Living with Cerebral Palsy 🍋🍋

Monday, 31 March 2014

Dotty pics ;-)

Just some photo's to cheer someone up who is very special to Elin and is a bit poorly! If you are reading this we hope you get well soon!
Elin's good mood continues and she had a great day at school, very happy coming home on bus and then a quick trip to the park with big sis. A good start to the week!

I love the view of this little bobble bouncing along. It's too cute for words.

The front view is even cuter :-)


Sunday, 30 March 2014

Mother's Day

Elin gave me the best Mother's Day present ever this year! She sat in her chair ALL THE WAY THROUGH our meal out today!! For the first time ever, I had a meal in a restaurant without having to eat with Elin on my knee. It was brilliant. Not only did she sit beautifully, but she was engaged, smiling and hugely responsive. This is such a simple pleasure for most family's but one which I can never take for granted. It literally made our day. Well, that and the elderly gentleman from the next table who stopped us as we left to talk to Elin and tell us how beautiful she was, how well behaved she had been and that he thought we should be very proud of her.  We are, we told him. Like you wouldn't believe :-)


Friday, 28 March 2014

Throw back Friday...

Ooops! It seems I have gone a whole week without updating- I don't know where the time goes?! For those Elin fans who are wondering, Elin has not had a bad week but has suffered with increased dystonia somewhat (not very successful sitting or standing in frame this week) and also a gurgly tummy :-( This has manifested itself in some pretty nasty nappies (sorry) and we are now the proud owners of a stool sample bottle courtesy of a quick visit to the doc this evening. If there is a better thing to do on a weekend than fill a stool sample bottle, I don't know what it is!! (NOT!) However the good news is that Elin has provided us with some mega-watt smiles today and so hopefully whatever bug may be lurking in her innards is on it's way out.
So, that aside, it's throw-back Friday today. There's only one choice really, since this weekend is our Wedding Anniversary. Not technically an 'Elin' photo, but kind of where Elin's story began. Everyone knows the old public display of affection is totally vomit-inducing, so I won't go on about love and relationships, for fear you might throw up your dinner. However, blog fans will know that Elin has a great deal of love in her life and is surrounded by it. Part of this is down to us, her Mum and Dad, and the promises we made to one another on a cold March day in Edinburgh nine years ago. With a small amount of close family present, a biting Scottish wind and an age gap wider than the grand canyon, we got married. I think some people may have doubted it would last (re: age gap wider than the grand canyon) but there were definitely two people who never doubted it would. We couldn't have known on that day nine years ago what heartache lay ahead, but if we wouldn't have changed a thing. We both feel equally and completely blessed by Elin's presence in our lives. Here's to the next nine years, can't wait to see what they bring :-) xxx

Friday, 21 March 2014

Throw Back Friday....

My last post got me thinking about Elin's Christening and what a lovely day it was. So I thought this week's throw-back should be a photo from that wonderful, special day. It wasn't just a simple celebration to honour the birth of our beautiful girl, it felt a little bit more to me, since I made that stubborn declaration in SCBU all those months before. It felt kind of triumphant, like we had won some invisible battle with nature. I knew on that day, though she was still relatively poorly at the time, that she was strong and more special than we dared imagine and that she would keep fighting, keep proving the doctors and their statistics wrong. So many friends and family travelled from all over the country to join us on our special day, the love and support for her was tangible and the sun shone brilliantly in the Spring-blue sky. I like to think it was shining on us, but particularly and most significantly, shining for Elin.
Post-pregnancy me (arms like a Russian shot-putter!!) and Elin wearing my Nanna's handmade 74 year- old Christening gown. It was absolutely beautiful and worn by all the children in the family for a while, except me and my twin sister with there being two of us and nobody wanting to cut it in half :-) I love that she could be part of this piece of family history and can't wait to find out who will be the next baby to wear it!

