Tale as old as time...

Well it's been a dream of a half-term for Elin. Despite Storm Doris succeeding in ruining our fun to a degree (in the form of a cancelled hotel room-dammit!) we still had a wonderful week.
Keep it to yourselves, but Elin went on yet another Chester Zoo-date on Monday with Llew, her boyfriend from school. I coached her beforehand on 'treating them mean, keeping them keen' but it soon became apparent that Elin had decided playing it cool was just wasting time.....

DOH!!!

Also, there were hardly any animals out. They clearly enjoy half term as much as most parents.Thus, there are no more pictures from our trip, it was also pouring down (of course, it was the Zoo at half term after all!) and the busiest we have ever seen it there. But as always well worth a visit anyway- so flat for wheelchairs and an amazing fully-equipped disabled changing station- and Elin and Llew definitely appreciated their time together! I am absolutely convinced they recognise one another, tuning into one another's sounds like two baby dolphins. Who knows maybe they even have their own language- I'd like to think so :-) So cute :-)

On Tuesday we met a rather scary new orthotist and by scary I mean she was militarily-efficient and had eyes like a shark that penetrated my very soul with every piercing question she fired at me about the ineptitude of Elin's footwear and AFO's. She wasn't happy with things (neither have we been for a long time) and once she had the bull by the horns, the lady was NOT for turning. That said, I loved her. Give me someone Trunchbull-direct that finds out what she needs to know and creates a proper plan for Elin's feet over a soapy mum-pleaser any day. I don't want to be your friend, I want you to do your job really well and look after Elin's feet. And boy does it sound like the Anna Wintour of the orthotics department is going to do that (erm.....she's not going to read this, right?!?)

On Wednesday we were supposed to be going away and staying in a really nice hotel in Llandudno. Llandudno, like Chester Zoo and Norfolk, is flat as a pancake. So perfect for Elin's chair, which is why it remains one of our favourite destinations. It could do with a decent disabled changing station somewhere but it's not a place that exactly rolls with the times, so maybe in the future?! But then Doris happened. Nope, not some gangster granny that goes to bingo with your Nan, it was a storm (seriously they couldn't think of anything better than Doris?) We were a bit worried about driving back on Thursday down the devils highway that is known as the A55 in the midst of a red weather-warning so like the true Brits we are we didn't stay at home we just resolved to go for the day instead. Everyone knows the best time to go to the beach is when its so windy and wet that it feels like you're wading through a continual cold bath with an industrial fan in your face- because there's nobody else there! Hurrah!!

Everyone say "Private Beach'!!!

Rainy pier! 

But, oh..I do like to be beside the seaside....

Getting my 'Hygge' on back in the sanctuary of the St George's. Mmmmmm snuggly.

I fancy some of my Daddy's cuppa!

So we risked death-by-evil-seagull and had some chips for dinner followed by another stroll (roll?) and came home, which I think turned out to be the right decision. Thursday consisted of battening down the hatches and having lots of warm cuddles and clever playing with switch-toys...Go Elin!!!!!

Then what better way to round of half-term than a spot of shopping? Elin has been SUPERB in her chair and her dystonia has largely been kept at bay all week.  So she paid a traditional visit to the Disney Store and as usual absolutely lit-up with the fab music they play in there (I worked in the Disney Store in Edinburgh one Summer whilst I was at Uni and that music wasn't so fab then. The opening bars of 'Colours of the Wind' from Pocahontas still haunt my nightmares) . She also loves the bright colours all around and seemed particularly taken with the Beauty and Beast merchandise (the beautiful yellow dresses and the fluffy Beast toy, not the Emma Watson Belle dolly which is horrific- honestly, google it). This is especially poignant for me because it's one of my favourites and she has always loved the soundtrack. I saw the original when I was 11 and was captivated. The new live-action version is coming out in March and I think Elin's going to love it. I can't wait to take her. I might have to buy her the official jumper I saw in store today advertising the film. It said 'True beauty comes from within' across it. 

I'll second that.

Have a great weekend guys.

xxxxxx

Adopting a new attitude...

