the girls on my own.  Ella can be unpredictable, refuse to walk or just want to be carried - all of these scenarios are arduous due to her age and size and not at all easy when you've only got one pair of hands and a toddler in tow too.

When she does walk, it can also be difficult.  She will sit down if she's tired or sees something on the floor that's caught her eye that she wants to play with, or just because she wants to.  Or, she will just point blank refuse to move.  If she's run on ahead, all I see is every potential danger in the environment around us - she's really fast if she decides to change direction or go somewhere she shouldn't (and all with no warning).  A gap in the hedge along the path, steep edges, steps, streams/water in general, other people.  I just can't seem to switch off and enjoy a day out - I'm always on my guard anticipating all the possible dangers and at the moment just the mere thought of a day out can make me stressed and anxious.  I know it's going to be hard work. I feel I have to be her eyes and ears, anticipate the consequences of her actions, keep her safe and a lot of the time I end up being her legs too (my poor back!).

We've had one incident where we were sat outside a cafe with friends, on a busy street.  Ella was sat on her chair, drinking her hot chocolate and all of a sudden, in a split second got off her chair and ran. No warning, no hesitation.  Ian ran straight after her and luckily for whatever reason she ran down the pavement instead of straight into the road.  It's the 'what if's' that stay with me from that day, not what did happen.  She was ok but we had no idea how to tell her what she did was wrong and she couldn't tell us why she did it.

I still can't get over how quick she can be.  When she decides to change direction, run off the wrong way or back the way we've just come it all happens in a micro second and has several consequences.  I a) have to leave Lucy and ask her to stay put as I run after Ella (which thankfully, most of the time she does) b) we probably cover twice as much ground as we would have if Ella had stayed on track so c) running/walking further than necessary makes Ella tired, less likely to finish said walk and so ends up being carried or in the buggy meaning poor tired Lucy has to walk/go on the buggyboard.

And I am aware that I place a lot of responsibility on Lucy as a (just) 2 year old.  I see that her experience of days out are sometimes limited by her sister. Lucy sees me get cross/upset with Ella or a situation, she gets less attention if I'm on my own with them as Ella needs more or ends up relegated to the buggy so I know she is safe if I have to sort out Ella.  We also end up cutting days short as I end up physically and emotionally exhausted if Ella is being a monkey.

We recently went to visit Ian's work.  Both girls got dressed up in their flight suits, daddy in his and we ventured up onto the helipad of The Royal London Hospital to see the helicopter.  It was a sunny, clear but unfortunately very windy day and as soon as we were on the exposed helipad, Ella went into meltdown and kept asking to go home.  She didn't want to sit in the helicopter, be with daddy, speak to the firemen.  She was upset and didn't like it. She just didn't want to be there.  I had to retreat with her down the exit ramp while Lucy enjoyed sitting in the helicopter.  I couldn't settle her or calm her so we all went inside.  Once calmed down and with a snack I was talking to both girls - 'it was too much for you up there wasn't it Ella, you didn't like it did you?' at which point Lucy pipes up with a pouty face 'I liked it'.  She was very aware that we'd had to come in because of Ella and it was then that I realised she understands a lot more than we give her credit for.  She had a great time charming the firemen, being a helicopter pilot and I'm sure there would be a job for her in  a few years if she wanted one!  We both felt guilty for her, but I was happy she had got some time to enjoy the helicopter even if it was cut short.

For the rest of the time in London which included walking on busy pavements, standing patiently in a queue, a boat ride and negotiating the tube Ella was fantastic.  She listened, walked fairly well when she had to and was careful and safe on the stairs/escalators on the tube.  It also helped that Ian was there as physical and emotional help - it makes a huge difference.  I know Ella can walk well, follow instructions, you just never know when she will do it (and sod's law will dictate that she will be mostly well behaved when daddy/another adult is along to help)!

Don't get me wrong, the odd day out with both girls by myself I could probably manage.  But I'm tired - physically, mentally and emotionally.  Ian has been working away for a year now and finally comes home for good next week (yay!).  He's been home every 7-10 days on average and not home for long stretches very often.  I've had a year of being pretty much a single parent - I don't know how people do it full-time, you have my complete admiration.  The last year has taken a lot out of me.