Thursday, 20 March 2014

A blast from the past

Yesterday I went to a meeting held by the First Minister Advisory Panel on siting of the proposed regional Neonatal Intensive Care Centre in North Wales. I was attending in my capacity as Chairperson of the Wrexham Charity "Cherish", which I have previously blogged about and which raises funds for the Special Care Baby Unit. However my interest of course is not limited to my position as Cherish Chairperson but is also as a Mum who needed these services and similarly a campaigner who has been fighting to keep essential neonatal services accessible to all area's of North Wales. It was a looong meeting and one of many I have attended. Maybe that story is for a different blogpost. What I wanted to blog about today is that I saw someone at the meeting I have not seen since those first hours and days after Elin was born, and whose voice instantly transported me back to the Special Care Unit, with it's clinical smells and mechanical sounds. It was the hospital chaplain. I have not thought about her for years. But just in that instant, a hundred memories came flooding back, not least the one where the ward sister asked us if we would like Elin christened by the chaplain on the Unit. I liked the chaplain a lot. But I refused. I could not contemplate it. Elin would be having a christening, I said, but she would be wearing our family christening gown and with all our family and friends present and a big party afterwards as I imagined it because SHE IS GETTING OUT OF HERE (the following May, that's exactly what happened). Anyway, the chaplain visited the Unit regularly whilst we were there, sitting by Elin's bedside day in day out and hoping for a miracle. Despite my practical atheism (if I believed in God before, I certainly didn't at that moment in time) I found the presence of the chaplain calming and comforting. She was kind, and supportive. When I saw her at the meeting I went to thank her for the support she had given us all those years before. Of course having seen hundreds of parents she didn't remember us and now works in a different hospital, but she was happy to have been helpful to us during the worst time in our lives and I was happy to have seen her again. As she asked in her calm, considered manner how Elin was and I gave her a brief snapshot, she demonstrated to me that even the wisest and kindest people can sometimes get it wrong. Not that I want there to be a 'wrong' when you talk to me about Elin as such, but there are things that can grate a little. I feel bad even typing this, as obviously the intentions she had were nothing but good, but this blog always had to be honest or there's no point in writing it. You see, she seemed to have missed what I said about the nature of Elin's condition. She started to tell me about her friend's daughter. Yep, you guessed it, her friend's daughter is now 50 and went to University and can walk and talk and they told her Mum when she was little that she wouldn't be able to..and now she does X, Y and Z etc etc. This is so far removed from where we are with Elin and will ever be..and that's ok! We've come to terms with it. The fact that Elin has achieved greatly in her little life and these achievements are what we must celebrate, not how comparatively 'normal' her life 'could' be. I have written in-depth about this before so I won't go over all ground again. But I was so disappointed. I thought she would have understood, I thought she may even have some wise words for me. If a chaplain can't prompt an emotional epiphany who can, right? But it turns out even those wearing collars around their necks and warm smiles on their faces can completely inadvertently make your heart sink in your chest just a little bit. Human, then, like everybody else. What, exactly, was I expecting I wonder??  However I have to still point out despite this, if there is anybody reading this who may feel they have a direct line to the man upstairs, we wouldn't say no to that miracle, you know, if there was one on offer. Put in a good word for us, would you?

Wednesday, 19 March 2014

Happy Birthday best Daddy xx

Yesterday Elin and Caitlin celebrated Paul's birthday with us. I still remember the first birthday Paul had after Elin was born, and how different everything was to now, yet just exactly the same. How everything changes, yet nothing changes. Strange, how life can be like that. I don't know, as we ate an identical chocolate cake to the one we ate today, made with everlasting repetitive precision by my amazing Mum, and blew out candles five years ago, if I was considering the future or what I thought things might be like in the next five years. What I do know, though, is that Elin is in a much better place than she was at eight months old. Fitter, healthier, happier, more settled. For that we are all truly thankful. Paul says it's the best birthday present he can have, Elin's good health, and I'll second that. We are never more grateful than on special occasions that we have her with us to take part in the celebrations, and will never be blasé about this, as we have been too close to those who don't share the same luck to know just how fortunate we are. Every day with you Elin is truly a blessing...and your company is the best present any parent could have on their special day. But then every day is special to us, because you are in it. Love you to the moon and back, little pickle head x


Saturday, 15 March 2014

The long walk to freedom...

