Thank you..

...for the incredible response to my previous post. It is now the most viewed post I have written since starting the blog in 2008. It has been shared by Scope Wales, which I find extraordinary. It has also been shared, amazingly, by the Association of Paediatric Chartered Physiotherapists, who emailed me to say they had picked it up and felt it would be useful for their students to understand a little more about some of  the children they would be working with and their families. WOW. I always say I will be completely honest writing this blog, as otherwise what's the point? Even though sometimes that can be really, really hard. But I guess a little honesty goes a long way.
I have received some wonderful emails from some of the parents who have picked my blog up just from the sharing of this post alone. I needn't tell you how lovely this has been, since a huge driving force for me to start this blog was that it may reach out to others in our situation. When Elin was born, it was the internet that was able to bring us the most comfort-various websites, social media groups and blogs by other families- given that at the time we knew of nobody locally who had been through the same thing. Now, my blog has been a source of comfort to others and the journey has gone full circle. Not that this means I am going to stop any time soon. Just wanted all you readers, sharers and champions of this blog to know what your time has meant to me.
It has meant everything. 
That I'm not pouring my heart out in vain, that people are interested in our girl, that we will never be alone in this- and that even complete strangers can kind beyond measure. 
So thank you.
You're all awesome :-)
Ruth x

Choose life.

I recently chanced upon this photograph and instead of giving me the warm, fuzzy feeling that old photographs of your kids are supposed to do, it made me cry like the world was running out of red wine.

You would be forgiven for thinking Elin was relatively newborn here. She was actually almost five  months old. She should have been starting to try solid foods. Rolling over. Smiling . Exploring textures. Putting anything and everything in her mouth. Babbling. Teething on time. Laughing.

Of course, she wasn't doing any of those things.

She was about to go with us to Alder Hey children's hospital, for open surgery that would take hours. Her brain had been so damaged during her birth that she could not swallow and was fed by a tube we had to learn to feed through her nose and into her stomach. Her stomach, in turn, on not receiving the correct 'messages' from her poorly brain about digesting food, rejected anything that went into it. This meant Elin vomited every feed (hence the reason she is skinnier that some newborns in this pic). As the vomit was acidic, she was often in agony every waking minute of the day. She cried for hours and hours, every single day. Each one of these cries pierced our hearts and slowly suffocated us. Each time her face twisted in agony that nobody seemed to be able to help her with, a little part of us died. Her agony was our agony. I hated myself for having her. Sleep deprivation will twist your feelings and muddy your thoughts like nothing else. I figured I forced her existence by having IVF and that my selfish need to be a Mum was being punished. But it wasn't just me being punished, it was Paul too but mostly and worst of all, it was Elin. They were categorically the worst few months of my life. 

They should have been the best.

Everything was back to front and upside down. Absolutely everything was wrong. I wanted to crawl under a rock and die. But mostly I wanted to scoop Elin up and run, except I didn't know where to. Beyond the rainbow? There was no colour in our world . We thought we were going to Oz the day we drove to the hospital, knowing our miracle was in sight. But we ended up spinning around in the cyclone of a storm that did not pass. The miracle was not the safe delivery of our longed for IVF baby. The miracle was that she survived. There was nothing else.

Oh, how clearly I remember taking this photograph before we travelled to hospital that day. I thought it might be the last photo I would ever take of her, who knew how the surgery would go? Here's the worst bit.  I didn't know If she should survive. I didn't know what was best, the unbearable cruelty of the pain of her short life was hard to shake. My heart was rotting and turning blacker by the day, with every scream of Elin's and every time her tiny body frantically writhed in pain. I can hardly believe it now, but I didn't know for sure if I wanted her to live.

Wow.

When I look at this picture I remember all of that. I remember the grave Neurologist taking us into a room at Alder Hey a week after the operation and asking if we wanted to see the brain scan he had requested on noticing her abnormal movements which he was concerned were seizures. We declined to see the brain scan. We didn't want to think of it every time we looked at her beautiful face. But we asked him to tell us what he had found. He told us the whole picture and it was the first time we had heard it all laid out before us. There would be no walking, no talking, no feeding. There would be endless hospital visits. A lifetime of illness. Her brain damage was about as bad as it could be. She wouldn't, he said, ever be 'a thinking person'. My baby, four months old and recovering from massive surgery, would never be a thinking person. 

To digest and accept this about my daughter and keep putting one foot in front of the other (in all honesty even just getting out of bed) was easily the hardest thing I've ever had to do.