Now and then something stops you in your tracks as you trawl through the quagmire of internet news, mindlessly scrolling to while away the minutes before you (hopefully) peel your bum from the sofa and go and do something meaningful.
Last week, this story stopped me in my tracks. A young woman named Rebecca, whilst working as a missionary in Ghana, discovered severely disabled twins. Their mother had just passed away. I won't regurgitate the story, you can read it for yourselves here  in Rebecca's own words. Needless to say it's pretty incredible. To be Mummy to a disabled child is easily the hardest thing I've ever done and am ever likely to do. This blog charts that journey and regular readers will know it's had more ups and downs than Taylor Swift's love life. There were times, especially in the early days, when I didn't know if I could carry on. If I was equipped, emotionally and physically. I loved my daughter more than life itself but I didn't know if I had the strength to live that life and to be her Mummy. Sometimes, in the darkest of dark moments, when I was ready to throw in the towel (and/or throw a tantrum/throw a dish at the wall/ throw up/ throw myself under a duvet and never come out)  my sense of responsibility to man-up (woman-up?) because I WAS her mummy and I HAD to, was the only thing that kept me going. Which brings me to this extraordinary young woman. She had no such responsibility. She meets children in need of fostering and adoption almost every single day. To choose, then, to begin the arduous task of attempting to adopt disabled twin babies in a foreign country without the nearby support of her family and friends (back in America) absolutely blows my mind. What's more, I'm sure she probably isn't the only one embarking on this journey. I can barely comprehend the selflessness of what Rebecca has chosen to do and why. As a missionary she cites God as leading her way and is devoted to him and what she describes as her 'path'.  I find this part the most difficult to understand,because it is so far from what I believe but I am in complete awe of the strength of her faith. Her actions are simply incredibly noble and completely amazing.
It makes me feel like a bit of a lemon to be honest. It took me so long to be able to untangle my thoughts about what had happened to Elin, to start seeing the positives, to stop feeling sorry for all of us. Has my first-world narcissism created problems that should never have been there for me following Elin's birth? If Rebecca can actively choose to be a mummy to a child like her beautiful Ellie-Grace then what the hell have I been going on about for eight years? This serves me up a giant dollop of fresh mum-guilt (mum-guilt is something I EXCEL at. Seriously, I could get a Phd in it and I'm willing to bet I'm in the majority on this one- why do we punish ourselves so continuously?). But then it dawns on me that it doesn't matter how you got to be a Mummy to a child with disabilities in the first place, whether you actively chose it or did not. The fact is, you're doing it. By playing the cards you got dealt in the only way you know how. Your own way. Making mistakes, struggling, making it up as you go along. But still being that Mummy. Being there. At the end of the day that's all we can do, isn't it? Be there and do our best, in our own way...and stop negatively comparing ourselves to someone because they seem stronger than us, or braver, or smarter, or better, or we don't think we're good enough.

Because to the person who matters most, we almost certainly are.

Have lovely half term folks and please check out Rebecca's inspirational story if you can  xx

A blog by any other name...

The eagle eyed among you will notice my little blog has had a bit of a face lift recently! Changing the template of my blog to something more aesthetically pleasing has been something I've wanted to do for the longest time, I just never got around to it. Also (and more truthfully) I had no clue how to!! It's not that I'm a technophobe by any means but if anything I want to do on the laptop takes longer than roughly 10 minutes then said laptop is in serious danger of being flung through a window. It's not so much the skills I'm lacking, as the patience.
So I'm really glad that I've finally managed to do it with the advice from a good friend whose own lovely blog is pretty much like a work of art (there are SO MANY amazing blogs out there but more on that another day) and I am now working on a template I am pleased with.
Following the new look of the blog I figured after 8 years it could do with a bit of a new identity, too. It's evolved quite a bit since those first posts and I think it deserves a full makeover. I've always known what I wanted to call my blog if I ever changed it, so coming up with the new name was easy because 'Making Lemonade' is basically what we do every day. Turn a bad situation good, turn your frown upside down, count your blessings, stay positive. When life gives you lemons, make lemonade (unless it's a really crappy day, in which case shout, rage, scream and cry to your hearts content until you are able to simply taste the tang and turn it sweet again) I have to concede that 'Making Lemonade' may not be the most original of choices, which is why, predictably, the blog name and URL has been taken, hence the addition of 'Mum' to the title. But I like it. It's what I am :-)
I'm also going to be changing the blog URL (address) soon to something that fits with the the new theme a little better than the ever-clunky sounding 'cerebralpalsyjourney'. Sadly, I haven't yet unearthed a way to do this that will re-direct all you lovely blog readers to the new URL once it's done. So you may discover one day that I've disappeared faster than Beckham's credibility. I'll still be here, but I will be under:
www.mummakinglemonade.blogspot.co.uk.
 I would hate to lose contact with you all! Thanks for the continued and lovely support :-)
xxxx

Tearing down the wall...

