Ice Age

Elin showing how alert she can be when she is on top form! Not only has she been sitting (yes, sitting in a chair!!) for ages but she is clearly enjoying the Ice Age DVD, clearly listening and reacting. Amazing girl! This makes me so happy! A very simple pleasure for most kids but requiring utmost concentration and cleverness for Elin.  (Sorry for sideways view of video)

Mini break

Elin has really enjoyed her holiday in London visiting family! She had some wonderful presents and was mercifully well in herself whilst we were there. It was great to get a little post-Christmas break. Driving down in the evening works really well, as she is able to sleep during the journey and we were really glad to have use of the Drakemobile and it's gigantic boot! We have to take so much stuff for Elin it's unreal- plus loads of presents of course :-) Given that it was quite a flying visit and Elin's issues with sitting in her chair, she didn't partake in any sightseeing but instead enjoyed lots of cuddles and attention from our wonderful extended family. We just wish we could see more of them- why does London have to be so far away???

Merry Christmas

So Elin woke up on Christmas morning, wearing her new 'One Direction' jammies (she loves Harry the best) to discover Santa had completely ignored her this year as she is so naughty!! Haha not really she was spoiled ROTTEN. I have never seen so many beautiful presents, we are so grateful for the thoughtful gifts and love shown to her by all our friends and family (sensory story maker- you know who you are- AMAZING!! So gorgeous it made me cry). We had a lovely day and Elin was fine, although she had given us a scare the day before when we ended up on Children's Ward. She had a nasty seizure which didn't cease with the usual medication. We were supposed to be at the traditional annual village crib service at Church (it's the only time we go and it makes me feel really 'Christmassy') and instead had a bit of a mad dash to hospital. Not ideal on Christmas Eve!! The doctor wanted to keep us in for observation but I point blank refused on the basis that we are ten minutes from the hospital and we would be observing her VERY closely ourselves at home (and, mr doctor, do you not realise it CHRISTMAS EVE???) Anyway he conceded and Elin was home in time to leave a mince pie and a carrot out and get to bed on time. She was kind of woozy on Christmas day in the end from all the medication the day before, which was kind of disappointing. However we were just glad we had no more hospital visits and my heart went out to all the kids and parents on Children's Ward that day who wouldn't be escaping like us. Elins next adventure is a trip to London today to stay with family- she seems much brighter today so fingers crossed for no more drama. We know how Elin loves a drama!! A very merry Christmas to all blog fans and thank you for caring enough about our wonderful girl to keep reading.xxx

The loveliest little sheep in Bethlehem...

Possibly one of the best photo's this year!! Today marked Elin's third Christingle service at the Church by her school and it was wonderful to see her looking so unbelievably cute!! I think I might have to buy her a sheep outfit now to cuddle her in at home! Thanks to her amazing support worker too for managing to get a few big grins from her, it really made it for us.
Elin's SEN School's Christingle service is about as cute as they come.  The children and parents gathered today for carols and the re-telling of the Nativity. You would have to be made of stone not to shed a tear, as the children arrive down the aisle of the Church, looking gorgeous in their costumes and looking so happy. There is such a sense of celebration amongst the audience, of sharing in the joy and pride that these individual children bring to their families and to their school, and of course the fact that it is only a few days before  Christmas compounds everything. When the candles are lit and the Church lights turned out for 'Silent Night' there is certainly a magical atmosphere, whatever your beliefs, if any. Because ultimately every single person in the Church today, whether they be Parent, Teacher, Nurse, Carer etc could not fail to acknowledge the common faith we were all sharing. Faith in these kids who amaze us all daily. It's the most rewarding kind of faith there is.

At Last

https://www.facebook.com/photo.php?v=10151516670506854&l=7894423840378964700

This is a link to one of Elin's favourite sounds.....her big sister singing! Caitlin created this track in our spare room with nothing but a backing track and a laptop! She is still only 15 and we think she is pretty amazing ;-)

Our guiding star.....

This week was Elin's school Christmas concert. I didn't know what she was going to be, last year she was a fluffy penguin which is kind of hard to beat! I wasn't disappointed this year. In a shining example of art imitating life, she was, of course..a star. Complete with twinkling fairy lights on her costume. Could it have been any more appropriate? Actually it could, because she wasn't just a star, she was THE star..the guiding star. Quite an important job, that. Metaphorically bang-on too, since she is truly the little guiding star in our lives. She looked beautiful and really enjoyed her moment in the spotlight, smiling and playing her bells happily- with a little help ;-) Seeing her up there I didn't even cry (I thought I would) because I was just too happy and feeling very blessed to have the opportunity to be there among the other parents. It's not something I ever take for granted. I was hugely moved though, especially seeing the little classmates of Elin's achieve their moment in the spotlight too and do so well. There was tangible support from every person in the room for these kids (the concert is a mainstream school concert but includes the children from the unit where Elin and her classmates are) and it felt truly special. When Elin was carried onto stage looking unbelievably adorable, the audience all went 'awwwww!' and though I cannot feel proud of lines learned or spoken or dances practised and performed, right then and there there wasn't a prouder Mummy in the room. So, so proud of my little star. My beautiful, twinkly guiding star.

A Christmas Poem by me

The Mummy's rush around
They don't know where to start
Christmas time is coming
They haven't got the heart

The kids are too excited
The presents cost a lot
I know it is a headache
But please look at what you've got

My child does not know Santa
She cannot write a list
Christmas can remind us
Of all the things she's missed

But as we preach peace and joy
and are decking every hall
Perhaps it is our baby girl
who is the most 'Christmassy' of all

For if baby Jesus saved the world
Then died to wipe out sin
No greater miracle can be found
Than our Christmas angel,  Elin.


xxxxxx

Baby Dot is feeling better

Elin is feeling A LOT better today and at the risk of tempting fate seems back to her usual self. I know some of you Elin fans will be wondering ;-) Fingers crossed it continues and she can be back at school right as rain on Monday and ready for the Christmas Concert on Tuesday (please god!) xx

Throw back Friday....

One of my favourite's of Elin, Taken in 2009 aged 14 months. Doing a little better today, calmer and less dystonic. Hoping for a good weekend!