The relief of getting to work (and on time) for every 7.30 am handover over the last year has been immense.  As someone in the room would say 'I'm tired this morning' I'd think you're tired?! I've been up since 5.30am, got two small children up, dressed and out of the house for 6.50am - I've done a days work already.  And then I'll work my shift, go home and do it all again before bedtime. And the same again tomorrow. I've felt like I've been on a roller coaster that you're not allowed to get off and that never stops.  My coping mechanisms have been stretched to their limits and my anxiety has gone into over drive - hence my over thinking every little thing and getting stressed so easily.  I can't say this past year has been much fun from my perspective but I know it has been worth it for Ian which I can live with  (I'm cashing in my year away from home when we have two hormonal teenage girls in the house ;-) ).  We now have the task of adjusting to life together again and giving the girls more predictability, routine and stability.  All needed, as Ella is due to start Primary school in a few weeks time.  The next chapter is about to begin.  Until then, I'm looking forward to my days with just Ella when Lucy is at nursery = days I can plan that I know she will enjoy and that I will manage too. Sorry for the long post, hope that explains some of my hesitation or declining of days out recently. Thank you to those who have helped me out on days out too xx

Photo credit ~ Laura Limer

 Happy summer everyone. More posts soon on the end of nursery, special friends and Mr Tumble xx

Monday, 1 June 2015

The 'Magic'

A couple of years ago, I nursed a lovely old lady. I'd not met her before and while helping her to have a wash, we got talking about her and her family. She told me about her husband, their two grown up sons and that her oldest son was born with Downs Syndrome. 

We talked a bit more and she asked me if I had any children. I told her I had a little girl called Ella who was two and that she too has Down's syndrome.

I'll never forget her reply, she took my hand, looked at me with a big smile and without hesitation said one word...


I knew exactly what she meant, but I couldn't even begin to try and define or explain it to you. It comes from a shared experience, an unspoken bond. A complete understanding without the need for words or explanations.
I met her son on several occasions during her stay with us and was inspired by their story - so many children with disabilities born in his generation were hidden away or given up at birth by their parents because that's what they were told to do. This family had never seen that as an option and their eldest son had been loved and raised by them and given the same opportunities as his younger brother.  The lady died some time later in a hospice but I still think of her and her family often and wonder how her son is getting on.

I Wish there was some way I could bottle up and sell the magic that is having Ella in our lives. So everyone had the opportunity to experience it.

There'd be a disclaimer though... With that magic, comes emotional, physical and mental turmoil on a daily basis! Well, not all the time but we've certainly had a challenging time of late.

She's pushed me to my limits over the last few weeks - frustrated me with her defiance/reluctance to do things, worried me when she was ill and she's constantly wanting my attention or supervision - I hear 'mummy' around 243,000 times a day. And night. Our sleep is disrupted and she often ends up in bed with me in the early hours. 

When she's challenging me, It makes me feel I'm not doing enough for her. My overriding fear is that I'm failing her - by not spending enough time with her, by going to work, by having to divide my attention between her and her little sister, both with different needs and expectations of me. And a million and one other reasons too. 

And then in and amongst the frustrations, tears (mostly mine) and chaos come those little moments of magic - an unexpected hug, her smile, a new word, singing 'Let it Go' with her sister in the back of the car, trying to ride her scooter...
 or just a selfie with mummy xx

This post was subsequently published on special needs site 'The Mighty' and can be read here

Monday, 19 January 2015

Living Arrows 2015 {3/52}

My East Coast American cousins will wonder what we're all so excited about this side of the pond... 

But we've had SNOW!! 

Not as much as they're used to but enough for a snowman (or two) and a few snowballs. It kept the whole family happy for a couple of hours! 

Lucy has never seen snow before and was a little wary to begin with. And yes, that is a tomato she's clutching - they were supposed to make up the snowmans mouth but we couldn't prise them out of her little hands... 

Living Arrows

From week 4 of #livingarrows, the weekly posts will be hosted on sister blog 'Lulu and The Bean'

Tuesday, 30 December 2014

Another year over...

The presents have been opened, lots of food eaten and lots of fun with family has been had. Now the decorations are down as we say farewell to Christmas and await the beginning of a new year...  A good time to look back and reflect over 2014...

As the year began, I had a young baby and a toddler. Twelve months on, I now have a toddler and a pre-schooler! They still love one another as much though...

              January 2014                                                           December 2014

Over the last year, I've got involved and supported several causes, projects and campaigns.  Something I never thought would happen when I started writing the blog 4 years ago.  Here are some of the things I've got involved in during 2014 and look forward to continue giving my support to in 2015...

The Living Arrows project over at I heart Snapping...Taking a photo a week of what it means to have children in your life (OK so I didn't quite manage to keep up with this all year but I did enjoy taking part and I'll try and do better in 2015!).  So more Living Arrows starting in January.

Living Arrows photography project run by 'I heart snapping'

February is both congenital heart defect and also feeding tube awareness week.  We showed support (along with Ella's nursery friends) by wearing red for raising awareness of congenital heart defects and I shared and re-shared Ella's feeding story across social media again getting some lovely feedback (For those that haven't read it, you can do so here).  I made these named word clouds for Ella and her heart friends and these were used as profile pictures and shared across social media sites.  

Congenital Heart Defect Awareness week 7-14th February

In March we donned our odd socks again to raise money for DS awareness day and Ella was featured in the 'Lose the Label' campaign.  The photography campaign was started by Michelle, mum to Mara who has Down's Syndrome.  She wanted to get the message of person first language across to people, to help others understand that people with DS are so much more than a diagnosis and that it does not define them. You can find the campaign pictures on her Facebook page Lose the Label...