It would appear with recent events that the world is about to get a whole lot more divided and segregated and that for the leader of the free world, hate really does trump love (pun entirely intended). The wall is going up, the borders are shutting down. Globally it's been a pretty thoroughly depressing January and I have no idea where it will end. Ignorance coupled with arrogance is such a deadly combination. But I won't start- I know nobody comes to this blog for political opinion! Luckily I experienced a little rainbow on another grisly day (both weather and news-wise) when I visited Elin's school today.  You see even Elin knows the best thing about barriers is when they come down :-) :-) If you'll pardon the extended metaphor, Elin has been knocking down a little wall lately and by doing so casually smashing her school targets -not to mention our expectations-yet again.
This video is so amazing I had to share it immediately. The game she is playing with her support worker is knocking down a tower of brightly coloured bricks (which have bells inside so she can also hear them) I know it might not seem like a lot. But it is pretty huge. The concentration Elin displays, along with the listening and looking skills are so clever! Then there is the fact that she is able to tie this all together and use her motor control skills to achieve her goal. She doesn't even stop there, she perseveres until she has demolished the very last brick and her expression clearly betrays her joy and that she is completely aware of her achievement. How I wish I could show video's like this to the Neurologist who told us when she was four months old that she'd 'never be a thinking person'.
I challenge you to watch this without smiling... :-)

Pretty good, no? Credit to her awesome Teachers and her Support Worker for their excellent planning, patience and tireless encouragement in extending Elin's abilities each and every day, which allow her to achieve in this way. As if that wasn't enough, after all that hard work today Elin continued to work on her targets by 'showing an interest in her own reflection'. Her focus is stimulated in the wonderful dark-room resource they have at her school, by using UV lights, brightly coloured wigs for her and in this case, flashing bunny ears. All of which make it easier for her to find her own reflection, which she clearly does on more than one occasion. No video this time but some pretty gorgeous photographs..

Here's looking at you, kid......

Forget Me Not

Yesterday was six years since Elin lost one of her little friends and we lost any remaining belief we had at the time in life being fair.
Harvey was 12 months older than Elin. He was the first other child I met who had severe Cerebral Palsy following Elin's birth. The hospital's 'Home Advisory Service' put me us in touch with his family when Elin was tiny. They thought it would help.
At first, it didn't.
I was frightened. I was scared of what I saw when I first met Harvey. He was unlike any one year old I had ever seen, his limbs were awkward, he struggled to feed, he was silent. I had a glimpse of our future and I wasn't ready to accept that version of what was to come. It was very early on and maybe I wasn't ready. I can't believe it now, of course, but I cried when I got home. I'm ashamed of this fact, but it's true. I was terrified.
But his Mummy came to visit again. She talked so much sense and understood what I was going through in a way nobody else I'd met ever had. She put Harvey on my knee. Didn't ask, just put him there. I liked this. It hadn't occurred to her that I might not want to hold him , why would it? She was Harvey's champion, pure and simple. I noticed she talked to Harvey all the time. I noticed he was listening. I cuddled him tight.  He smiled at me.
Wow. Anyone who knew Harvey will never forget his mega-watt smile. It dazzled me. He laughed, I laughed too. Paul met him for the first time and  thought he was amazing. He couldn't understand what I had been scared of when I'd first met him. I couldn't really remember now either. I started to realise that there was so much more to this gorgeous little boy than I ever could have imagined the first time I saw him. How stupid was I, when I had a baby Elin in a car seat at my feet, to judge any child by a fleeting first impression. I would hate for anyone to do that Elin, yet there I had been. I guess emotions sometimes overrule the head. I was thoroughly ashamed and will always be, of how I felt that first day we met.
Harvey became the light in our darkness. He helped us to heal when we thought we were broken forever.
That smile helped us to make sense of our strange new world.
Then on the 23rd January 2011,  Elin was spending the afternoon at school - only her second week there. She was doing afternoon sessions to get used to it and would then swap to morning sessions whilst I was at work. (She would be picked up by the bus Harvey would be on, I was so glad she'd have a transport buddy. I made a book about her for her Teachers and in it I put a picture of her and Harvey and wrote "Harvey is my boyfriend") The phone rang. My heart plummeted in case it was school, what if something was wrong with Elin? It wasn't. It was far, far worse.
I still can't believe Harvey isn't with us. We keep his photograph in Elin's room and look at it every single day. Elin has lost other little friends since that day. It never gets any easier (and I'm glad it doesn't). But Harvey has to remain special to us, for being the reason I wasn't frightened anymore. For being the crack of light in the shadows we lived in during those early days.
On that day, when Elin lost her best friend, the Universe gained the brightest of stars.
Bless you Harvey, for all you were, are, and always will be to us, without ever even knowing it.