A day of two halves

Good news and bad in Elin's little world this week. Let's start with the good- her Orthopedic appointment in Alder Hey today went really well. Her hip joints are the same as they were two years ago when they were last x rayed and looking good (children like Elin can be at risk of their hips coming out of their sockets or becoming 'shallow' as they don't rotate, basically because there is no walking and so as the child grows they can simply put, just 'pop' out over time) there is no reason for any surgery or to even be thinking about it. Also, despite Elin's feet gradually becoming quite bent the surgeon was happy that, with the right pair of splints (which we are picking up next week) which will enable her to stand in her frame despite her feet no longer bending at right angles, there is no reason to intervene. When we asked about botox injections for her ankles to maybe help her feet bend into a more natural shape he pointed out that the benefits would only be short term and that's with serial casting too (which would be a logistical nightmare not to mention horrible for Elin) they would still eventually go back into their current position. He said he was against doing any potentially painful intervention that wasn't particularly necessary. We agreed. Crucially, he pointed out he had seen many cases where intervention and especially surgery could set off or even cause terrible dystonia , so knowing that Elin already has a diagnosis of this made him really wary of doing anything. I think we were both quite relived that she won't be going through any potentially painful procedures anytime soon and the surgeon was so helpful and understanding, really taking time to explain things and chat- it was one of those great appointments where you really feel it was worth going, not just a rushed ten minutes being ticked off a list. So now for the bad news. Sadly it seems the dystonia is back and she is not herself at all. Dystonia is a condition she was diagnosed with last January, it's a movement disorder affecting all of her muscles, fairly common in brain injured children and adults but also affecting perfectly healthy kids sometimes, too. It basically makes her muscles shake and tense-up, contorting her body beyond her control and  giving the illusion of a seizure or fit. (Pretty confusing when she also has epilepsy and her epileptic seizures look exactly the same.) Anyway, that's dystonia in a nutshell for those of you who don't know, and she has it all the time, it's just sometimes is very well controlled and sometimes it isn't controlled at all (the worst time of which saw us admitted to Alder Hey, terrified, last January). Since this year has been mostly in the 'well controlled' bracket it's been upsetting to see it return this week in such a continual loop (usually you will get the odd five minutes or so of it, then it will go again) resulting in her needing rescue medication twice since it started on Tuesday just to halt the movement. This morning was better for her and her movements became a lot more 'normal' but then came a visit to Alder Hey for her Orthopedic appointment in pretty horrendous weather conditions and coupled with a car seat it was all the ingredients needed for the dystonia to rear it's ugly head again. Half way through our appointment she needed rescue meds after several attempts by us to stave it off with cuddles, changes of position etc, and the buggy was a glorified shopping trolley to carry our bags- we couldn't even bend her to sit her in it let alone fasten any straps. I won't even go into how awful the journey home was with her in this state. So that's where we're up to and I'm just hoping tomorrow is another day and will bring better news for our girl. It was ironic in Alder Hey for me, self confessed christmas-aholic, that the beautiful Christmas tree's and lights and displays in the waiting room and corridors twinkled and reflected in Elin's big, startled brown eyes, almost mocking me as I held her this way and that, trying to help her relax, as if the Dystonia had turned up with claws and bad breath like the Grinch that stole my Christmas spirit. Dystonia. Bah. Humbug.

Chronic Sorrow

A very insightful and interesting read on the grief process of 'living loss'. Chronic sorrow by Rose Harwood. ttp://caretosharemagazine.wordpress.com/2013/11/15/chronic-sorrow-by-rose-harwood/

Throw back Friday

Oops a day late! This week's throw-back Friday pic is one from the day we got Elin's new buggy over two years ago, in celebration of the fact that we will soon be getting rid of it! Notice the blocks under her feet because she was too small for it at first! Awww!

Precious times..

....are after school, when Paul is still at work and Caitlin isn't home from school yet and it's just "me and my gal". Like it used to be, when she was a tiny baby and I was on Maternity leave and everyone else was at work or school. We can do whatever we like. Listen to some music, dance. Watch 'The Snowman' on DVD. Tell each other our secrets (ok, well maybe that part is just me, but I know she's listening) I can dress Elin up as Mary from the Nativity for a Christmas card photo and she can laugh because she likes the sheet on her head and I can laugh because she looks ridiculous and won't sit still and I can't get the photo anyway. But it doesn't matter, cos it's just us and we don't have to feel daft. Maybe we'll tell Daddy when he get's home and maybe we won't. Maybe we'll tell Caitlin we listened to the new Lily Allen track and loved it, or maybe we won't. When they get home we might just say 'we're fine, how was your day?' and I will look at Elin and know, and she will know too that sometimes, it's just us. Sometimes, I don't want to share her, I want her to be just mine, just for a short time, just the two of us in cahoots. Like it was before she was born and nobody knew her like I did. Me and my baby. Me, and my gal. Always.

The Drakemobile!

The time had come for us to take the step of getting a mobility car. Elin is getting a big girl, and it's hard to lift her in and out of a car seat. I knew I didn't want anything too big to drive so when someone recommended this it seemed like a great idea. Pretty compact, but room in the back for Elin's wheelchair and also up to two other passengers! It's like the Tardis! When the rep brought it in the Summer we loved it, ordered one and hey presto it arrived yesterday. I love it. I can't stress that enough.  I'm not going to get too technical here, I'm a girl and let's face it I know jack about cars . This is silver, it's pretty, it's quite 'gangsta' with the blacked out windows, and it smells of new-car.  That's enough for me. Oh- and when Elin isn't with me it reverts back to being a 'normal' car with three full seats in the back and a boot big enough for me to clean out Tesco Cefn in one fell swoop. Heaven. But would Elin like it? So far, no (of course). Our issues with travelling with Elin are well documented in this blog and if you are a friend of ours then chances are you're sick of hearing about it. I had high hopes that she would be ok in her wheelchair in the back, as Caitlin could sit right next to her and after all she is very used to travelling in this way on the school mini bus. Sadly for whatever reason today's trial run did not go well and had to be abandoned. Elin pulled her usual trick of thrashing around, leaning so far over to the left that she nearly garotted herself on her harness and sticking her feet out at strange angles :-( We abandoned the run in the interests of safety almost immediately. However, it's worth pointing out that I feel the fault lies with the chair, which is no longer fit for purpose, than the car. It simply cannot support Elin or hold her in a safe position. Luckily we are due a new wheelchair as soon as the last two 'fittings' have been completed in January, it's being made-to-measure, so even if her behaviour continues hopefully the chair will be able to support/accommodate her and generally keep her safe to a much better degree than the current model. In the meantime Elin's car seat will have to go back into the back seat and her wheelchair resigned to the boot, as she simply cannot travel like that particularly if there is nobody in the back with her. It's so hard to explain to people who have never witnessed her seating issues. She simply sometimes cannot tolerate it, she pushes herself into terrible postural positions and flings her arms out etc, quite often 'jumping' up and down as if she is trying to escape the chair. Not good when she is surrounded by metal. Hugely distressing for her and for us too.  So, when the new chair arrives, coated in memory foam and made to measure for Elin specifically, we are hoping that simple trips out in the car become enjoyable, as opposed to traumatic. Such a simple thing for everyone else, such a huge, huge hope for us that could completely change our experiences of getting out and about as a family for the better. Fingers crossed.

