Living with Cerebral Palsy 🍋🍋

Thursday, 8 December 2011

Hi ho, hi ho....

Oh dear! The approach of another holiday, another illness for Elin! Had almost a week off school, on antibiotics and feeling very sorry for herself! I feel sorry for her too, she really doesn't need extra complications on top of everything she is dealing with! I hate her missing school. When Elin goes to school I feel like she is engaging in a perfectly rounded day- fun, stimulation, activity and things I cannot necessarily provide at home. I feel like sending her to school is like sending her on a mini-adventure, every single day. A million times better than sitting at home, no matter how hard I try with the equipment we have here. I feel like she is getting the very best quality of life we can give her, hence me hating it when she can't go. School brings normality. Which brings me to my next point. I also hate missing school (I am a part time teacher). I love spending time with Elin it's my favourite thing to do in the world. But I also love not spending time with Elin. I love the break, I love adult company and conversation. I love that I am something other than Elin's Mum, though first and foremost that is my most important job :-) With Elin's health being so poor recently going to work can be a stress. I have felt a little removed due to worry and concerned that I am not giving my best and letting people down. In my darker moments I have considered giving up. But I know that I can't and this week at home with Elin has confirmed this in my mind. However tough things get the key for me personally is to keep busy, keep going and still retain the identity I had before Elin came along. I worked so hard to get my job. I love my job, genuinely. I love my colleagues. What would happen to me if I gave all of that up? Might I start even resenting Elin, or at least the situation? Plus Elin will be full time next year, what would I do all day? There is no doubt in my mind that because I work I am a better person and moreover a better Mummy. My afternoons with Elin are precious, but so are my mornings away. They help me to put things in perspective and to feel like I am accomplishing something. But that doesn't always mean it's easy..the guilt is omnipresent and harsh, the guilt that Elin should be getting 100% of my time every day. Decisions like this are not helped for Mum's like me by the fact that carer's allowance does definitely NOT equal a living wage. So giving up work would leave us financially out of pocket quite seriously too- though this issue is about so much more than money. And for now I know my dcision is absolutely the right one, however bad that makes me feel. Luckily I have THE most supportive colleagues around and luckily the situation works pretty well- aside from these times when she is poorly of course. Work is my constant, my rockbed. I have been there since I qualified, since before I knew what life had in store for us and I hope to be there for many years to come. Work is me. And I love it. So next time someone asks if I work and raises their eyebrows and says REALLY? Wow I don't know how you do it, Im going to take it as the compliment it was undoubtedly meant to be instead of beating myself up for being a bad Mum AND a bad teacher. Because somewhere deep down I know I am neither ;-0

Wednesday, 23 November 2011

Keep the Faith..

A couple of weeks ago somebody I haven't known for long asked after Elin. She is a very religious person and attends Church regularly, unlike me on both counts. But I have to have total respect for her faith. Bad things have befallen her and she still has this unwavering faith. My feelings on this subject vary between scorn and envy. It is hard to believe in a God that is merciful and kind and good when you have to deal with things that test you to your very core. When you see evil people and awful parents and people who don't give a shit dragging up five perfectly healthy children and you wonder...why? Seriously why? I have never been deeply religious but when I got pregnant it seemed such a miracle to me that I prayed every single night of my pregnancy without fail. I felt stupid at first but then I got used to it and I started to think yeah, maybe someone is listening. Im pregnant after all despite the odds. Maybe there is a God. Maybe He is good, maybe He performs miracles. Then Elin was born and I felt like this God I had persuaded myself to believe in had thrown a massive egg on my face. Where was He? Where had he been, why wasn't Elin the healthy baby I prayed for? We nearly lost her, how could He let this happen? I know what a believer would say. A believer would say he DID save her that night, because she is still here. A believer would say God only chooses special parents for special children. A believer would say God works in mysterious ways. But I could no longer believe. I was bitter and angry and resentful and started to think 'I knew it. I knew it was a load of balls'. I am well aware that this is not the point of faith, that it's not about just praying for what you want and throwing a major strop when you don't get it, but I just could not and cannot bring myself to think about it anymore. Too painful. Anyway, this lady asked how Elin was and I told her and she said 'Ah but God is Great. God performs miracles' . Just like that. Right there out of nowhere talking about God as if it's an absolute fact, as if she just assumed I believed. I expected to feel angry, but I didn't. You would think I might have wanted to say 'Oh yeah? He doesn't seem that great to me' because frankly, He doesn't. But instead I was just sort of in awe of this blind faith and what an amazing comfort that must be when you are going through hard times. She genuinely believed what she was saying, she was being kind because faith is all she knows. It must be equally alien to her that I might not believe as her all consuming love of God is for me. To be honest it makes me jealous I almost wish I had that. I wish I had a reason why this had to happen to my daughter. I wish I could think it was part of His master plan for me and for the Universe. Would that make it easier? Probably. But whilst the bitterness outweighs the envy I can't see me stomaching prayers again, not yet. Maybe I will start by watching Song's Of Praise again and see where I go from there......

