Throw back Friday

Well, you can tell it's half term just by the amount of times I have updated the blog! Throw back Friday this week takes us back to August 2009 when Elin had just turned one. We took her to the Blue Planet Aquarium and the reason I have chosen this moment in time is because we're taking her back there..tomorrow! Squeeeeeaaaalllll!! Taking full advantage of the incredible sitting she's been doing, let's hope she is still as happy tomorrow because I for one am super excited about it! Nemo, we're coming to find you!!!!

Check out her little feet poking out!!

Daddy helps Elin stroke the Stingrays! 

Beautiful shiny fish! 

A picture paints a thousand words..

Off out again to Ty Mawr Country Park. Good as gold. Happy Friday Elin fans xxx

The adventure continues....

Just as good in chair today- hurrah!! So we did go to the Cinema, to see a classic all singing all dancing Disney extravaganza 'Frozen'.  The funny little Snowman, Olaf, was Elin's favourite but she basically didn't stop smiling all the way through. Thanks to the Odeon for being so helpful and for a scheme whereby Elin gets in for free. Every little bit helps!

A Grand Day Out

Elin has been absolutely brilliant in her chair this half term. So we've been taking advantage with village strolls, visits to the Library, walks to Nanny's house etc. Today we went further afield -into town- firstly for Daddy's opticians appointment and then for a bit of shopping, she was as good as gold. It was amazing!! So lovely to do something so simple that everyone else takes for granted. Elin was rewarded with a trip to Waterstones where she got to pick a new book- we found one about Sophie, her little Giraffe that goes everywhere with her! It was meant to be. A perfect end to a perfect day. Cinema tomorrow I think if her good mood continues as she hasn't seen 'Frozen' yet . Don't you just love half term?

Trying on Hello Kitty glasses whilst waiting for Daddy!

Waterstones. We found a book about Sophie and it was a touchy-feely one, too!

Mummy! I can't see how sad!!

Take a break..

Everyone with kids knows the importance of getting time without said kids. It's not that you want to spend regular time away- you don't have kids so you can leave them with someone else- it's just that sometimes you want to get back to the place you were in before you became 'Mum and Dad'. Before the world revolved around nap time, tea time, bath time, bed time, school runs, toy tidying, washing et al. Thus, God invented Grandparents. When my twin sister and I  were little, we used to regularly go to our Nanny and Grandad's for the night on a weekend.  We basically got to do what we wanted for 24 glorious hours, within reason. I remember we tried our luck once when my nan asked us what we wanted for breakfast. 'Erm....Chips??' I bravely suggested (my Nan was a fan of chips, old fashioned proper chip pan chips, the good kind). 'Ok' said Nan, followed by the Grandparent mantra and only rule ever imposed 'Don't tell your Mum'. We ACTUALLY had chips for breakfast, just because I had asked for it. It was like a magical land of crazy freedom. Grandad used to say to us 'When are you coming on your holiday's???' meaning when were we next making the (hardly epic) 6 mile trip to their house again. Because it was like a holiday for us, of course. But what I didn't realise was that it was mostly a holiday for my parents, a realisation that only truly occurs when you become a parent yourself ( a lie in? YES PLEASE!)
When your child is several disabled, this chance of a mini-holiday can be a little more difficult. It's not because Grandparents (certainly in our case) aren't willing, it's just because there is so much more to worry about and organise and coach said Grandparents on before you can even think of leaving your child for the night. You start to think it may be easier just to not bother. What sort of a break do you have if you are worrying the whole time, anyway? Also, babysitters need to come to your house for the night, where all the specialist equipment is- where are you supposed to go? Unless you can afford to getaway on a hotel mini  break more often than the Beckhams, a meal out and back home early doors is the best solution.  Hence the reason why we have only ever left Elin for the night four times in her lifetime. Don't get me wrong, Paul has been away to visit his brother in Spain, or to our London family by himself or with Caitlin. I have been away with my girlfriends for the weekend, or on hen nights etc- (and of course, we have been away with Elin many times). But going away together alone is different, because you have to leave her with someone who is not one of us two. But at the same time, the importance of time away together is unquestionable. This half term we callously abandoned Elin with Nanny and disappeared to a hotel and spa for the night. We had a lovely evening meal out and did some shopping the next day, too. It was great. For the first time ever, Elin was 100% fine when we left. Previous to this, she had always been a bit under the weather when we tried to get away, leaving us feeling slightly worried and very guilty. I didn't even think about worrying this time, we could see she was on top form. We just knew she was going to be ok and it was a tonic, after a busy half term, to spend some time relaxing "without the kids". Elin, it turned out, was good as gold for Nanny. Maybe...maybe we should do it more often?