Not what we want!! This was Elin's position in her chair on returning home. Pretty bad. The journey lasted all of three minutes as we simply could not leave her like this, even though Caitlin was next to her it didn't help. This photo is for any readers who have never seen Elin having a 'bad travel day'. We need that new Wheelchair, pronto!

Throw back Friday..

I chose this for today's throw-back Friday pic because it was taken on this day in 2010!! I can hardly believe it was three years ago. This is Elin in her old stander, or 'monkey frame' which she loved, but outgrew. You can see how comfortable she used to be in it- she fell asleep! Too cute. Happy weekend folks x

Story time

Every evening before bed Paul tells Elin a story whilst I'm getting her meds together. (He also likes to play his ukelele sometimes and make up songs for her but I won't subject you to one of those!!) Elin is impressing us every day with her ability to focus for longer periods and really listen brilliantly. You know when she is listening because her whole body goes still and you can see it in her eyes. I filmed this today after hearing Elin's giggles from the other room. She is clearly a fan of 'Goldilocks' :-)

Throw-back Friday

I am thinking I might  pinch an Instagram craze here of posting old pictures  on a weekly basis. 'Throw-back Thursday' or TBT as it's known on Instagram might have to become Throw-back Friday for  the sake of my blog as I have more time on a Friday to search! Anyway, this photo marks my first offering. Happy TBF folks!

This has been stuck to our fridge since early 2009 when it was taken. As it gets gradually grubbier and seems to have inexplicably avoided my school laminator, I thought I would scan it and save it in cyber space before it get's completely ruined. This was the first time we visited Hope House, a local children's hospice and amazing resource for parents of children with life limiting (actually hate that phrase to be honest) illnesses or conditions. We don't actually visit anymore since sadly they stopped being able to provide regular hydro therapy sessions, as for us family support  means currently we rarely need overnight care or respite for Elin.  However, that doesn't mean we were not able to appreciate the AMAZING work this hospice does and how wonderful the staff are. We know kids that have been going for years- it truly can be a second home. Everyone there is incredible and really puts family's at ease at the most difficult times in their lives. What a great thing to have access to these places as an option for parents in our situation in this country. The parents of children like this  in America for example  are not offered the same service, it doesn't exist. To think it relies totally on charitable donations blows my mind. In 2009, not long after this picture was taken, my work colleagues said they wanted to raise some money for Elin. We immediately nominated Hope House on her behalf, such was the extent of the impact the place had on us. In the end we raised £3,000 for Hope House by climbing Snowdon but recently I've been thinking it's time for a fresh challenge and I know my amazingly supportive colleagues are up for it again. Not sure what but Im thinking if Cheryl Cole can do Kiliminjaro then...........?????  :-)

Happy Hallowe'en!

If you want the Rainbow, you gotta put up with the rain.....

...said that famous scholar and wise intellectual....Dolly Parton! Fairly apt for our windy adventures in Windermere this half term as you can see!

So after days of BBC weather warnings forecasting the worst storm since Michael Fish almost wrecked his career back in the 80's, it was with some trepidation we headed out to the Lake District for a mini break which had been booked since August. However, luckily for us and perhaps unsurprisingly, the storm turned out to be more of a  storm in a teacup (though it was wet, VERY wet). The biggest surprise of the break was how great Elin was and how tolerant of the bad weather, the change of surroundings, and being away from home in general. Don't get me wrong, she wasn't a fan of her buggy. But she was able to manage it for short periods. All other times, she tolerated the pouch/carrier brilliantly! This combination enabled us to spend a wonderful day going over from Bowness to Ambleside on the boat and having a leisurely stroll around the shops there. The rain lashed us and I worried about how this would affect Elin, I thought it might dis-orientate her but she seemed to relish the new sounds and sights and general assault on her senses! It was lovely, to be taking our time, with a happy Elin, like the other wrapped-up families huddling in the doors of cafes and shops.  We stopped for a re-fuel during one particular downpour and Elin expressed her distaste at the situation by weeing all over Daddy's knee! (Haha result, I had just passed her over to him. She knows which side her bread is buttered!) So off I trotted with her to the disabled/baby changing. Turns out it was less disabled and more baby. Elin has just become too big to fit on one of those fold down baby changing stations. The only  concession I could see to the disabled was extra room and a handrail. Luckily I carry a special sheet for occasions like this but never really had to use it. I really didnt enjoy changing Elin on the floor of the toilet, but there was nowhere else to do it. A full change of clothes was needed too- not easy. Thankfully she is still small enough to pick up from a lying on the floor position. But it kind of hit me, rather ridiculously I guess for the first time, that when she is bigger these things will have to be meticulously planned, that you would have to be sure anywhere you were going had a full range of disabled facilities, not just wheelchair accessibility. (Our local shopping area has a really good one thankfully) It's probably fairly easily worked out, it's just something I hadn't considered. Hmm. Stick it on the back burner for another day. In the meantime I am just grateful we had such a lovely break and most importantly of all that Elin enjoyed it. I was so proud of her. The last time she was there, she was an embryo inside my tummy right at the start of life and we had no idea what lay ahead. We couldn't know back then that our amazing daughter's life would certainly bring plenty of storms, but definitely and undoubtedly more precious and beautiful rainbows than rain, any day of the week. Right there with you, Dolly ;-)

Elin sneaking around on Daddy's back! Cheeky!

Brrr. Lake Windermere.

Elin loves (fake) fur!

Not sure about this boat thingy, Mummy!

Ahh dry land, that's better!