Thursday, 10 November 2011

Happy Talk...

Elin is the happiest we have seen her in a while. It is wonderful. There is simply no better feeling in the world. She is smiling and talking away to her hearts content. It is my favourite sound. I will never, never give up that one day she might say 'Mum'. But for now her happy cooing and gurgling is enough. Tonight when I put her to bed after a fantastic day, she did not cry as usual. I put her owl with the glowing tummy in her eye-line and turned on her musical mouse. She laughed. I came downstairs, she was still giggling. I waited for the cries that accompany bedtime without fail, but they never came. When I checked on her a few minutes later she was fast asleep with one of her fists tightly holding onto the top of the duvet and her mass of curls poking out of the top, like an Angel, or a Cherub.Elin had literally laughed herself to sleep tonight.This makes my heart burst because I don't feel sorry for Elin tonight, like I often do. Tonight I don't wish for more for her than what she's got. After all- let's face it, I think there's a lot worse you could be in this life than tucked up in your duvet looking beautiful having had a lovely day with teachers and friends and family who love you and having just laughed yourself to sleep. Sounds pretty amazing to me :-)

Wednesday, 2 November 2011

A miraculous recovery!

Well, given just how worried we were at he time of my last blog post I can hardly believe the turn-around in Elin. A visit to hospital, a different antibiotic, an early 'up' with her epilepsy medication and 24 hours after our visit to hospital she was a different girl! She smiled on Saturday for the first time since the previous Tuesday- the relief in our house was palpable. It was like she had never been ill! And there was me mentally preparing for overnight stays and possible trips to Alder Hey! Despite it being a very difficult week, it's like anything- I have to take the positive's from it. And the positive from this is that it just goes to show you never know how quickly Elin will rally, even when things are looking bad. The morale of the story is therefore in the face of adversity, Keep Calm and Carry On. :-)

Friday, 28 October 2011

Not so happy half term

Had been looking forward to half term after the term from hell with all of Elin's problems in the past few weeks. It was looking good, seizure free and full of smiles for two whole weeks at the end of term- great. However my sense of unease began on Monday of Half Term when she slept all day. Then coughed, and wheezed and coughed some more. Slept all morning tuesday, waking only to retch or cough. Got her into the G.P Tuesday afternoon, he confirmed a rattly chest and prescribed antibiotics- yessss! Surely they would sort her out I thought, they usually do. Wrong. Wednesday and Thursday passed in a blur of no sleep and one very poorly, lethargic, floppy sad little girl. Thursday night brought a seizure needing rescue med after a day of strange shaking activity which could not be classes as a seizure as it stopped when you picked her up. This began again on Friday which prompted a visit to the lovely blue angels on Children's Ward and our fave young doc. Slightly stumped by the weird shaking we agreed together - after conferring with two consultants- that she could not be having a seizure as it stopped each time I picked her up. Hmmm. Work than one out. Anyway, was given a new type of antibiotic to deal with the cough and retching and came home hopeful of an improvement. Sadly Elin decided otherwise and had another fit requiring rescue medicine just before bed. Which brings us to now and I fear we may be back on the Ward tomorrow. We have not seen her smile since Tuesday, just look distant and poorly and confused. Never seen her like this. Also added worry that this is not related to her illness and instead is something being caused by the recent change in her Epilepsy medication at which point it's hard to say what to do as she has to stay on the new medicine regime until December. I should be in Edinburgh right now for two nights enjoying a Uni reunion, but cancelled the tickets on wednesday as it became clear she just wasn't getting any better and despite protestations from Paul I just felt instinctively that this was a problem that wasn't going to resolve easily how right was I? So instead I am literally worried out of my head yet again and feeling useless and hopeless. When is Elin gonna get a break?? When are we???