What a day! Elin has had a great week again this week and even got a sticker in Assembly on Friday for being so good! I hoped the mood would continue into the weekend and I wasn't disappointed. We spent the longest time we have ever spent in town without getting her out of her chair and even then it was just because we had a coffee-stop :-) You Elin fans may very well be getting tired of me going on and on about her seating issues but the fact is it's just the hugest part of our lives and it can affect everything we do (or want to do). When she sits so well it just makes everything feel like such a treat even a trip to town leaves us with huge smiles on our faces. We could have walked around town all day we were just so happy to be there with her- and so proud! One cashier in a clothing store asked me several questions about Elin including how old she was. I always wonder if people will be surprised when I say she is six in July but the lady showed no surprise and I instantly knew from the way she spoke to Elin that she understood the situation. Before I could qualify any responses I made with 'she has Cerebral Palsy', which I sometimes feel inexplicably obliged to do, though I know I shouldn't, she asked me if Elin went to the school which she does go to. She explained her Mother In Law used to work there until she retired a year ago and was so complimentary about the school and the children that it made sense she would feel confident enough to speak to me directly about Elin (you would be surprised how many people are a little frightened I think, of speaking to me about her, as I have blogged about previously I always appreciate it when people do). I wish everyone was so understanding! We eventually left town and came home to the Six Nations Rugby. Elin and I made a very sharp exit to my friend's house, as I have learned the hard way that being around Daddy Drake when Wales are playing is a bad idea -though Elin thinks all the frustrated shouting is hilarious, I don't find it so funny!!! (It's just a game arghhh don't get me started!). Anyway off we went to see my buddy Vicky and her daughter Megan, who is 7. As Elin was having such a good day and the sun was out we went for the longest walk EVER (With Elin in tow, that is). Megan had her electric scooter (it was quite hard to keep up!) and I think we must have covered a couple of miles. It just felt so free having a lovely walk with the sun on our faces and Vicky was as made-up as me to be out and about with Elin (all my friends have watched us go through the seating 'situation' from the beginning and been kind enough to understand and accommodate it). Moreover, I surely burned enough calories to work off the Indian we had on Friday night? Now THAT'S a good day.

P.S Elin slept aaaalllll night last night. ALL NIGHT strait through. This almost never happens. When things are good, they're very, very good (and when they are bad they are horrid)  :-) :-)


Tuesday, 11 March 2014

Monday, 10 March 2014

Our tooth fairy

Our tooth fairy is not a tiny winged creature in a tutu that lives under the tree at the bottom of the garden, but is a dentist in our local dentist practice who has been seeing Elin for years. She is so lovely and always puts me at my ease, always gives Elin a sticker, never patronises, listens to my concerns and always explains everything properly. She also handles Elin so gently which is really sweet.Yes, I know that's her job but you'd be surprised at some of the so called 'professionals' over the years I have dealt with. So I always appreciate kindness and a bit of understanding. Last Friday we visited again and Elin didn't need anything doing.  Even though she was having a really off week last week she still had a few smiles for the tooth fairy. She loves going to the Dentist! Especially the instruments and in particular the little sucky thing that goes in her mouth.  Crazy girl. Her front tooth is a little wobbly, so I guess we have to watch for that falling out now- she will look so funny with a Nanny McPhee snaggle tooth! Also she will look quite grown up, she's getting big now loosing her teeth and turning six in the Summer! Im not sure i like it!? But deep down i know I am lucky in at least one way because Elin will always truly be my baby, no matter how many teeth she looses or how many birthday's pass us by. I have to admit despite everything (and believe me I would give anything to change it for her if I could)as a Mummy there is some comfort in that albeit in a very bittersweet way. Love you, baby Elin xx

Friday, 7 March 2014

Throw-back Friday

Today was 'World Book Day' , so Elin's school were invited to dress up as favourite book characters. I love that school includes Elin and all her friends in the mainstream activities. It doesn't just help the children to be part of the school as a whole but personally speaking it helps as a Mummy to feel included too. As friends and work colleagues show you pictures on their phones of their children dressed up, I can reciprocate with pictures of Elin. It's a simple thing, but it's just nice. So much is different when you have a child like Elin, it's lovely when things are the same :-) Last year Elin went dressed as the Hungry Caterpillar. This year we chose The Tiger Who Came to Tea. She looked absolutely gorgeous and holding her felt like snuggling a giant teddy bear. I have always liked dressing her up, she has had so many dressing up costumes over the years I can't even remember all of them. But one that sticks in my mind is the Dalmatian Puppy costume. 101 Dalmatians was one of my favourite stories when I was little, I had all the gear related to the Disney film then read the 'proper' book by Dodie Smith when I was a bit older. So I was delighted when my Aunty bought her a Dalmatian costume. I think you'll agree, it looks pretty cute. Oh if only photo's could come alive, just for a second! I would love to kiss those tiny chubby cheeks again. Happy Friday folks!