My Pumpkin

My Pumpkin made a Pumpkin at school today with her super special helpers and teachers! She is pretty chuffed with it as you can see.

Happy half term everyone- it's been a long time coming! 

Cos you gotta have faith..

Not being of a particularly religious persuasion I found myself crying at Songs of Praise today. Yup, I like a bit of Songs Of Praise! Think it reminds me of being a child and that Sunday cosy feeling and the hymns sound nice and remind me of my happy school days! Plus Elin likes music and we watch it together. (Just don't tell anyone we watch it ok? It will totally ruin our street cred).  Anyway this guy was talking about his faith and how he was on the streets and an alcoholic. Then he was saved by a Christian group and his faith has pulled him through. It was so moving to hear him speak and especially how he had turned his life around through his beliefs. Then another lady told her story of how she was a single mother with four children in a new city and feeling alone, and her faith pulled her through. Very emotional. But ultimately I have to admit to feeling something akin to jealousy. How wonderful it must be, to have such unwavering faith in something? Even when things are going horribly wrong for you, to know that this is a pre-designed path and that you are meant to be on it, and everything will turn out ok....and if it doesn't, you will have the strength to deal with it.  It must be such a comfort and it's a comfort that can be definitely missing from your life when you have a child balanced procariously on the edge of good health all the time. I am not about to become hugely religious. But it got me thinking. All those times people tell you that 'God doesn't choose parents who can't cope, that's why he sent Elin to you' (and you want to punch them in the mouth, hard)..that's just what they believe. That there is a plan for everything and everyone. I can totally see the appeal, because a lot of this journey is a struggle to understand, and a repeat of the question circling in your head...why? why? why??That is a question that fades with time but that I really hope to lay to rest for good one day. Although, for the time being I cannot put my faith in the God I prayed to throughout pregnancy for 'everything to be ok with the baby' , i will believe instead in friendships, family, and love. For now, that will be the faith that pulls me through, as we are lucky because thanks to those that surround us, it is a faith that never wavers.

Feeling better

It's been a loooooong time coming but*tentatively touches wood* Elin is feeling better! After my last post she actually ended up getting a bit worse, so we have ended up with the second week of illness for poor Elin and an admission to Children's Ward. Luckily it seemed to sort her out and the Drake household is holding it's breath and hoping that is truly the end of it. Not seeing this smile every day has been thoroughly depressing and not a situation I want to repeat anytime soon. Just got to beef her up again now after the self induced diet! The supermodel waif look doesn't really suit our Elin :-)

Poorly days!

The photo says it all! Elin has had almost a week off school- unheard of! An exploding bottom and some very nasty facial viral cold-sore type things have meant she has needed to stay at home. She has been completely lethargic and drowsy and basically has been lying around being cuddled all day like a little lop eared rabbit! A visit to the ward on Friday reassured me that there is nothing sinister going on- it would seem her body is reacting to the antibiotics she had a fortnight ago (something to do with good and bad bacteria. Ashamed to admit he lost me a bit in his scientific explanations. This is because he talks very quietly and quickly and is nothing, I repeat nothing to do with the fact that he is the most gorgeous doctor you could ever wish to meet- I'm talking swooning/ooh Mr Darcy/very difficult to concentrate gorgeous!) Doctor Darcy prescribed yakkult!! So far it has worked and the exploding bottom has disappeared but the sores on her face (cheek, ear and lip) are making her look like she has some sort of biblical plague! They have started to yellow and crust over (sorry) but yes, she still looks like she has leprosy. I think based on this she may have to have tomorrow off too - I hate it when she has to miss school but she looks bubonically infectious (even though she isnt).I know school hate it too and will be missing her! The only saving grace is that I don't think they are sore for her. Let's hope she can return on Tuesday and normal service will again resume for this little household and our baby bunny xxxx

Show me the gas and air...

I am late writing this post, I got way-layed! Nevertheless it was an important moment and I need to share it! A few weeks ago a lovely acquaintance of mine asked me to write a piece for her blog. This is a blog I have long admired and moreover, it was a blog for 'ordinary' Mummy's i.e no 'disability' focus. The author, Clemmie, is a midwife and Mummy of two and the blog features, among other things, a weekly 'birth story' . I was asked if I would mind submitting Elin's birth story and a bit about what it was like bringing up a child with disabilities. I was so pleased to be asked and I jumped at the chance. I was just so chuffed that the author of this amazing (and popular!) blog would choose to include a story like mine, which in terms of birth stories did not really end happily (in the 'ordinary' sense). Sometimes, I can feel very left out when people, inevitably and in various random situations,  discuss their birth stories. It's a kind of rite of passage, isn't it, for women. A common theme, something to laugh about and share. It's a bit like being in a club. Those who have not been through it can never know what it's like or even begin to imagine. It unifies Mothers everywhere, from discussing how helpful (or not) your partner was to the more gruesome tales of numbers of stitches and hours spent pushing. But these stories, they always end with a laugh or a wry smile, because (almost always) it turned out ok. The story had a good ending. Everybody lived happily ever after. My story is different and thus not really appropriate for light-hearted situations. It can be a bit of a conversation stopper, or more so- something I don't want to get into to fear of bringing the atmosphere down. So when Clemmie asked me to write MY story, for her blog which is being read by a lot of Mummy's but also pregnant ladies, I felt an overwhelming sense of gratitude that someone was including us in the whole 'birth story' situation. I was also terrified about writing a really naff piece, or a piece that would upset or worry and pregnant ladies reading it (what happened to Elin happens in about one in 1,200 births- stats which are still not low enough in my opinion). Also, I didn't really know what to include. Truth be told I could write a book about the first four weeks after Elin was born, such was the magnitude of what was happening and the amount of ups and downs. Anyway, I wrote what I could, from the heart, and Clemmie was kind enough to publish it on her wonderful blog. I was humbled to learn that she had many wonderful responses to it and I have gained a few more followers in the process, too. So, if you are a fan of blogs, follow this one. Clemmie gave me a chance to feel like our story was nothing to hide away and it meant a huge amount to me. Also- it's a  bloody good blog :-) P.S If you want to read my post, just scroll down the home page until you find it. .http://gasandairblog.com/

The kindness of strangers.....