But, when I look hard at this photo today, my overwhelming feeling is how wrong I was about her future. How the darkest time of our lives slowly but surely gave way to light, as Elin recovered from her operation and the amazing gastro surgery that saved her life. As she slowly healed, so did we. My heart began to stop aching. Things did not magically become ok. It took months (has it taken years?) for us to focus only on the positive. To grieve for the little girl who died in the moment of Elin's birth. To see Elin for the amazing child she is, for what she offers the world in her own right. She has only reached two of those four-month old milestones I mentioned earlier and she is almost 8 years old. She reached them on the same day. She was ten months old. They were smiling and laughing.

She hasn't really stopped doing either since.

So the torrent of tears this photo produced, I slowly realise, are not tears of sadness but tears of happiness and relief. Tears because I can't believe how bad things were and I can't believe how far we have come. How blessed we are with Elin's incredible fighting spirit. The girl who would never be a thinking person is so much more. She is a fierce, brave, funny, intuitive, stubborn, joyful and loving. 

She is a miracle twice over. 

We love you so much, Elin.

"Some people will never understand the shadow. They don't realise it's part of the light"

Nia Wynn, Blue Sky July 2007

Flying high

This is a pretty fantastic video of Elin taken at school, clearly showing her indicating that she wants 'more' of something. In this case, its more of the song 'Puff The Magic Dragon' please!!! Elin's support worker lets her listen for a while, then cuts out the music. She will only start it again once Elin 'shouts' for it (by vocalising as best she can). Not only can you see Elin 'singing' along to the song and visibly loving it, but (on the second time in particular) her facial expression changes INSTANTLY when the music is turned off. She waits, then clearly 'shouts' for it to be turned back on. Elin's support worker touches the side of her mouth to indicate to Elin that she is waiting for her to shout before she will turn the music back on.  I cannot express how it feels to see Elin communicating in this way, small as it may seem to those unaware of her journey. But she has travelled so very far under the expert guidance of her teacher and support worker at school. We are so  lucky that this multi sensory, individually tailored and specialist education is available to Elin. We will never cease to be grateful for what it has given her and what it has given us to see her grow, in a more tiny way than most ordinary experience would deem relevant but in a bigger way than we could ever have dreamed.

"Children with special needs are like a butterfly with a broken wing. They just need extra loving care to learn how to fly"

She definitely has the extra loving care.

Keep flying, Elin

xxxxxx

April showers

Well, the Easter holidays are almost over (sob!) and Elin has had an equally good second week I am pleased to report! We have enjoyed such a lot of quality time together as a family we feel extremely lucky to have the same holidays as she does. It gives us that precious time with her and the luxury of not having to plan too far ahead- it means we can just see how she is each day and take everything from there. Her sleeping pattern hasn't been amazing, usual story for the school holidays ( the change in pace to a much more lazy routine just doesn't tire her out as much) so we have been getting up late and going to bed late. It is going to come as a shock to all of our systems to be up and out of the house by 8am next week! But that's what the holidays are for, right?
Anyway aside from lots of napping Elin has enjoyed several visits from friends, a few nice strolls in the sunshine and a trip to the Cinema. She also unfortunately had a trip to the doctors. The sore on her ear simply hasn't healed- and it's been aaaaages. We did everything we could to avoid oral antibiotics which never agree with her and usually set off her stomach on a very poor cycle which it can be hard to right, but in the end it has been the only option.Predictably it has had connotations for her bowel movements (tmi!) but so far this seems to be the only side effect. Hopefully it will abate as soon as we stop the short course.
This exact time last year we were in Disneyland Paris. I can't believe it's been a year. I'm also not giving up on the hope that we will get back there one day. But we cheered ourselves up by going to see the latest Disney film 'Zootropolis' today and we all loved it! Such a clever film with a great message of equality at it's heart and funny, too. Elin loved it!! I love how much she loves the Cinema. Just a shame she has not been for sitting in her chair these past couple of days, but so the endless cycle continues, we have had a good few days so we can't expect more than that.
I hope your Easter holidays have been as enjoyable as ours. I am finishing off the week with a Hen Night in Blackpool tomorrow-eeeek! 22 of us footloose and child-free. It could get messy. I'll let you know, if I don't die of alcohol poisoning before then. Until next time........

Elin enjoying a stroll in the village with her "ghetto blaster" as my Mum calls it. Seems to help a bit with distraction when she's not in the mood for sitting.

The eagle-eyed among you will notice Elin's new red rain mac (yes I know some of you Elin fans definitely notice these things!). The thing is, Elin has been sporting a gorgeous yellow mac for some time now which I have been insanely jealous of. Anyway, Topshop finally answered my prayers and are now stocking an adult version of said yellow mac. Well, of course I had to buy it. But this left me with a clashing issue (as in, I clashed/matched Elin when we went out.  Not a good look. I am sure Victoria Beckham and Harper can pull off matching outer-wear but Elin and I just looked a bit daft ) So what was the solution? Well, Elin would just have to have new mac too of course !!! Ha!! Needless to say Daddy Drake is bemused by the whole thing and thinks it's ridiculous but he is, after all, just a man and doesn't understand such issues so we just ignored him. She can still wear the yellow one to school I pointed out reasonably, but it fell on deaf ears. I think you'll agree it was worth every penny .....