Leaving Elin with Nanny. Elin doesn't look too worried!

Elin's face when we came home. She doesn't look like she missed us too much!?!

Half Term

So, Elin had a bit of a 'wobbly' week last week. Not herself, not particularly happy and needed rescue medication on Thursday for the first time in ages. It's so frustrating and upsetting seeing Elin like this, as sometimes you just can't work out what's wrong. For days she just wasn't herself. It kills me to know that she cannot tell us what's bothering her. We still don't know what it was that knocked her so off kilter. Thankfully, as quickly as the unhappiness descended, it left. She had a better day at school on Friday and as soon as she opened her eyes on Saturday morning I knew she was back to her old self.  This was extremely good news as we had our lovely London family staying with us, who we haven't seen since our  Christmas visit to them. I always want those who are unable to see her frequently to see her at her best when they do see her. So, luck was on our side. Elin very clearly realised that there were unfamiliar voices in the house and was visibly fascinated. In particular she seemed to zone in on the children's voices. Arthur is 6 and Tabitha is almost 3. Elin thought the sound of them playing and talking and laughing was the best thing ever. She laughed, too. How wonderful for her to be surrounded by such energy and fun that only the very young children can bring to a household. I am struck that last time they visited, in July, Elin was a little less happy about having strange voices and lots of noise in her surroundings. It seemed to confuse her and disorientate her slightly. So in this we have another sign, that she is learning, learning all the time. making tiny adjustments to her understanding of the world. It was, as always, great to see the children together. I wonder what Elin looks like through their eyes, what they are thinking about her, if they see how different she is and if they are trying to make sense of it all. But mostly I see that they simply and happily accept her for who she is- a lesson the world in general could take from the innocent minds of these small, wise, uncomplicated people we call children :-)

Throw back Friday..

Once upon a time, Elin had the most amazing childminder ever. She also happened to be a good friend of mine-helpful! Oh and did i mention she lives practically across the road? Without you, Heather, I never would have been able to go back to work. I never would have gained back a bit of the old 'me' and started repairing the emotional damage since the trauma of Elin's birth and the subsequent diagnosis. You gave me a piece of my life back in your love and caring for Elin, because you made it ok for me to go back to my 'old life' (just a little, anyway). A small break from the worry, a chance to be Ruth for a bit and not only 'Elin's mummy'. We trusted you completely, you took everything in your stride- the medications, the responsibility, the seating issues- even with four boys of your own you dedicated two years of your life to aiding Elin's development and finding different ways to stimulate her day in, day out. You will always be a part of Elin's life and it was you who gave her the start she so deserved- probably why she is so sociable and happy today. We can never thank you enough for what you did for Elin, but also for us, in those early days. So today's 'Throw back Friday' photo is taken from Elin's time with you and your boys, I know she stole your heart but I also know you stole hers, too. Heather- our angel.

Elin's best friend.