xxxxxxx

Post envy

I stumbled across another Mummy's blog today. One of her posts has been fairly widely shared on social media and it's not difficult to see why. I just had to share it on my blog. I desperately wish I had written it and even for a moment considered stealing the premise and re-hashing it in my own words. However, I could never have written such an eloquent and articulate post on this emotionally complex subject and I think you should read the original in it's full simple, honest, concise glory. Not only is it a very moving and engaging article but it's astonishingly accurate. At least in my view.
If I had a pound for each time I have thought this..
"Please don't praise me for loving my child with a disability"
Enjoy..

http://www.ellenstumbo.com/dont-praise-me-for-loving-my-child-disability/


xxxxxxxxx

Don't look back in anger...

I love old photographs. I realise this is hardly revolutionary, most people love old photographs. Nothing can quite give you the warm, fuzzy feeling that an old photograph can. It can remind you of a great time you once had, or of someone you loved that is no longer here. It can present you with moments you don't remember as a child, or moments you do. Places you lived in, people you knew. It's hardly surprising that when faced with a question of what objects they would run to save if their house was on fire, most people say photo albums. Photographs record the big moments forever..birthdays, christmas, holidays. We want to treasure them and keep them to took at when we are old. They also record the small moments. The forgotten and seemingly mundane. But not always the insignificant....
Yesterday I saw an old photograph that did not give me a warm fuzzy feeling, it made me sad. I should point out I do not remember being sad when it was taken, aside from the general sadness that coated absolutely everything at that time of our lives in a permanent thin film of disbelief and horror. I was enjoying time with friends and family, I remember it clearly. I know Elin had not slept again the night before, but that she was beginning to improve following her giant operation at Alder Hey. So when the photograph was taken things were, by enlarge, probably looking up for us at the time. I think I was  feeling more hopeful and positive than I had been in a while.

But when I look at the photograph I still see sadness and desperation in my eyes. It surprises me that I look really young. I suppose I was young, I was 25 when I had her. I didn't feel young at the time. I'm

pretty skinny (by my standards at least) from what must be the effects of constant worry (every cloud!!!) Worse, I see Elin. She looks sad too. She was- she cried a lot that day, I remember. She cried a lot every day at that age. She looks so stiff from the yet undiagnosed dystonia and the uncontrolled seizures we were still grappling with. I was so proud of her and I look back and she just looks so poorly and upset. I have to face up to the fact that she was. The first six months of her life were pretty miserable. For all of us. Many of my friends have had babies since I had Elin. I watch the purely magical world they arrive in following the birth and that magic is as foreign to me as it is to a childless person. We lived in permanent shock. It was like living in a horror story, where you just have to get up each day and keep living life as if everything is ok. The photo unwittingly takes me back to that time. I cry when I see it, for everything we went through and everything we lost and were grieving for. Mostly I cry for Elin. Where was our magic??

But then, looking back is ultimately empowering. How can you ever know how far you have come, if you never look back? Boy, have we come a long way with our amazing girl. This time is alien to us now. Sometimes I cry for what is past, sometimes  I cry for the future, but never for our present. The baby in the picture, stiff, unhappy, confused by the world, regularly in pain and simply unable to smile (it was ten months agonising months before she did) is in that foreign land of times gone by. How different she is now.  So I will always steal myself and be brave and stare these photo's in the face. They can't hurt me. She is the happiest girl in the world. She smiles and laughs constantly and brings so much joy to the lives of everyone who knows her.
It's a miracle and so is she.

It turns out our magical moments just arrived a little late :-) 

never stop believing, folks. Happy weekend xxxx