It's in the little girl in the waiting room wearing the same dress as Elin, in the same size, joyfully chattering away and showing us  her new shoes and showing Elin how their dresses match though she gets no response.
It's in the consideration of the doctor asking Elin which sticker she would like for 'being brave' even though she knows she cannot answer, and I will answer for her (the penguin one please, we like penguins)
It's in the face of the balloon man making a flower for Elin as we pass by, making it pink, because she is a girl and handing it to me with a smile when she does not reach out to take it from him
It's in the cheery pat on the head the bus driver gives Elin every morning and the greeting 'Alright Chicken, ready for school?' never disuaded by her silent gaze
It's in glances in the coffee shop, the desperation not to stare, the smiles directed our way, the universal 'bless her' sound 'awwww'
It's in the grandma in Marks and Spencers who I have never seen before or since who touches my arm as she stands next to Elin's wheelchair and says 'you're doing a wonderful job you know'
It's in the shop assistant who let's me sit on a display chair because Elin is crying and needs to come out of her buggy and wraps my gifts super-fast and gives me two free carrier bags for all the other stuff we're trying to shove under the buggy so we can manage a bit easier
It's in the traffic warden who doesn't punish us even though I forgot the blue badge
It's in the comments from friends of friends on a video I posted online of a small achievement of Elin's, they think it's 'incredible' and 'awesome' and 'wonderful'
It's in the Tesco cashier who saw us in the paper regarding rights of the disabled and tells us to 'keep fighting, good for you!'
It's everywhere,
Love (it's all around you...)
And it's amazing

Elin answers Mummy- watch to end (amazing) :-)

And please exuse the fact that apparently I laugh like an evil witch!!

All the small things...

Elin seems better! Fingers crossed the antibiotics have cleared whatever was upsetting her. Yesterday something really small happened, but it was the best part of my day. After arriving home from school and having spent quite a while on the school bus Elin had to endure an immediate trip out in the car to go and pick Caitlin up from the school bus- not ideal considering how much she hates travel- the school transport home is normally quite enough for one day! Anyway Daddy wasn't home in time to save her from this fate so she had to come with me. Predictably she cried (loudly!) all the way. We stopped at the bus stop for Caitlin and she got in and having had an eventful day began filling me in straight away. I watched Elin's eye's widen in the rear-view and she stopped crying, immediately. She had, without a doubt recognised Caitlin's voice and was listening intently. Her eyes were darting everywhere as if looking for her sister. Then, suddenly, the biggest grin you have ever seen spread across her face and she began laughing-really laughing. Bear in mind as she had been poorly for a good few days, we hadn't seen many smiles recently. She was still in her car seat, the car was still moving. It was an undeniable reaction to Caitlin and nothing else. It was absolutely joyous to see and as Caitlin bent around from the passenger seat to make a huge fuss of her I was reminded of the worst phrase anyone had ever uttered to us about Elin during the past five years. A consultant, who prophesied when she was four months that she would never be, quote "A thinking person". Well guess what..I think she was thinking. I think she was thinking she was really glad to hear her sister's voice and she couldn't wait to get out of her car seat for a cuddle. A small thing. But such a big thing for us. In your face, doc. What do you know? :-)

Sick September and an aborted walk...

Well it's September and as most parent's will know this means bug-time. Mercifully Elin has had an amazing transition back to school after the holidays and though September is a notoriously difficult time for her health-wise (and also because of the change in routine being back at school five full days) she was doing amazingly well. Note: When your SEN child is doing amazingly well, approach with caution!! Yup, that's right, I spoke too soon. Elin's not bad, but she's not right. A trip to docs on Friday after school and we came away with diarreah-inducing antibiotics, but full of hope that they would clear up what we suspect is a urine infection. Urine infections are not only a nightmare for poor Elin, they are a nightmare for us too because they often involve the dreaded urine sample.  Luckily the lovely doctor agreed to antibiotics without one but pointed out in would be best to drop one of if we could. Most parents will identify with the dreaded attempt-to-collect-urine situation. When your child has issues like Elin's it's worse- she cannot show us when she is ready for the loo. I have sat for hours with her over a tin pot before now, when the hospital (un)wisely got rid of the bags you used to just stick onto her and wait for her to wee. In fact, trying to catch a urine sample when she was poorly once, then getting one and knocking it over was almost soley responsible for one of my few and far between complete meltdowns (the kind when you have to have a cuddle from your Mum, cos that's all that will do). Anyway, I digress. My local docs is not as forward-thinking as the hospital and they gave us a bag to stick to her (hurray!). Elin managed to hold in a wee from 11:00 this morning until 4:30!! But she finally did it and yup, you guessed it, as I delightedly and carefully un-stuck the bag, the urine gleefully poured out in front of my eyes through a hole in the bottom. I could have cried. I didn't, but I could have. Luckily I suddenly remembered a urine catching kit I had from last time we needed it and she is currently wearing an attractive pad which she will hopefully saturate soon (but probably won't) so I can then suck out the urine with a syringe and pour it into a sample bottle. I'm keen to get her urine tested as something is bothering her and I'd like to cross it off the list. During this time today we attempted a walk outside in one of the hottest September weekends ever with one of my lovely friends and her two daughter's, keeping us company whilst Paul and Caitlin are in London for the weeknd. Elin was not having it. Back to thrashing around, leaning over to her left so far she was almost bent in two (and her butterfly harness horribly pressing against her skin) then finally 'jumping' up and down in her seat, pushing with her feet so her legs are almost strait (and look painfully close to snapping in two!!) This is massively disappointing given how wonderful she has been since the start of term. I cannot stand to see her like this, it's unbelievably upsetting, We had to turn around and come strait back home (even though I had got her out twice to try and placate her!) I can only hope it's as a general result of feeling 'under the weather' and not yet another backwards step. She is having a new buggy in the next couple of months I can only hope it's sooner rather than later and moreover, that it makes a difference. 

*Video won't upload!*

It's nothing like being in Holland!!

This is a wonderful piece written by someone far more articulate than myself about that poem "Welcome to Holland". Every parent of an SEN child will know this poem because loads of people tell you to read it when you discover the unthinkable about your baby. Like the author here, despite the poem being undeniably uplifting, it always bothered me. I found it slightly patronising and pretty rose-tinted. Read this guy's response to it, because frankly I couldn't have put it better myself.

http://not-hothead-yet.livejournal.com/703116.html

Autumn day's when the grass is jewelled......