Sunday, 16 October 2011

Tesco is tough..

I hate going to do my weekly shop, it fills me with dread. I know I could do online and blah blah but the fact is I need to physically see stuff as Im rubbish at making has only just hit me properly why I hate it sooo much. I mean, I hate it like everyone hates it, for the trolley with the wobbly wheel, for the old lady you get stuck behind, for the way they swop everything round when you only just felt comfortable with where everything was. But for me there is another reason, probably one I didn't want to admit's the kids. So, so many children with their Mummy's, sitting in the trolley seat or walking beside the trolley..and this is hard for lots of reasons. I can never take Elin to the supermarket. Too big for the baby seats and cannot sit up so toddler 'flap' seats are useless. Cannot push wheelchair and trolley at same time. Even if Paul came in order to do that latter, she would simply not tolerate sitting in one position in her chair for that long. So I have to go without her and I know most Mum's out there probably wish to god they could leave the kids at home for the weekly shop but I wonder how long it would be before that novelty would wear off? Before they missed the tug on their sleeve, the chatter, the begging for sweets, the help, even? So obviously I find it hard to see other kids with their Mummy's in such a mundane situation that they simply take for granted knowing it's yet another thing Elin and I cannot do together. But it's more than that even, it's simply seeing so many Parents with their children at the same time, hearing snippets of cute conversation, observing parent/child relationships. Obviously I see loads of children in my job a as Nursery teacher but the parents aren't with them. I see Parents with their children in other situations obviously, walks to the park, going to town etc but never so many all at once- literally round every corner and in every aisle. They all always seem to be Elin's age too as if highlighting the torment by also clobbering me with the chasm of difference in their abilities when compared with Elin's. I have been known to practically jog around the supermarket wishing I could wear blinkers like a horse to avoid being frightened by my surroundings! Actually I think I should re-consider the online would probably save me a fortune in kids clothes as a bonus if nothing else... :-)

Thursday, 29 September 2011

Helpless feelings are hopeless..

I think one of the worst feelings as a Mum is helplessness. It's been a bad start to the week with a fit on Monday that once again did not subside, requiring an ambulance and a fit on Tuesday which ended in A&E. And you're just so bloody helpless...there is literally nothing you can do but watch and wait and hope. Trouble is, nobody can help really, not even the best doctor you can contact, because it's a waiting game and a game of bravery and courage whilst her medicines are changing . Elin shows tremendous courage, she shows us everyday and this is where I get mine from, but it's tough to stay brave when you want to rip your heart out to stop it hurting and you would give anything for the bastard fits to leave Elin alone. But you can't reason with epilepsy, you are at it's mercy and so is she. You are helpless and as a Mum you feel hopeless and sometimes useless too. All you can do is keep going and keep smiling and keep being the best Mum you can be and not let it beat you, keep your courage. Reminds me of one of my favourite quotes:
" Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying I will try again tomorrow"

Tuesday, 27 September 2011

Facebook friends?

Why do some people get so snotty about Facebook? Yeah, look down on me cos I use it a lot- would love to see what the hell you would do if you had even a tiny inkling of what we have been, and are, going through since Elin was born. I realise that airing your dirty laundry in public is naff and that updating every five seconds is sad, but I do neither. Facebook is an amazing tool for me to immediately access several Mum's just like me. Within half an hour I can have as many as ten opinions on Elin's latest drug change, for example. Surely this can only be a good thing? If it wasn't for Facebook how would I ever have made contact with Mum's and kids like me and Elin? There certainly aren't any in my 'real-life' vicinity! Not feeling alone is incredibly important in helping us deal with Elin's condition. In fact, in the early days especially I think I would have lost the plot if I had not had access via Facebook to these amazing, helpful Mum's who have become more than the literal sense of the words 'Facebook friends'. Also, as recently proved, when something untoward happens in Elin's life, I can let all my friends know at once instead of sending out loads of texts saying the same thing. And I have such amazing friends, they always want to know, so that they can offer help and support and because they are genuinely interested in Elin's well-being. Which brings me to my main point. Facebook is not a means of getting attention, it's a means of getting support. There's a bloody big difference between the two.

