Showing posts with label Special days. Show all posts
Showing posts with label Special days. Show all posts

Monday, 24 August 2015

We Three Teds

'Three teds (Dotty the Cat, Olive the Lion and Frank the Monkey)  travelling the world visiting real families who want to share their lives - each is lucky to love a person with Down Syndrome'...

Our visit from Dotty the Cat coincided with a visit from some special friends…

Having Ella and her extra chromosome has always meant we have met some very special people that we wouldn’t otherwise have in our lives.  When Future of Down’s was first set up in 2011, there was no facebook page, just an online forum where parents and families could go to discuss anything and everything.  

It was during the first few weeks of being on the forum and reading posts that I came to read Rachel’s story.  And it was so very similar to mine.  Her daughter Florence was born six days before my daughter Ella.  Both had cardiac defects and feeding problems and both our girls were PEG fed.  I can’t tell you how wonderful it felt to have ‘met’ someone else who was going through what we were.

Fastforward to today and we have helped each other through uncertain times, surgeries, feeding issues and hospital admissions.  We send birthday presents and Christmas cards and the facebook message between us is 4 years old and could quite easily be turned into a novel! It’s been a running joke for a while that we would have to meet before our little ladies started school.  

So finally, this July (just 6 weeks before school starts) we managed it!

My mum bought us tickets to go and see ‘The tale of Mr Tumble’ in the Manchester International Festival as part of our Christmas present.  Rachel managed to get tickets not only for the same performance but also bagged the seats next to us.  She and Florence arrived at our house on the Satruday afternoon, stayed over and then we headed into Manchester on the tram to watch the Sunday morning performance.  

A thoroughly lovely weekend and so special to meet someone in the flesh after being friends for 4 years.  And lovely that we had a Ted to share it with too.

And Rachel, thank you for a lovely weekend and for all your words of encouragement and support over the last four years, lets not leave it so long til next time! Xxx

Tuesday, 9 December 2014

Now I am 4!

Happy Birthday Ella!

For some reason, 4 seems so much bigger and older than 3 to me. I feel as though she's grown up so much, more than the passing of just one year... 

3 to 4... A reminder that Ella is no longer a toddler but a little girl.  And I've been subtly aware for a while now of all the little changes I've noticed in her that have been signalling this transition.  But now I can actually say she is 4, they all suddenly make sense... The growth spurt, starting pre-school, her growing confidence in the world around her, pushing boundaries and how grown up she looks - especially next to her little sister.  

I recently attended Ella's first review meeting at nursery.  A chance for me to meet with her teachers, educational psychologist, next years reception teacher and a representative from the childrens' disability service.  It's the start of her educational career and the putting in place of her 'Educational Health Care Plan' (the new process of putting in place a statement of needs for when she starts school).  There is a lot of emphasis about parental input in the new system and I was asked to tell all these new faces in the room who Ella was, what was important to her and what her needs are. I felt very responsible being her advocate and was glad of the support from the nursery staff and her teacher Bianca.

So Ella bean, this is what your teachers and I said - a reflection of you aged 3 and a great place to start now you are 4...

Sociable, happy and always busy

Creative - loves to draw, build things or get immersed in imaginative play

problem solver

You've a Big heart

And a smile to light up a room

Keen to learn - will always try hard

Love the outdoors - happiest bouncing on the trampoline or getting messy in the mud

Your caring side always evident, especially around your little sister who you love very much. 

Now you are 4 xx

Monday, 29 September 2014

My Big Girl and I, Part 2

This is my last Monday with only Ella while Lucy is in nursery. Then it's back to normal from next week. So today I thought we'd do something that would be nigh on impossible with both of them and that (more importantly) Ella would get the most out of...

I've had this activity in mind for one of my Monday's with Ella ever since I discovered it a few weeks ago. And as daddy was here as well, it seemed a great opportunity to try it out. 

You'll know by now that Ella loves her trampoline and is very good at jumping properly and bounces whenever she can (including on the beds and sofa...).

With that in mind, today we paid a visit to  'Jump Nation'. It's basically a massive trampoline arena of 139 connected trampolines (including some semi vertical ones on the walls). Ella heaven!! 