I was again asked to take part in Mencap's Learning Disability week. This years focus was 'firsts' and I chose to write about the 'first' that has meant the most to me so far...Ella's first smile.  I also loved reading other contributors posts, especially those who have older children and are a few years ahead of us. We still have so many firsts to look forward to and celebrate... 

And this winter, I've supported the Matalan and Alder Hey charity campaign by wearing my alphabet scarf.  All proceeds from their sales go to the Alder Hey charity, one that I will always support after the care we all received while Ella had her heart surgery.  I've not been quick enough to get the girls their scarfs yet as they sell out so fast - I'll be quicker next time they're in stock!  

My #scarfie

And there's been a massive change in Ella over the last year too.  One of the great things about writing a blog is being able to go back and revisit where we have come from.  This year, she has grown in confidence, become a lot more grown up and has started her pre-school year at her new nursery before starting school next September.  Her communication continues to get better every week and she's now putting 2-3 word sentences together, telling stories and giving a narrative (just tonight she came and said 'Lucy dummy bath oh dear' telling me that Lucy had thrown her dummy in the bath).  Of course, Makaton continues to be an important communication tool as well and we've found that it has also helped Lucy to make herself understood and support her speech. We've made attempts at potty training Ella this year (I'll write a post on our efforts soon) but will revisit this again in the new year and have another go.  

She's become really good company with her ever present mischievous streak and wicked sense of humour... 

In June, I attended my first bloggers conference.  Attending Brit Mums Live was brilliant and I had a great time, even though I was nervous about going.  I met new people Kanchan 'intrepid misadventurer', Emma from +Adventures of Adam, Katrina aka +Mummy Whiskers  Amanda at 'The Family Patch', Carin at Artfully Carin and have loved reading their blogs over the last 6 months (even though I am bad at leaving comments - another New Years Resolution right there!).  I also finally met  in person the inspiring and charismatic Hayley from Downs Side Up.  There were a range of workshops to attend, brands galore as well as brilliant, empowering and emotional key note speeches (Emma Freud & Benjamin Brooks-Dutton).  A very inspiring and affirming couple of days - especially nice when meeting people you didn't know but you did know each others blogs.  You forget sometimes when you click the 'publish' button that people do sometimes stop by and read what you've written!  I'm looking forward to BritMums Live 2015 already...

In August I was honoured to be bridesmaid at the wedding of our good friends Nicola and Brian.  Ella was also given the honour of being a flower girl along with Rosie from The Future's Rosie.  We were put in touch with Nicola and Brian by our local Down's Syndrome group as they were facing heart surgery with their 6 month old son.  We had recently been through Ella's surgery and we went along to their house to meet them when Ella was about 8 months old.  We kept in touch and visited them at Alder Hey when Daniel had his surgery a few weeks later... And 4 years on and Ella and Daniel have grown up together and Nicola and I have become great friends.  A nanny by profession, Nicola also helps us with childcare - giving up her lie ins three mornings a week as I throw Ella and Lucy over her front doorstep at 7am so I can get to work on time (a million thank you's lovely lady) xxx

2014 has been a year of change and a year of collaboration.  There are lots of blogs about Down's Syndrome out there, all sharing experiences, telling a story and all seeking to challenge perceptions and educate society.  And by linking together as #TeamT21 we can be a bigger and more effective voice.  

Earlier in the year, I wrote these words...

"I know I am merely a drop in the ocean of change. But every drop creates a ripple. And along with all the other drops creating ripples we are collectively creating a wave.  

Together, we are a powerful force - changing attitudes, challenging preconceptions and raising awareness." 

As I mentioned earlier, in September, Ella started her new nursery.  She absolutely loves it and has settled in well.  We've made a decision about which school we'd like to send her to next September and the first steps have been made to put in place a Educational Health Care Plan for her.  In starting her new nursery, we had to say an emotional farewell to the day nursery at my work she had been attending since she was 9 months old.  I will never be able to thank the staff enough for their input with Ella during her early years (and their continued care of Lucy too!).  It was only fitting that after their recent OFSTED inspection that the nursery received a rating of outstanding...   

The two nursery workers who are Makaton tutors

And the blog, along with lots of other things has had to take more of a back seat this year. Ian is currently working away from home having a go at his dream job with the Essex & Herts Air Ambulance.  So I've been thrown into life as a part-time single mum which doesn't leave much time for, well anything! I certainly have a lot more respect and admiration for all my single-parent friends - I don't know how you do it. I also took on some new challenges at work, so life has been anything but quiet over the last 6 months.  Hopefully more time for writing and blog related activities next year.



We've packed a lot in this year and I get the feeling 2015 will be just as hectic!  

Happy New Year everyone xx

In loving memory of three influential and lovely ladies who we lost this year
Gran Tyrrell
Granny Judson
Grandma Marsh

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