Living with Cerebral Palsy- My Journey

My first, my last, my everything.

2012-02-03T05:48:00.000-08:00

Well it's been a pretty awesome time for little Elin since the New Year. She is currently having one of the best 'runs' of good health we have seen since- well, in a long time! Her routine is excellent, she is having a brilliant time at school and has EVEN stopped crying on the bus. I can't tell you how much nicer it is to put her on the school bus smiling instead of screaming. Then, when the bus arrives back home at dinner time and the doors open for the lift to come down- NO CRYING! The silence is music to my ears. She has a little nap after school every day which is sooo cute- she has been tired out from all the playing and hard work! In general she is calm and happy. This means I am calm and happy. Life feels good again. However just recently I find myself being plagued by thoughts and memories of Elin's birth, which was so traumatic I frankly would rather never think of it again. I would like to erase it from my memory, like 'Eternal Sunshine Of The Spotless Mind' and yeah, I'm aware of how sad that is. But there was no happiness surrounding her birth only sadness, shock and deep, deep grief. I can hardly believe we had to go through it. In the past three years I have become very very good at burying the fact that I never saw her, held her. That we were told above all she may die, or be severely disabled if she did survive. That we spent those hours by her bedside watching her wired up to all the machines and the slow realisation that things had gone very, very wrong. So why am I thinking of it now? Maybe because more and more people my age are starting to have babies. Maybe because I am broody and I know somewhere in me that Im not done, that I want to be a Mummy again, that I want to try and claw back an experience taken from me. I want to have a baby and savour every moment, not want to wipe those first few days from memory. But I can't, too paralysed by fear. Like being in a horrific car accident then getting behind the wheel again. I can't. But I want to, badly. In the meantime I have to find a way to deal with the re-surgence of grief and upset from Elin's birth. I have to bury it again, before it consumes me with thought's of 'what if?'. I also have to find a way of not wanting to burst into tears when another person I know has a baby, and comes home, and has a wonderful time and it's everything they wanted. Because I really don't want to be that person, that jealous, bitter person that is hiding inside behind my memories of a terrible birth that was supposed to be so wonderful. Supposed to be my first, my last. My everything.

Happy New Year?

2012-01-07T05:34:00.000-08:00

Started the New Year very positively after a poor end to the year frankly. Elin's last seizure was Christmas Eve and despite an ear infection meaning she wasn't well enough to travel to the family Christmas in London on boxing day, she improved greatly once Christmas day was out of the way and we managed a lovely happy and relaxed week before going back to school. Elin has had a smashing first three days back at school but has acquired a cold- probably shock from going out so early in the morning! Last night we had a terrible night and then the inevitable happened- a seizure at lunch time today :-( Can't say I didn't see it coming, she was 'off' last night before I put her to bed. Anyway normally this would be upsetting, as every seizure is upsetting. But this afternoon was the afternoon that we were supposed to be taking both the girls to a special showing of the 'Sleeping Beauty' pantomime at Theatre Clwyd. Elin was dressed like a princess looking absolutley gorgeous and ten minutes before we left she started to have a seizure. It took a long time to stop. I was starting to get a bit twitchy (too long and it's ambulance time) but I think that was more to do with the fact that she had slept all morning so the buccal could not take hold as readily. Anyway Paul and Caitlin went to the Panto (no sense in everyone missing out) and Elin and I were left here feeling very sorry for ourselves. As she is now completely zonked on rescue meds there seems no point in dragging her out in the cold to sleep through a show. It's not even that we are missing the Panto, I am not the world's biggest Panto fan anyway. It's that we are missing the opportunity to do something nice as a Family. The opportunity to do something normal that every other family would take for granted. Also it's that we are missing the opportunity to gather with other families and for me, other Mum's that we don't get to see that often. Mum's who know what you are going through and kids the same as Elin. What I am really struggling to get my head around is that the special showing of the Panto happens one afternoon per year. Seriously WHAT are the chances of that co-inciding with an afternoon in which she has a seizure? That has to be pretty slim??? In siuations like this it's really hard not to feel sorry for yourself, or for Elin. Im trying not to though, believe me. The end of 2011 was a hard time for me and I really don't want to go back there. I really want to believe 2012 will be different and better and that our luck will change. So- deep breath- Happy New Year and let's hope that it actually is.