Sunday, 18 September 2011

Life is like a box of chocolates....

I have blogged about this before, but it never ceases to amaze me how kind people can be to us and to Elin. It's not that Im not giving anyone credit, but everyone has their own lives and their own problems and such a lot has happened with Elin in 3 years that I would totally understand people generally became a bit numb to hearing about hospital visit's and Ambulance rides and everything else. Happily this is not the case for Elin and we have incredible family and friends. Calls, texts, facebook messages always come thick and fast in a crisis and I don't think even those sending them can truly know what this support means. It literally keeps us going. We would really struggle without it and I will never forget those who have shown such kindness, even if it's a wee text to say thinking of means the world to know that people still get that this is hard, its stressful and it never really goes away. From my work colleagues who take over when I have to dash from work and are unfailingly supportive, to my sister who always comes to the ward when we are in, to my parents who do such a lot for us, to my friends who bring gifts or phone to say they love me (but don't tell anyone, yeah?) to the Nurses on the ward who make a fuss of Elin and make us feel at home to the teachers from Elin's school who call into the hospital just to give her a snuggle on their way home from work and to faraway friends and family for which Facebook proves an incredible tool for them to say they are thinking of us and can they do anything, the support is literally overwhelming. Epitomised by a single, giant box of chocolates left on our doorstep yesterday after another rough week. There was no note and it struck me that it wasn't just nice that I had a box of chocolates from a lovely kind person, what was really incredible was there were about 5/6 people at least that they could have been from, we really have that many people in our life, who live nearby, who would think to make a gesture like that.Forest Gump said life is like a box of chocolates, you never know what your gonna get. Well in our case life is like a box of chocolates that get's left on you doorstep. You never know what your gonna get, but the amazing support you need to deal with it is right there at your back door. How lucky are we?

Wishin' and hopin' and prayin'......

So, we got to Thursday and so far so good. A fit-free weekend and then a sound three days in school. Whilst we waited for the School transport on Thursday morning at my place of work (where Elin is picked up from) she laughed and smiled and 'chatted'. I said to one of my colleagues 'If we can make it until tomorrow, we've had a fit-free week!' so what happened next is sort of my fault cos I had tempted that evil demon called fate. I pulled up outside Elin's school at lunchtime for a physio appt and there was an ambulance there. I knew it was for her. Stomach-wrenching moment , that. This time she was still fitting, this time she went to A&E as she was still fitting it's procedure and this time I was pretty bloody scared. No familiar children's ward and no idea why her rescue medication hadn't worked. Long story short, the fit stopped, we got taken to my beloved children's ward and Elin came round and appeared to find the whole episode quite amusing. I had made the decision that I wouldn't call Paul until he had finished work as he had biked to work and it was miles away and I was 100% sure as soon as I saw her cheeky face waking up that she was ok. We had examinations and a chest x ray and still no answers. Elin was still pretty amused. Daddy arrived after work and she really began to cheer up then! We were allowed to go home for the night but told to return in the morning (friday) which we duly did, taking the day off from work and taking Elin out of school. Presiciely nothing got sorted as the consultant in Alder Hey apparently does not always like to be consulted! He returned nobody's calls (despite us having called two weeks ago) and as the docs in Wrexham don't like to move on her medication without his go-ahead, we were sent home for the weekend. Waste of time and we wont fall into that trap again- certainly there was no need for two of us to be there. So that brings us to today, exactly the same as last Sunday- wishing for a better week, hoping for no more fits or Ambulance rides and praying the Alder Hey Consultant would answer his calls.

Friday, 9 September 2011

What a week!