The staff were great and were very accommodating, taking into account Ella's extra needs. They went through different options before we paid and offered to show us the arena so we could decide what was best.  We decided upon daddy being with her as a carer which was £2.50 - the price of a pair of trampoline socks (but he couldn't bounce, just supervise). The lady on reception said they were hoping to organise some sessions for children with special needs/disabilities and she recognised Ella was using makaton which always wins brownie points with me!

So, kitted out in her jump nation socks, wristband and bright orange tabard off she went.

Our very own little 'Tigger'!!

They have an under 6's area cordoned off, which she spent all of about 5 minutes in before venturing out into the main arena with the teenagers and adults (this didn't surprise me at all!). Thankfully daddy was there to supervise while I had the hard job of sitting in the cafe with a latte and slice of carrot cake...

Unsurprisingly, she absolutely loved it. We're even contemplating Jump Nation as a certain little lady's 4th birthday party venue! 

All bounced out xx

Tuesday, 9 September 2014

My Big Girl and I, Part 1

To cut a long and rather boring story short, for the next few weeks Lucy is going to nursery on a Monday meaning I get a day a week with Ella by herself.

This Monday was our first day together.  After dropping Lucy off, we got home to greet the builders and to see the skip being delivered. 

Along with next door, we are squaring off the back of the house as it's currently 'L' shaped. Next doors is slightly more ambitious than ours (large kitchen/diner) but we will end up with a utility and a downstairs toilet when it's all finished.  Ella's enjoyed waving to the builders from the window and watching them dig, lay bricks and pour concrete.  

She then spent most of the morning sat at her table drawing.  She asked for the paper and got the crayons out of the cupboard by herself.  Lots of scribbling, drawing and concentration...

I've not known an activity hold Ella's attention for so long, or keep her so quiet.  And not having Lucy, I didn't know what to do with myself! So I got a cup of tea and sat and watched her.  She did ask me to join in and draw a face, but for the most part she was happy drawing by herself.  I noticed she has moved away from simple mark making to more of a colouring in action with some circles and other shapes - not just straight lines.  The way she holds the crayon is getting better too, using her fingers rather than her palm.  She's getting good with her colours now, as she named the colours of the crayons she was using (I had no idea she knew 'brown'!). 

After lunch, we headed to The Lowry at Salford Quays.  Our destination was the 'Here's one we made earlier' exhibition, all about the history (and future) of childrens' television broadcasting.  

We both had a great time, Ella spent ages reading books and playing with the soft toys in the ‘CBeebies’ window, she shook hands with a teletubby, met Gordon the Gopher, Morph, The Clangers and Bagpuss too!  

She enjoyed running through the exhibition space, which was fine as it was relatively quiet now it’s term time.  It was good to be able to let her loose and have a bit of freedom – you forget how much easier just having one child is!  

After the exhibition we went for a stroll through the shops and I treated Ella to a chocolate babyccino from Costa.  She helped to eat my cake too!

It was then time to collect Lucy, who had also had an exciting and fun-filled day with her friends.  

Even though they were both exhausted, Ella resisted bedtime to get in some more scribble time...

Now to decide where to go next Monday!...

Monday, 9 December 2013

Now I am 3!

So, now she's 3... How did that happen?! 

She has achieved so much this last year and shows no signs of stopping.  She's gone from taking one or two solo steps just after her 2nd birthday to now running round the house asking to be chased and tickled.  Her speech has come on so much and she continues to use Makaton, learning new signs and words all the time.  

Most importantly, this year she's become a big sister to Lucy - which has been a massive step forward for all of us, as a family.  Ella has grown up so much and it's clear that both our girls adore each other...

With every year that passes, she continues to amaze us. I look back to her first days, sleepy and jaundiced in her special care incubator.  A heart defect, feeding problems and very little positivity or words of encouragement from medical staff.  We were told her development would be slower than children with Down's Syndrome who didn't have heart defects and I got a tut and a head tilt from the consultant when I said we hadn't had any pre-natal screening.  

I'm glad we are rational, pragmatic people and that we paid little attention to their predictions. We had the support and positivity of our family, friends and each other to get us through. It was up to us to give her the opportunity to reach her potential (whatever that was going to be) - and if we, as her parents didn't believe in her then nobody else was going to.   

Being a mum has been the hardest job I've ever had.  But I look back on how hard it's been and know that I am a better person because of these last three years.  I've said it before, but Ella really has bettered any expectation of the child I imagined I would have.  The rewards of being her mum and watching her develop, learn and grow I can't put into words.  She's a wonderful teacher, makes us proud everyday and has a world of possibilities waiting for her. 