Well it's the second week in September and Autumn is fast approaching. My slippers have replaced my birkenstocks, I'm thinking about putting the leccy blanket on the bed and yesterday Paul lit the first fire. I'm glad. I love Autumn. It's my favourite season. Obviously I like the sun and the Summer- who doesn't? But I sometimes feel the gap between 'normal' (I use that word very cautiously) family life and our life more readily in the Summer. Summer is a time for getting out and about, for day trips, visits, swims at the seaside, holidays, sunbathing, spending time in a beer garden, going to the park. Stuff that can be hard for us, especially if Elin is not in the mood to sit/travel.  It can feel like we're missing out, it can make me think about what we could be doing. There is not a more dangerous phrase for your psyche, believe me, than one which starts with 'If only......'. So Summer, despite it's advantages, can be difficult for me. Not so with Autumn. The first time it's dark before eight, I feel like celebrating. I woke up this morning and noticed the leaves on the tree outside our bedroom window had just started to turn. We are surrounded by tree's and Autumn is simply stunning by us. I was elated. You see, Autumn and Winter narrow the gap. It's beginning to get cold, windy, rainy. Most families enjoy snuggling up together, not going very far, spending a lot of time indoors. Like us. Our way of life becomes the 'norm' for everyone and in simple terms it just makes me feel better. Less guilty over things I should be attempting to do, less sad when we try and Elin does not enjoy them, less distraught that we cannot have the day out we would ordinarily have chosen, less introspective about the could-have beens- for all of us as a family. Oh- also, Elin looks pretty cute in a wooly hat :-) So, hello Autumn I missed you and the comforting crunch of the leaves beneath my feet and the sight of my breath in the air. By next Easter I will forget how I feel about you and I will be silently pleading for the Summer to arrive so I can pack away my UGG boots and get some Vitamin C into my skin. But for now, our love affair shall continue toward Christmas, my absolute favourite time of year bar none...but that's another story....
"Autumn days when the grass is jewelled
And the silk inside a chesnut shell
Jet-Planes meeting in the air to be re-fuelled
All the things I love so well
So I musn't forget, no I musn't foget
To say a great big THANK YOU
I mustn't foget"

Jolly-days

Just back from our holidays! We go, every year now, to Porthmadog which we absolutely love. I'm not going to lie, sometimes it hurts that we can't go abroad. I know people do, of course, with kids like Elin. With meticulous planning, the right medical insurance and travel company, it is possible. But it's not for us. I am a nervous traveller at the best of times so the thought of travelling a few thousand miles with Elin (who as you know hates travelling anywhere altogether) leaves me a bit clammy to say the least. What if our luggage got lost? What if her medication got broken or lost? How would I even begin to pack when we needed an extra trailer just to get to the North Wales coast for all her equipment/feeds etc? I sometimes feel I should be braver and just take the bull by the horns, but how much would I be able to relax? How much of a holiday would it be? Also, Paul points out rather sensibly, we should always ask ourselves 'What's in it for Elin?' in terms of going abroad, probably not much. She does not react well to heat and the sun marks her skin as well as setting off her eczema. It would probably all be too tiring and confusing for her, since she is so reliant sensory-wise on her environment. So it's not to be, but since Paul and I always went abroad before she was born and loved it, it is something that I daydream about now and then (one of many things!) However, alongside this is our love of the coast, and in particular Porthmadog. Luckily, Elin shares our love (it must be in her blood!) and it seems a rainy week in North Wales is her idea of heaven. She was such a good girl whilst we were away, calm and happy and even tolerating her chair now and then (we used the good old pouch for places the chair could not get to, or when she was fed up). She loves the caravan, I think it must be something to do with the sounds and how everything in a caravan is amplified. She loved spending an intensive week with Caitlin and her best mate Lydia (Elin revels in their teenage chatter and banter. I think she wants to be a teenager herself!) So a good week was had by all. It may not be everyone's idea  of heaven, but give us a caravan on Greenacres and heaven is definitely where we are :-)

In the caravan with Mummy

 Which way's the beach then???

 I want to be a teenager, too!

 Watching ribbons on the beach :-)

 Wig-wam fun!

 It's so funny being in Daddy's pouch!!

Portmeirion

 Brits on holiday!

 We are not leaving the beach!

A brief encounter..

The other day we took Elin to a popular local spot for a day out. It was a sunny day and teeming with people enjoying the weather and the start of the school holidays. We decided to abandon Elin's chair and take her down onto the rocks on the river where scores of families were already enjoying themselves. It meant carrying her, which is getting tricky, but it was worth maneuvering the deep stone steps to sit on the rocks with her and watch her listening to the flow of the river and the splashes of the other kids as they paddled in and out. I had already noticed a few people watching our descent onto the rocks, the unstrapping from the chair, the shifting Elin's weight about on my hip whilst trying not to catch her leg splints. I wondered fleetingly what these people are thinking, do they wonder how old she is, what is wrong? Mostly people just smile, on this occasion we got the offer of some help with her chair which was lovely. Anyway, in terms of people looking (or is it noticing?) I find elderly people and children are the most astute. Nothing much gets past them. So it wasn't long, once settled on the rocks and enjoying the sun, before I saw a little girl. Not looking at us, but staring. Transfixed even. Trying, I assumed to work out why Elin was being cradled like a baby and holding herself like one too but was obviously much, much older. I didn't mind, I really didn't. There is never any malice or ignorance in a child's stare, just interest. Anyway I carried on talking to Elin and Paul and forgot about the girl and her big brown inquisitive eyes. However pretty soon I noticed she was approaching us, with her Mum. Pretty unusual. People, though friendly, seldom actually speak to us (almost as if they are too frightened of somehow inadvertently causing offence. In contrast to this, I, on the other hand will speak to anyone who will listen!). The Mum explained that she had noticed that the little girl, who was six, was staring at Elin. She said that she is teaching her never to stare, but that if you find someone or something interesting or you want to find out about them, then you should just go and say hello. So the little girl said hello (still serious, thoughtful) and I told her a bit about Elin, and why she was wearing funny splints on her legs and that she was smiling because she could hear the other children playing in the river. The little girl nodded a lot. I had a little chat with the Mum then they were ready to be on their way. Before they left us though, I thanked her and told her I wished everyone had the same attitude as she did and the courage to ask about what they didn't understand, even if there is a fear of being rebuffed. So thank you little girl and your Mummy for being brave enough to say hello to us. Would I have approached me had I been that Mum and she been me in a parallel universe? The truth is I have no idea. I wouldn't know then what I know now. My life would be totally different. But I certainly hope I would and would encourage anyone reading this blog to do the same. You never know, it might just make someone's day :-)