Bad week at Chez Drake! Well, more accurately bad few weeks I suppose (see previous post). Elin went back to school this week, as did we. After the end of the Summer holidays I was hoping for a quiet, drama free week but Elin had other ideas! Yes, the fits it seems are back. Properly back- think a scrawled message on maybe a shower room wall in blood reading 'They're Back!!!!' That's how back they are. This is pretty heartbreaking, given the good run she had until this Summer. Is it too much to ask that she starts school properly (five mornings a week now! Big girl!) without any complications? She so does NOT deserve this. Wednesday brought the first ever fit at school and today brought her second ever fit at school and her first ever ride in an ambulance. Her fit at school this morning did not subside as it is supposed to after the rescue medication (naughty fit!) and so as per protocol school called an ambulance and I was called at work to meet the ambulance at hospital. Urghhhhhh. To be fair I remained a very reasonable level of calm and insisted on driving to hospital by myself. I knew she would be ok, I don't know how just deep down I knew she would. Didn't stop me feeling slightly panic striken when I got there and she hadn't arrived and I suddenly had 'Holby City' scenario's running through my head involving her being 'worked on' at the 'scene', the ambulance being involved in a car accident/ fire or balancing procariously off the edge of a cliff whilst the heroic paramedic decided whether to save Elin or his long standing colleague (Yeah, yeah I know there are no cliffs in Wrexham, I never said my imagination was logical) . Anyway the staff on the Children's Ward, most of whom I know pretty well given the level of frequency we have been there in the past three years, were, as ever brilliant as were the staff from Elin's school both over the phone and when they arrived with her (escorted by a lovely carer and the Headmistress only the best for Elin). So, we have established that I was pretty calm, that I instinctively knew she was ok and that I have visited the ward many a time and everyone was very reassuring. But nothing will ever prepare you for your helpless three year old being wheeled towards you strapped to a trolley in her school uniform, minus one hair bobble and a pair of tights, peering inquisitively over the top of an oxygen mask and I don't ever want to get to the stage where I am prepared for that sight. Luckily for me that was as bad as it got and we were back home (again!) in a couple of hours. But still not something I am going to forget, or want repeated, in a hurry. And there was a piece in the paper today about Victoria Beckham being stressed to 'breaking point'. Ha, **** you VB. Give me a bell sometime, I'll show you stress!

Thursday, 25 August 2011

It's all in the timing....

Well it's been a pretty bad week and a half!More big fits than you can shake a stick at and a case of Impetigo, stomach upset and two hospital overnights stays in four days (having not ad a hospital stay in 18 months!!)! Poor Elin. The stress nearly had me banging on the door of the Priory and begging to be admitted! Cos of course, nothing is simple. Mid way between the hospital admissions was my 30th birthday party, joint party I should say with my twin sis. Planned for ages. House full of my lovely friends from Uni staying. Boom! Saturday-party day-brought three fits. The third being at 5:30, an hour before I was due at party venue to meet my sis and start with the decorating. Now, here is where Elin and I are lucky because Elin has the best Daddy in the world. Cool as a cucumber he took her off to hospital, 24 hours since we had last been discharged, with instructions to me to 'carry on' and that she 'would be fine'. I got on the phone to orchestrate some changes given what had happened and whilst I was on the phone my Uni mates straightened my hair, did my make up and got me out the door on time. I have never felt less like a party in my life but given the fact my car was full of balloons, games, old photo's, posters, birthday cake and banners, I had no choice. Another stroke of luck, the party venue was over the road from the hospital, giving me the ability to set up, greet the guests then drive over to see my Princess. Felt a bit of a knob tottering down the children's ward corridor in my party dress and heels mind you! Elin looked small.She was in a bed not a cot and she looked so small. But Super-Dad was by her side and one of our fave nurses was assigned to her. I knew she would be ok , we have been here plenty of times before, but that didn't stop tears- it's my party and I'll cry if I want to! As I eventually drove back to the party without my husband and my daughter, it struck me that things were a bit shit. Actually, with a room full of people, some of whom had travelled across the country, waiting to see me and who had, of course, been hoping to see Elin (who is always the true star of the show) when she was stuck looking so vulnerable and poorly in a hospital bed , it struck me that things were A LOT shit. But then, I have dealt with plenty of shit and I did what you do. Wiped the mascara from under my eyes, took a deep breath, slapped a smile on and went back to the Party. Cos what else can you do in life? Take the shit, dust yourself down and always, always return to the party with a smile on your face.