You can tell she is three - overnight, she's become very defiant, independent and very quick tempered - we've left the 'terrible two's' behind and most definitely have a 'threenager' on our hands....!

To Ella, who is still unaware of what a birthday is, the actual 'big day' was to her just like any other.  Except there was a big pink balloon to play with and presents to open (she's certainly got the hang of what a present is!)...

We celebrated Ella's birthday with family this year.  A lovely reason for both families (and all 4 generations) to get together.  She was well and truly spoilt - lots of presents, loved having everyone around and her favourite person 'Mr Tumble' made several appearances throughout the celebrations... She also loved being sung to and having the candles blown out - we had to sing happy birthday 4 or 5 times!

Mr Tumble cake

Spotty bag 

After the weekend family celebrations, we had a birthday trip to National Children's Museum 'EUREKA'.  I've been wanting to go for ages now - I have fond memories of visiting when I was younger both with my mum and with school.  The museum is great - like a giant kids playground that all ages can enjoy.  The highlights for Ella were the mini high street (complete with bank, supermarket and post office) where she loved filling her mini shopping trolley with food and then proceeded to do a 'trolley dash' around most of the ground floor area... 

I was pleased to see that my favourite part of Eureka was still there, although it's been recently updated.  The interactive, sensory exhibit 'All About Me' -which is a walk through of the human body, incorporating all the senses, bodily functions, our health - including dentists chair and equipment (plus a giant set of teeth!), a pregnant woman complete with moving bump and ultrasound, body scanner, the importance of excercise and (Ella's favourite) the chance to hold your own baby clinic...

Just like Granny!

Luckily the exhibit was fairly quiet, as Ella took quite a liking to the doll provided and insisted on taking it with us as we explored the gallery...

Lucy enjoyed herself too, especially the tactile, sensory exhibits. And Ella had a ball dancing to the music in the sound booth...

I was also on the look out as we explored, for a little boy called Jack.  I heard all about Jack via the Huddersfield Down's Syndrome Support Group (HDSSG) on Twitter. When Eureka re-developed the All About Me exhibit, they wanted it to echo the diversity of our society and represent the people and families they hoped would visit the museum. As part of this vision, they asked Jack who has Down's Syndrome to model for the project. A massive thumbs up for inclusion. I was worried due to Ella's random approach to looking around that we would miss him, but we did see him dancing and on the feature wall outside the exhibit...

(Picture from HDSSG website)

We had a lovely few hours and will definitely be using our annual pass again as there was too much to see and do in just one visit. 

Happy Birthday little Bean (stop growing up so fast please! xx)

Tuesday, 26 November 2013

Happy Birthday Ella xx

Very busy 3 year old... wouldn't stay still for any photos!  

Birthday post coming soon after the weekend's celebrations with family xx

Now you are three xx

Monday, 23 September 2013

Flower Power!

Last weekend, Ella and Lucy were the flower girls at my brothers wedding.  They wore beautiful matching dresses, sparkly shoes and Ella had a lovely heart adorned with bells to carry instead of flowers.  Although she didn't fully understand what was going on, Ella loved having lots of family around and it was good to introduce Lucy to members of the family who hadn't met her yet.

I was a very proud sister and mummy as I walked down the aisle with my girls (even though Ella dropped the heart, sat down, refused to get up, tried to escape down the empty pews....we got there in the end!). 

The whole day was lovely - Tom & Vicki had organised everything so well... Thank you gifts, the old London bus for transport to the reception and the surprise choir they organised as part of the ceremony.  And Ella once again took to the dance floor in the evening (in her pyjamas and after a power nap on daddy to recharge her batteries!).   

This is another post where the pictures of the day explain how lovely it was better than I can with words...



Choir, singing a great rendition of 'Mardy Bum'!


Cookies and milkshakes followed the ceremony...

Double decker bus!...

Fun masks and props for taking polaroid pics!


My Beautiful thank you gift...

I'll leave you with one of the readings from the church, the words of Dr Suess...

We’re all a little weird. And life is weird. 
And when we find someone

whose weirdness is compatible with ours, 
we join up with them and fall into
mutual weirdness and call it love

Congratulations Tom & Vicki xxx

Related Posts Plugin for WordPress, Blogger...