Our Day Out

Well Elin has had a fab day out today with her little buddy Megan! We have been to Park Hall Farm before but today was particularly noteworthy due to the length of time we spent there without Elin getting too upset or stressed with the buggy situation. We have been creating 'buggy situations' daily, even if we don't need to go anywhere and some of these have been successful outings, others have not (frustrating as ever). Now don't get me wrong, she didn't love the buggy today, but with various distractions she wasn't in and out anywhere near as much as she could have been. I love Park Hall because everything is close together and there are plenty of places to sit (pitt-stops where I can get Elin out of her chair if needs be) so we don't need to stress her out too much. Today, despite the warm weather, she excelled herself. In fact we were there from 10:30 until 4:30- unheard of! So proud of her! How wonderful to be able to be 'out' and enjoying ordinary school holiday family activities without Elin becoming too overwrought. Determined to continue daily 'buggy activities' so as not to undo all the hard work Elin, her teachers at school and her physio's have built up during term time. So far, so...not bad :-) :-) 

Feeling breezy....

Just a little photo for a certain someone who I know will be checking this blog wondering if Elin is having a good Summer :-). Today we picnicked at Ty Mawr with friends and Elin decided she loved roundabouts :-) This is one of my favourite photo's ever because she was laughing like mad when it was taken, loving the wind in her hair. We will have to put a roundabout on her Christmas list. Happy Hols everyone!

Elin's party- Just a couple of snaps :-)

Five years ago on Monday......

We simply had no idea if Elin would live. Each 24 hours was precious and miraculous.  You know what? Each 24 hours is still precious and miraculous.  I could not look at these photo's for the longest time, because I remember what I was thinking when they were taken and I could not go back there, in my head. But now they give me joy because on Monday Elin turns 5 and when we took these photo's we had no idea if the day would come. 5 was the 'age' they gave us. She may not make the next 48 hours, even if she does she may be so poorly she might not live to see her 5th birthday. Well, she did.  And she did it in style. So, so much to celebrate. Thank god for you, Elin. We love you with all our hearts. Happy Birthday.

We already had our miracle...

I suppose you have to remember that things were different 50 years ago. Elin would not have survived. It's only medical advances in about the last 15-20 years that have meant she is still with us today. 50 plus years ago, even 30 years ago, there simply would not have been the technology or advances in medicine to save her initially when she was born and then keep her alive. There were, consequently, a lot less severely disabled children around. If any children similar to Elin did make it through, parents were actively encouraged to 'give them up' or place them in homes where they could be cared for by medical staff. So all things considered you have to realise lots of elderly people simply aren't used to dealing with children like Elin. It's just not in their realms of comprehension. Not all elderly people are like this of course, just some. They love Elin, of course they do, dote on her in fact. But they constantly ask the same questions, hoping for a different answer. Will she ever eat orally? Will she speak do you think? Can't you take her abroad to get her 'fixed'? No. My answers are always the same, but they take no discouragement, especially if they have seen something on the news or in the paper about a miracle story (inevitably a child with a completely different condition or prognosis to Elin, but this seems not to matter) . How can they realise how these questions pain me, not in themselves but in there continual repetition? My answers will never change. There is no 'cure'. The person in the village who had a car crash and was told they would never walk again and is now absolutely fine with no issues bares no resemblance to our story. It cannot happen for Elin. The miracle has already happened, because she is still here and she is still breathing, that was our miracle and I'm pretty sure we won't get dealt another one. It's not like I don't want to be hopeful, there's plenty to be hopeful about, but within the realms of what we know to be possible. I can even learn to stretch the boundaries of what might be possible but I cannot spend my life wishing for the impossible. Not only is there simply nothing worse than false hope, but it feels like a betrayal. It's hard to explain. I suppose ultimately I want everyone to just finally accept Elin for who she is, and that the prognosis cannot change, but the way we view it can. It's a hard but necessary lesson to learn. It's to continually wish things were different, or hope a doctor in America somewhere can wave his magic wand over her that feels like the betrayal, it's like saying you want her to change. Of course I wish things had been different at the start. Of course I wish she had the life she was meant to have and that she deserves, but until someone invents the Tardis for real or can turn the clock back five years and change what happened the day she was born I will stick with counting my lucky stars every single day for what we have got, not what we haven't. “We must let go of the life we had planned so as to have the life that is waiting for us”-Joseph Campbell

Elin listens for Daddy coming in....

I love this! You can clearly see Elin listening for, then looking for, Daddy when he get's home from work :-)

An alien from the planet technology...

Today work started on Elin's ceiling tracking hoist for her bedroom/bathroom. An amazing piece of kit that cost thousands of pounds (thank the lord for DFE grants) which should save our backs and provide Elin with an amusing ride in the process. Hoorah. Oh- did I mention I hate it?? I have a total and completely irrational hatred of the 'The Hoist' (it even sounds alien and sinister!) A hatred which far exceeds any feelings about other specialist inanimate objects that are necessary in our lives now. I even put off getting one because I could not bear to have it dangling in the corner of Elin's beautiful room like an evil science fiction- esque spider. Looming over us like a constant reminder of technological intervention eventually needed in Elin's life just to get her up every day. A reminder of hospital wards and homes, like the old folks home Elin's grandad lived in during his final few years with us. Not for my daughter, The Hoist. I don't want The Hoist for her. But choice is something I have learned to relinquish to a degree in our funny topsy turvey world. It doesn't matter whether I want it or not, I have to have it. Elin will need it. The Hoist must become part of our lives. One day I will not lift Elin as I do now, almost wearing her on my front like a koala bear, one day she will be too big and I will have to lose that extra bit of contact, that part of her still being my baby. So to me I guess The Hoist is an unwelcome but necessary divider between myself and Elin. However as sure as I am of my hatred of The Hoist I am equally sure that like everything else acceptance will reluctantly follow and in a few short weeks I will probably forget it's there, or wonder what we did with out it. I may even one day be singing the praises of The Hoist. For now though I shall park it in the corner of the room and refuse to give it eye contact. I'm not ready to be it's friend yet. As a literary heroine of mine Scarlett O Hara once said "I'll think about that tomorrow".