Thursday, 21 July 2011

More sweet, less bitter...

My post from Elin's birthday last year talks of bittersweet feelings around the time of her birthday, for obvious reasons. Isn't it funny how old cliche's sometimes come true though? Like 'time heals all wounds' . Whenever anyone told me everything would get better with time after Elin was born I wanted to punch them in the face!! I could not see how I would ever feel better about what happened to her. Then lo and behold her third birthday is approaching (tomorrow!) and suddenly I realise I have not felt sad about it this time, not really. It DOES become easier to bury some memories and feelings and I refer back to an article I posted on here a while back by Rebecca Elliot, mother to a severly disabled little girl. What she said resonated so much with us. Elin does not and will never 'achieve' an awful lot in life in the conventional sense of the word.(Think GCSE's, Sports Day's, Graduations, etc etc) but the biggest achievement in Elin's life really is that she is still here! Despite the odd's, despite a hell of a battle, despite a list as long as your arm of medical conditions, she is here and happy and robust and loved. This, of course deserves huge celebration, which is where her birthday comes in. Because it is a reminder of her immense achievement in the face of adversity. Her biggest and most wonderful achievement in life is life itself. We will never forget that. Each birthday brings gratitude beyond words for us that we still have her and love her and can tell her every day. Happy 3rd Birthday Elin, Mummy's miracle. Turns out time does heal, a little anyway. I can't wait to see what next year brings xxxxx

Friday, 1 July 2011


Wow I had never realised until this week how easy it is to bury some feelings that hurt. I have previously blogged about how pleased I am with Elin's school, it's a wonderful place. So pleased that I never considered the alternative. Not the alternative to Elin as she is, because the school where she is is simply perfect. I mean the alternative for the girl she should have been. I recently discovered two friends' children had their 'open morning' for Nursery at the local school. This is when children go for a 'taster' session so that when they go to Nursery in September it isn't so scary. The three of us were pregnant at the same time and of course this is the school which ordinarily Elin should have been attending. It's a short walk from our house. It's the school my sister and I went to when we were growing up. Worse still it's the school where my Mum works (and has always worked since we were toddlers). I always just assumed my kids would go there. What could be more perfect? Elin should have been there with my friends little ones. She should have been starting in September, in the uniform I wore as a kid. She should have been in my Mum's class, finding it funny that Nanny is in her school, being taught by teachers that taught me, saying funny things that are re-told to me at home time. The familiarity and sense of history not to mention the convenience was something I was really looking forward to when I was pregnant. Of course I try incredibly hard not to get caught up on the 'should have's' of our situation but the fact that she should have been starting in September is too poignant for words. Ironically of course I am a Nursery-age teacher myself, which makes everything harder. I somehow found it easier when she was younger than the kids in my class, as if that explained the huge chasm is their differing abilities. But she's not younger anymore, as of September she is the same age. As I teach and chat and play and joke and sing and dance with the children in my class, it will be hard not to draw comparisons with all the things I so desperately want to do with Elin and the things she should have been doing with her own teachers and friends in her own school. When I think about this I will simply have to remember that she knows nothing of this parallel life and school to her is where she goes now and is happy and safe and loved and part of an amazingly special community. Elin will never know anything of the life she might have led had things not gone so catastrophically wrong on the day of her birth three years ago and as each day goes by as she gets older, I strive to forget it too, because to remember simply hurts too much.