Hi ho, hi ho....

2011-12-08T05:16:00.000-08:00

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

Keep the Faith..

2011-11-23T12:04:00.000-08:00

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......

Happy Talk...

2011-11-10T11:52:00.001-08:00

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 :-)

A miraculous recovery!

2011-11-02T07:44:00.000-07:00

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. :-)

Not so happy half term

2011-10-28T12:55:00.000-07:00

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???

Tesco is tough..

2011-10-16T12:29:00.000-07:00

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 lists...Anyway...it 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 to...it'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 shopping...it would probably save me a fortune in kids clothes as a bonus if nothing else... :-)

Helpless feelings are hopeless..

2011-09-29T12:54:00.000-07:00

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"

Facebook friends?

2011-09-27T11:20:00.000-07:00

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.

Life is like a box of chocolates....

2011-09-18T06:36:00.000-07:00

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 you....it 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'......

2011-09-18T06:06:00.000-07:00

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.
P.S THE PHOTO SHOWS ELIN ON THE MORNING OF THE SEIZURE! No clues of what was coming!

What a week!

2011-09-09T12:37:00.000-07:00

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!

It's all in the timing....

2011-08-25T23:45:00.000-07:00

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.

More sweet, less bitter...

2011-07-21T02:30:00.000-07:00

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

Ouch!

2011-07-01T07:48:00.000-07:00

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.

Elin says Hiya!!

2011-06-07T05:51:00.000-07:00

Clever Elin!

2011-05-24T12:40:00.000-07:00

Hard Times

2011-05-22T01:20:00.000-07:00

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. ;-(

When it hits it hits you hard...

2011-03-19T15:57:00.000-07:00

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.

Elin has started school!

2011-03-11T12:45:00.000-08:00

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 :-)

That was quite an absence!

2010-12-12T09:20:00.000-08:00

Hi all! Wow I knew I hadn't updated in a while but had no idea it was so long! This is mainly because I guess I haven't felt the need to, that is, I am always drawn to my blog to vent my fears and frustrations to do with Elin. Thankfully, things have been going amazingly well lately and of course I am wary of saying that, but it's true! Elin has been a superstar. We feel since she turned two in July that things have really settled down for her. She travels better and her seizures are more infrequent. She is such a happy little soul and has been so calm for such a long time now. We even managed to get to London this weekend with her..unthinkable twelve months ago! I have read that children with severe brain damage can take over two years to even start making sense of the world in any way. This is what we feel is happening with Elin. She is beginning to understand her special and unique world. We have started the statementing process for school and I am so looking forward to Elin going, where the teachers are experts in her condition and she will be able to grow and develop even more as well as being around other children. We are also well underway with the process of adapting the house for her. She will need wheelchair access, ceiling hoists, a lower floor bedroom, a special hydraulic bath to name but a few things. It means we will need an extension of course. It's a lot to get your head around, it fairly easy to carry around a two year old...but what happens in ten years time when she is a teenager and still unable to move? I don't like thinking about that too much, but clearly we need everything in place well before she gets too heavy to lift. We are lucky we live in a day and age where these things are available to us. Fifty years ago Elin would probably have had to live in a hospice ( she definitely would not have her Mickey button for feeding! ) so we have to thank God for that, that she was born now and not in a time when we could not have looked after her. That would have broken any parent's heart. I got reminded today of a saying I love and I think it sums up mine and Paul's feelings towards Elin's condition brilliantly: When life gives you lemons, make lemonade :-). Elin is definitely my lemonade.

Go away seizure monster!