A new perspective

So Elin has been at her SEN school for almost 2.5 years. I can't believe it! Yes it's a cliche, but where does the time actually go? I remember when she started like it was yesterday.  Anyway, since Elin started school we have often commented how great it would be for Caitlin (Elin's sister) to get to see her at school. She spends so much time with her at home, but to see her at school is to understand her world entirely. For Caitlin, who is 15, school means something very different than the experience Elin has each day, for obvious reasons. However it's not just the  curriculum variation that we wanted her to appreciate. Seeing Elin in school I think, can be a little light-bulb moment. It's not just about fully grasping the potential Elin has and the full range of activities which she takes part in each and every day in order to help her reach this potential. It's about seeing the other children too, and feeling the atmosphere in the classes and the tangible love and caring that passes back and forth between the staff and the children. It's not really something that you can explain, or take a photograph of. It's just in the air. And it's Elin's world. After all, technically during the week she almost spends more awake-time in school than she does with us! Given all this, it's mad that we had not managed to get Caitlin there sooner. However, Sports Day at Caitlin's school provided an opportunity for us to take her out for an afternoon without worrying about her missing too much. So, this afternoon she came with me to Elin's school. Needless to say she loved it as I knew she would (you can't not, really). I loved it too, not because I haven't been there  a million times but because I was seeing everything with fresh eyes, through Caitlin's perspective. A sensory story in the dark room (or is it the light room? I'm never sure) about the Billy Goat's Gruff involving lots of textures, sounds visual stimulation and did I mention FUN? Then texture rhythms where the children listened to some music (Caitlin massively impressed with Beyonce and Will.I.Am featuring on the soundtrack to this activity!) and have different object and textures to feel/ stroked over them. Elin LOVED this and so did we. It was actually quite moving for Caitlin (and me of course but I cry at the drop of a hat!) to see how much Elin is adored by people outside of the family unit. I think it made her glad, as it makes me glad, that she has a place and people like this in her little life, who care so deeply about making her day fantastic, every day of every week, of every month. Lucky, lucky us. Finally Elin took part in a parachute music song which was very exciting for her and her friends and again, more sensory stimulation. To end our visit we got shown around the rest of the school, meeting the amazing kids and the fab hydrotherapy pool and soft play area. Caitlin at this point wishing she wasn't in mainstream school anymore I think!! It was a lovely afternoon and what strikes me is the school didn't have to agree to it (can you imagine that happening in mainstream? I teach there and believe me it probably wouldn't) but in typically accommodating fashion school understood and encourage close  relationships between home and school- in particular with siblings-and allowed Caitlin this glimpse into her sister's world when she is away from us (this unchartered territory, this mythical place 'Elin's school' which is now a reality for Caitlin and a frame of reference for her during conversations and news from Elins school day in the future), and we are made up that they did. Such a little thing. Yet such a big thing for a teenager who loves her little sister more than anything and vice versa. I will leave you with a text I just got from Caitlin  " Thank you again for giving me the opportunity to go to Elle's school! It was lush, honestly, I LOVED it xx" Says it all, really :-)

Father's Day

My name is Elin, five I’ll soon be
my start in life not the best it could be,
The person who`s made things easier for me,
is you who is more than a dad to me.
A crutch to lean on as I can’t walk,
you are my voice because I cannot talk.
I always have you right beside me,
you`re more than just a dad to me.
Whenever mum has her days of feeling down,
you make her laugh and wipe away her frown.
There`s no one else who I`d have to be by me,
you`re more than just a dad to me.
You nursed me when I was in my hospital bed,
I could see you hid the worry and dread.
You keep your spirits as strong as they can be,
you`re more than just a dad to me.
Others will never know how difficult it`s been for you,
you never moan, and there`s nothing you won`t do.
There is a lot you need to do for me,
You`re more than just a dad to me.
Looking forward I hope the future is bright,
for my special Daddy won`t give up the fight.
My name is Elin, five I’ll soon be
You`re more than just a dad to me.

Fun in the Sun

It's been a wonderful, sunny weekend. One of those weekends where, even though you are in a back garden in Wrexham, if you squint a bit and use your imagination you could almost be abroad. Almost. I love weekends like these (who doesn't?) but, in the past they have been a little tricky. You see, Elin's Daddy and I are sun worshippers. We love the sun, we used to love going on holiday and lying by a pool all week. But Elin does not follow in our footsteps. Her condition makes it difficult for her to regulate her own body temperature, so she can become quite hot and bothered. Added to this, she has terrible eczema. This, we are assured, is not part of her condition. Just bad luck (go figure!). Her eczema is sun-sensitive so as soon as the summer comes poor Elin breaks out in an angry, red rash. The cream we are currently using goes some way to combatting this and for the first time in the history of Elin, she has been out with us all weekend in our beautiful garden and loved every second. This has been aided by our recent purchase- a double-sun lounger with giant shade, which means Elin can lie outside and have plenty of room to stretch out, without being bitten by bugs, as she is raised off the floor, or being hit by the sun's strong rays. Brilliant. Oh- and there was a small matter of a paddling pool to add to the fun, too! Quite difficult trying to keep Elin supported in order for her to enjoy a paddling pool, but worth the muscle cramp in my legs to watch her enjoy splashing around like all the other kids in Britain this weekend. "Throw those curtains wide, one day like this a year will see me right" (Elbow) x

A must read

This article helped me so much when I read a few years ago. Life with Elin at the time was transcending from the chaotic and bewildering to the absolute norm. Everything had begun to feel easier, less painful and I was starting to make sense of our 'new world', the shock and emotionial turmoil which had ensued from Elin's diagnosis at birth slowly but surely ebbing away. When I first read this it was like the author of the article had got inside my head and was able to express my thoughts and feelings about raising Elin, far more articulately than I could! We subsequently bought her two children's books, 'Just Because' and 'Sometimes' , which feature her own profoundly disabled daughter and make no concessions towards this fact, simply portray her as she is. I absolutely love the books and have bought copies for children of family friends, to help them understand that there are other children like Elin around and that, in their own way, they are simply perfect as they are. http://www.independent.co.uk/life-style/health-and-families/features/profoundly-disabled-we-wouldnt-have-her-any-other-way-2072088.html

Baby Dot pictures :-) x x

Some half-term pictures. Couldn't resist including the last one after all- school plaits :-)