Tuesday, 7 June 2011

Tuesday, 24 May 2011

Sunday, 22 May 2011

Hard Times

I feel bad for coming back to my blog when I have negatives to report. Ultimately I want this to be an uplifting account of raising a child with C.P, but the truth is I don't always feel uplifted. I am finding things tough at the moment. Its largely due to the same old problem of Elin not sitting in anything for any length of time. On the face of it this sounds trivial, but its anything but. It is affecting my daily life, and Elin's, massively. She is nearly three, she is over two stone and I can no longer carry her around when she decides she doesn't want to lie or sit down. This in turn means I have to put up with the screaming if I need to do anything and,as I have always been hopeless at putting up with Elin crying for any reason, I have to cut short what I am doing and pick her up, thus pinning myself to the sofa. She stops immediately when picked up, I hasten to add. It's frustrating to say the least. Perhaps the worst manifestation of this problem is that we cannot go out. Literally. She screams blue murder from the minute she is strapped into her car seat to the minute she gets out, however long the journey. I could actually put up with that if she would only sit in her wheelchair when we reach our destination. But she won't. She twists, thrashes about, screams, sweats and eventually starts shaking which looks exactly like a seizure (but isn't). This means that whenever we go somewhere we have to stop every few minutes to get her out, calm her down and put her back in. She goes stiff, shakes and flails her arms around which not only do I hate to watch but of course it draws extremely unwanted stares and looks of sympathy in an already stressful situation. When she does this I know how unusual and scary it can look. I dont want people to see the spasming disabled child and look away, I want them to see her beauty and her lovely smile and I want them not to feel sad for us. And I want to not feel sad for myself and for Elin, but this situation is making it so difficult not to start sinking into a pit of the dreaded self pity. Exhaustive internet research brings no answers and neither do doctors or health care professionals, everyone is basically puzzled. All I know is it's got a lot worse and though this may be a wonderful and welcome nod towards increased awareness on Elin's part, the sad truth is it makes for a very un-manageable day to day life! What will happen when I can no longer lift her at all? I cant even imagine. ;-(

Saturday, 19 March 2011

When it hits it hits you hard...

Burst into tears in Colour Supplies today. Had no idea it was coming, took me totally by surprise and was suitably embarrassed and thanked god nobody was around to see, though I suspect the man on the paint counter was slightly terrified there was a crazy crying lady in the store. Not done that for ..ooohhh....ages. It was a little pink bike, lined up next to all the other big bikes. It was glittery and it had those ribbon tassles dangling from the handles. It was the kind of bike Elin would most definitely be learning to ride on and for the split second I clapped eyes on the bike the image popped into my head of her on it, bunches flying in the wind. Hence the spontaneous tears. Christ this is tough sometimes.

Friday, 11 March 2011

Elin has started school!

What a terribly long break from my blog! I wish I had the time to update more regularly, but sadly just lately it would appear that Elin has given up sleep for Lent, and thus evenings are spent staring mindlessly at the television or sleeping! Well, what has been happening in the world of Elin since I last blogged? Mainly ..she has started school!!! And we are so proud our hearts could burst. Not being of 'proper' school age yet she currently goes just two mornings a week. For the first 2/3 weeks I was lucky enough to accompany her to school, to help her settle. Of course it's more likely that I merely cramped Elin's style in front of her new friends and it was in fact me who needed to settle! Anyway, settle she did. What a thoroughly awesome place her SEN school is. Fantastic resources and a staff who talk of the children as though they are family. It blew my mind that we have access to a place that can cater so brilliantly for Elin's very specialist needs. Never mind how cute she looks in her school uniform of course! I had no reservations about her going to school, but I must admit the first time she went by a taxi minibus on her own (not totally of course, she has great carers on the bus but I mean without me) I did burst into tears at work!! It suddenly struck me, as these things occasionally do, that she might not know where she was, having nothing familiar to her surrounding her, and the thought of this broke my heart. Of course I needn't have worried. Elins home school diary read that she had smiled all morning and 'could not have had a better first day at school'. My pride was as fierce as it was overwhelming. A huge milestone which once upon a time, in the dark dark days at the special care baby unit , we weren't sure she would reach. Elin has had many adventures at school already and we are lucky enough to receive photos home of her enjoying many activities which I put in a scrapbook. I am sure my blog posts will include lots of school news in the future now. Where would parents like me be without places like this school? Places we can have absolute trust in to not only care for her but also to educate her (in her own special way) and help her develop to the best of her ability? There is a lot wrong with this country's governments priorities but as far as provision like this for Elin goes it makes me think Britain truly can be a Great occasionally :-)
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