This weekend was a very special girls birthday! Caitlin was 16 on Saturday. Of course with birthday's quite often come reminisces and it got me thinking about the past, especially the past six years or so since Elin was born and changed the shape of our family forever. When Caitlin was 10 and I was pregnant, she made lists of babies names. She said she didn't mind if she had a brother or a sister but I knew she was hoping for a sister. She made plans, like us. She wondered if the baby would be able to sing like her or if the baby would look like her. She talked about how she could babysit when she was a bit older and how they would play together. She was excited.
The first time she saw Elin, on ICU and just two days old,  Elin stopped breathing. A Nurse began to bag oxygen into her. People were yelling, Caitlin was ushered out of the room. What a terrible experience for a 10 year old the first time she meets her baby sister. It occurs to me that it wasn't just our hopes and dreams that were in tatters in those first few days. It wasn't only us that was scared, devastated and loosing a grip with each passing day on the child we had thought we might be welcoming into our home. The future was unknown and with each diagnosis and test result came a certainty that this was going to be no ordinary experience. No ordinary little sister.
But it turned out Caitlin was made of strong stuff just like Elin. Caitlin did not once react negatively to the situation. She never complained about anything- the constant crying poor Elin did, the way our lives were all turned upside down in those first few months, the lost hopes she may have had for a younger sibling or the stress she must clearly have witnessed us both under. She told people her sister had 'several palsies' , pointed out that the paralympics were on T.V at the time and plenty of the competitors had 'several palsies' too. She thought Elin might be good at the special cycling when she got older.  She held her and kissed her and talked to her and took photo's of her. She told her she loved her and read her stories. She told her she was the best little sister ever. She never felt sorry for herself or us and never shed a tear (not in front of us anyway). This was an attitude of complete positivity that took her Dad and I a little longer to adopt. Maybe ignorance is bliss, maybe we knew too much. But the truth is she had it right from the start. Caitlin has always been wise beyond her years and the simplicity of acceptance came much easier to her 10 year old self than it did to us. She showed us the way. I have always been proud of Caitlin, but never more so than since her sister was born and seeing the young lady she has become. She is unwaveringly and fiercely protective of Elin and though I have to concede the situation must hurt, despite her positivity, she has never once wallowed in it or used Elin's condition as an excuse for anything. Being a teenager can be difficult and confusing at the best of times. But Caitlin has been nothing but absolutely gracious and supportive in light of Elin's birth, no mean feat when you are growing up yourself and trying to deal with your hormones going crazy. Of course, she has been rewarded with Elin's complete adoration- she is without a doubt Elin's favourite person in the whole world, her face visibly lights up when she hears her voice! So Happy 16th Birthday to the most mature teenager I know, Elin is so lucky to have you , though I know you see it the other way around. That's what makes you so special.  Everyone talks about Elin being a miracle and one in a million, but we know where she gets it from. The best big sister in the world.

Sweet 16 

Throw back Friday...

When you see your child every day it's hard to remember how different they once looked and how small they were! This photo makes me want to reach into it and pull out my baby so I can have one more snuggle with her this size. She was such a beautiful baby (biased? moi??) Happy Friday folks x

Under the weather...

Just taken this photo- not a face we have seen a lot of this week! With the horrible weather (rain! Just constant rain!) came the horrible lurgi to our little house and both Elin and I have been suffering with bad throats! At least, we're pretty sure that's what's been bothering Elin after a second doc examination this week revealed a pink throat and enlarged tonsils! Coupled with the fact that I have lost my voice completely it seem likely that Elin's run of being 'off form' this week has been down to this virus. Boo! It's awful not knowing what is wrong with Elin, if nothing obvious is presenting itself it can be hard to work out what is-if anything- bothering her. These are the times when I am most frustrated by Elin's communication impairments- imagine knowing there is something wrong with your child but not being able to help because you just can't work it out. Like a newborn being poorly I guess. Not nice. However, with medical help we think we have the answer, sadly there is nothing we can give her- just lots of cuddles! Elin's favourite medicine!! And my favourite medicine to give. She definitely seems brighter today- her smiles are much more forthcoming-even had some lovely laughs- so hopefully a restful weekend will sort her out and she'll be back to herself by Monday. Who knows, maybe the sun will stay out too???? We can only hope..