Me and my little Tiger Who Came To Tea



Not the best week for Elin after such an amazing week last week. We aren't sure what's wrong, only that she seems a bit fed up, lethargic and not quite herself.  It's a shame when she was doing so well, especially with her buggy. She was much less tolerant of sitting in anything this week, for any time at all really. But we know the score by now, one step forward, one back! I had such high hopes last week that things were looking up in regards to the seating issues Elin has, but I think deep down I knew it wouldn't be as easy as all that. I know we can achieve that again, it's just hard with it being so unpredictable. One of the things I enjoyed most about last week was being able to plan things and know that Elin was going to get some enjoyment out of them too, despite the need to be sitting in her chair. Nipping to the supermarket or shop was possible without huge stress on Elin and without having to watch her little body twist and bend and fight against itself.  Such a simple thing as Elin sitting well in her buggy can normalise everything for us in terms of family life and it felt really good. Elin's new buggy is definitely helping, though it still needs lots of adjustments before it will suit her needs completely. For example it needs new harnesses and foot straps, the current one's are not keeping her legs in a good position. Such a massively difficult balancing act between comfort and appropriate positioning, I hope with the help of the amazing technician at Alac (wheelchair services) that we get it right soon. In the meantime I think I have to stop looking for answers as to triggers for her dystonia, reasons why she suddenly decides she will or won't sit.  It's against every fibre of my being not to discover solutions to problems and not to know why things have happened- I'm someone who likes order and reason and explanations. But something I've learned since having Elin of course is that there isn't always an answer. I could procrastinate forever about it but the fact is, sometimes there just isn't an answer. So, maybe it's time I just stopped thinking about the question before I drive myself insane. To quote the title of our favourite book about a little girl like Elin, which I have blogged about in the past, the only answer we may ever get for Elin's changing behaviour/dystonic patterns is "Just Because". It's just something I've got to learn to accept, embrace and sometimes, ignore. If my brave girl can deal with it day in, day out then I'm pretty sure I can too.

Saturday, 1 March 2014

Carlsberg don't make half term's....

What an absolutely amazing half term Elin has had. We haven't seen her so consistently happy for a whole week, for a long, long time. So we are extremely happy too and feeling very blessed.  As today was the penultimate day of the school holiday we thought we would finish it off with a treat, so as I mentioned in yesterday's post, we went to the Blue Planet Aquarium. It can be a tad pricey for what it is but for us it was a total bargain. Elin got in for free and so did I as her carer (thanks Blue Planet!) which meant only Paul had to pay so it was £14 for the three of us!! You can't really say fairer than that for a few hours family entertainment. It took Elin a few minutes to acclimatise (it's very dark and pretty noisy) but once she did she loved it. She sat in her buggy all the way around with hardly a peep. You could tell she was actually enjoying the movement of the fish past her face during the times we could get close enough to the glass. She also, we noticed, zoned in again on the surrounding kids' voices. She especially like babies crying!! (It makes her laugh, a little sadistic, Elin!!) and it was so lovely to see her really noticing her environment and picking out certain sounds. i can't describe what it was like to get out and do something special as a family without Elin stressing. I have blogged about it many times. We know it's a long road and one step forward, ten back (last week for example was a different matter all together) but a few weeks a year like this one will do us.  It's been an absolute treat and a week that will stay with us for a very long time to come.

Hello lads, anyone seen Nemo???

Hmm I do like these pretty fish.

Frogs! Daddy is making me laugh by saying 'Ribbitt' like a Frog and mummy is scared of them so she is hiding her eyes.

The deep sea divers tank. Lovely.

We found him!!!!!

Erm...not too keen on being in a tunnel under the sea actually Daddy. Did you see that shark????

HELP!! Jaws!!!

Goodbye Blue Planet thanks for a lovely time

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