Hee hee! New Drake Spring wear line came in very handy with all the April showers this week! Something else Elin has been up to other than parading her new mac around is playing...lots of playing. Talking Tom is still a huge favourite. I took this snap which I entitle 'cheeky face'. Caught in the act of some serious fun Miss Drake!! 

Sneaky cinema selfie. I get in for free when we go, as Elin's carer, so it actually works out a very cheap day out for us. Especially when Paul insists on buying snacks from Poundland before we go in as he's 'not paying those prices' !! He calls it sensible, I call it tight. Anyway we highly recommend 'Zootropolis' good fun was had by all :-)

Until next time Elin fans.........

Oh I do like to be beside the seaside....

You know when you're in a nice hotel and you're not used to it...and you get to the pool and open a locker and there is free dressing gown, towels and flip flops and you're landed. Wow. This really IS posh you think. So off you trot and then later on there is a bit of a commotion- there are hotel employee's coming in and out of the pool etc- and it turns out you opened someone's locker, stole their stuff and caused the hotel to try and swap the family's room because the room key was in the pocket of the dressing gown you're now parading around in at the poolside, and said family are worried the 'burglar' might turn over their room and take the rest of their stuff? That.
Yes.
That happened, to me, during our hotel stay. Mortified doesn't quite cover it, especially as the mistake was finally cleared up when the child of the family was heard to announce 'Mummy isn't that lady wearing your dressing gown?...and flip-flops.......?' CRINGE. You can take the girl out of Wexham.......
Anyway, aside from a very red face and having to leap behind various pieces of hotel furniture every time we saw that family thereafter, we had an AMAZING time. Best of all? Elin loved it too! No coming home early this time :-) The wonderful hotel (The Quay Hotel and Spa in Deganwy) you might remember had given us a free night (in a suite!) in lieu of the night we lost last Summer when Elin was poorly. See previous blog post if you so wish:
http://cerebralpalsyjourney.blogspot.co.uk/2015/07/we-are-just-back-from-one-of-most.html
They also threw in a four course meal and gorgeous full Welsh breakfast. Wow-thanks! We thought it would be nice to use the free night on our 11th wedding anniversary, so that's what we did yesterday. Difficult to image a nicer way to celebrate really- there is no place more beautiful than Wales in the sunshine and we were VERY lucky to enjoy amazing weather the whole time we were there. It was fate.

Aroom with a view. This really was the view from our suite. Woah. 

Not only did the sun shine as if it was mid August but  Elin decided to have a good sitting couple of days too (she wasn't OVERLY happy, but no dystonia either which is probably the best we can hope for when out and about somewhere unfamiliar) Hurray!! Does it get any better? She also timed a nap in her chair for when we were eating breakfast and slept soundly in her chair during the full four courses of that evening meal too! Well done, Elin!! It must have been the sea air. 
It was great that our suite was on the ground floor and also very close to the spa. This made going to the pool pretty easy. Elin was great in the pool especially given that it was not the hydro-temperature to which she is accustomed and there were a lot of children making a lot of noise. Everyone was really kind and I had the offer of help in the women's changing room from another Mum, who had her severely autistic son with her and she said, understood. These moments are small but they make you feel like you're not alone. So many people out there are dealing with issues day to day, just going about their lives trying the best they can. 
On the way home we called at Llandudno to take advantage of the weather. It was stunning. Elin made a little friend named Esme on the pier when we stopped for a drink and I met another lovely Mum who did nothing special at all except talk to us and encourage her little girl to play with Elin. Sometimes the most special moments are also the most normal. That is one of the many things Elin has taught us, the ability to see the miraculous in the mundane. I am sure my friends and their children have these encounters all the time. Forgettable within five minutes. Us? Not so much. So it means a lot when people reach out. Thank you Esme and Mummy, you were the cherry on the cake of a wonderful little holiday.
Lots of the school holiday left to look forward to and in the meantime I will leave you with some pics of Elin enjoying herself. Until next time.........xxx

                                                               

Elin's Easter pressie-a new Finding Nemo swimsuit! Yay! Beautiful.

 Llandudno in the sun :-)

 To top it all, when we got home Elin rounded off her lovely holiday with a fringe cut. She was very happy with the results!!

xoxo

Pasg Hapus Pawb!!

Happy Easter everyone!
I have decided Easter is an awesome holiday. The same glorious length as Christmas (for those of us employed in schools, anyway) but without any of the stress or trying to pack in a million commitments. Added to this, if you're lucky, the sun will come out.  Today, we were lucky. The weather was beautiful. We shelved previous plans to take Elin to the cinema to see the new Disney film (save that for a rainy day!) and decided to go to the Zoo.
It was great! Elin did really, really well with her sitting and though she needed plenty of breaks we did get some good long walks out of her! The zoo is vast and even more so now that the new 'Islands' section has opened. We were very impressed - it was really lovely and could have been a day out in itself with the different countries represented in different areas and the giant 'tropical realm' dome. Best of all though, a boat ride. I do love a good boat ride. We were worried at first that Elin may not be able to go on as you had to be able to walk for health and safety reasons (don't start me off) However, it turned out the ride had several adapted boats for wheelchairs and not only this but we completely skipped the 45 minute queue before hopping onto our special boat!! Hurray! Well done, Chester Zoo!!! It really reminded us of Disneyland (a whole year ago!!! Sigh!!!) as we are simply not used to that kind of accessibility in this country. Sufficed to say Elin lorded it up in her elevated position at the back of the boat like the Queen of the Nile!!!  Chester Zoo also have a fully equipped disabled changing area with hoist and bed - no changing Elin not the floor- so it really is one of the best places to visit in the area if you need these facilities.
Mind you, before I praise the zoo too much I have to say the entrance fee is fairly astronomical and for an ordinary family of four or five you would be looking at over a hundred pounds for the day. Jeesh! Luckily for us they do provide disabled/carer rates and I know lots of my friends have yearly family passes which work out very reasonable if you want to go a few times a year. I would definitely consider getting one of these if we could be assured that Elin would sit in her chair from one day to the next, which we can't- we just have to keep our fingers crossed and see what kind of a week she's had! Well in any case, today it paid off. We have had a lovely day and hopefully the rest of the Easter holidays will follow suit. We are going to a hotel on Wednesday, the 'Quay Hotel' in Deganwy (remember how they promised us a free night after we had to come home early in the summer when Elin was poorly? Well, we're using it- on our eleventh wedding anniversary :-) Thanks very much, Quay Hotel! More on that later in the week) and I'm sure Elin's going to love it.
Hope all you lovely blog readers are enjoying the holidays as much as we are so far!! I haven't even opened any eggs yet!! So much to look forward to :-)
Will leave you with some photo's of Elin's grand day out. xxx

 Elin absolutely LOVED the squaking of the Flamingo's!! We stayed there for ages watching her laugh :-)

Thanks Chester Zoo!  

 Elin loved the gentle ride around the lazy river, feeling the boat wobble, listening to all the sounds and the other children in the boat.

Katherine Hepburn in 'Out of Africa'. Or is it Elin????? 

 Elin looking for Sophie's Mummy in the Giraffe enclosure.

Happy Easter folks xxxx

London calling..

Hi blog fans! Elin has had an ok couple of weeks, a little up and down with a cold and cough and the odd day off school! But happy to report she is lots better and  smiling away this morning.
She's not the only one.
I have an ulterior motive for writing this post today- we've had some great news and basically I want to brag about it. Yes, I realise bragging is not attractive and it's not really in my nature normally but the fact is, this deserves a massive, showy-off , proud, BRAG.
Caitin got into Drama school.
Not just any old Drama School, one of the most prestigious schools in the whole country. Italia Conti in London.
She will spend the next three years completing a B/A Hons in Acting in this fantastic college, in a city that is renowned worldwide for its theatre scene. WOW.
This was no mean feat. She had two auditions before being accepted, both were a full day long and incorporated movement and voice workshops as well as acting performance. Each time, they whittled down the thirty or so people attending the audition as the day wore on and both times Caitlin was only one of three left standing as the audition drew to a close. This gave us hope but made the wait for the all important email on a final decision no less stressful. You see, the college have been auditioning potential students since December and still haven't finished. The incredible statistics are that they will have almost 4,000 people auditioning each year. FOR 24 PLACES. Caitlin has one of these places. I think you'll agree her achievement is even more incredible when contextualised like this! It can't be underestimated how difficult it is to get into Drama School these days, with each school mooting similar statistics to those of this particular college in term's of auditionee's to places ratio. Also only 1 in 5 of  all accredited UK drama school places go to students who are under the age of 20. Double-WOW!!!
The email arrived yesterday at 4:30pm. It was Paul's birthday :-)
Perfect.
We're off out now to celebrate and to try and distract ourselves from thinking about how Elin will cope without her favourite person in the whole world being around :-( Thank heavens for face time and Skype.
Here's to the future! Follow you dreams, folks. You neve know what could happen.
"If happy little bluebirds fly
beyond the rainbow..
Why..oh why....can't I?"