2010-09-26T06:35:00.000-07:00

Increased seizure activity in my little snopple chops this past week :-( Culminated in two fits requiring buccal, one on Wednesday afternoon and one on Thursday morning. Don't think she recovered properly from the seizure on Wednesday afternoon to be honest, which may be why Thursday's fit happened. A perkier girl Friday, then back to being floppy and uninterested in anything on Saturday. This prompted a little visit to the local Children's Ward, to which we have open access (meaning I don't have to go through A and E , I just call up, say we're coming and we turn up. It's an absolute godsend). Luckily the ward was quiet and the lovely Nurse and Doc saw us strait away. I just wanted to get her checked. It's not as though I am a fussy Mum, when you consider her problems. I usually know when something is wrong and we not been to the ward since May, so I felt ok about taking her in and asking them to check her over. They found nothing untoward. I concluded with the agreement of doc that the most likely explanation is teething, which dogs poor Elin to death as she cannot chew anything or put anything in her mouth to relieve it. Lots of tears and crying at bedtime, which hardly ever happens. The sound of Elin crying rips my heart out. So its a good job we had a stockpile of calpol and nurofen!! I felt so bad for her and so frustrated that she cant tell us or show us what's wrong. Lo and behold this morning, in a regular inspection of her gums with my fingers ( a dangerous business) I discovered a tiny bit of a back tooth poking through which hadn't been there before. I knew it!!! Lets hope that explains the increase in seizures, as it so often does, and lets hope the rest of the pesky teeth cut soon! I hope the seizure monster leaves us alone for a bit and goes to visit someone else now!!

Amazing Article.....says it all please read...

2010-09-21T13:20:00.000-07:00

www.independent.co.uk/life-style/health-and-families/features/profoundly-disabled-we-wouldnt-have-her-any-other-way-2072088.html

I'll be your dentiiiist!

2010-09-08T13:45:00.001-07:00

First trip to the dentist today! I think Elin must have been excited because she sat brilliantly in her chair all the way there are for a good while in the waiting room before I got her out for a cuddle. She was doing her laugh which is extra loud and can sometimes sound like she is in some kind of pain....I noticed some people doing the 'look everywhere except at the noisy child in the wheelchair' eyes, but I didn't care at all, except I wish they had a good look cos they would have seen that she was laughing and how cute she looked. Anyway, enter dentist call in Elin's name...woah! Hang on a second! He appears to be some sort of cross between George lamb and George clooney! Well ok maybe not quite but he certainly had an air about him and I don't get out much, ha! Elin must have agreed because she flirted her way through the appointment. She noticeably looked around at the halogen lighting and the bright shiny white walls. Super-dentist was amazing. He spoke to her and even stroked her nose -her favourite thing!- without me telling him to. She did one of her best ever flashy massive smiles and opened wide like the best of them and he had a good look. He said her little gnashes were fine and as I worry about aspiration I should brush them without toothpaste, twice a day. Even though she doesn't eat anything orally, her teeth will still collect bacteria and produce plaque, so you have to 'disturb it'. Good job she had a fab new flashy toothbrush for her birthday! I was so proud of her today. Next time I am going to ask if she can have a sticker :-) :-)

2010-08-23T10:18:00.001-07:00

The great divide!

2010-08-23T10:10:00.001-07:00

Well, the website is up and running for my ex- university flatmate and good friend Laura Doddington's boyfriend, the awesome Dave's cycle across the great divide in order to raise funds for Elin. I cannot express how humbling this is and what it means to us as a family that somebody would take on such a challenge in Elin's name. To say it restores your faith in humanity would not be too great an accolade. Not only this, but the fact that so many people you don't know have read Elin's story on the website and donated has already caused us to have gigantic lumps in our throats! The site went live this morning and has already raised our beautiful girl 200 pounds. Simply incredible. The funds will be spent on varying forms of sensory equipment, to kit out a sensory room for Elin. Please visit the website to find out more..
www.davidridesthegreatdivide.com
X

Walker hope....

2010-08-21T09:05:00.000-07:00

Bit of a weird thing happened the other day. I had a dream that Elin was walking, and it was lovely because I could feel her walking right by me and holding my hand like all the other kids instead of being draped over my shoulder. I felt ten feet tall. Waking up from that was pretty tough but I soon forgot about my wonderful fantasy until the physio arrived and mentioned that there is a rep coming to the health centre with a special walker and she wants to try Elin in it. It would be to see if Elin could move her legs independently at all in it, cos if she could it would basically 'walk' her around! Very slowly I imagine, but still. They are hopeful because she will kick her legs when lying flat on the floor and it could be a skill that translates to this especial walker. They warned me not to get my hopes up, that she may be too little yet. I am trying not to think about the possibility that Elin could achieve a tiny, minuscule thing like that by herself, because forget fame and fortune, these little steps, that will be so difficult for Elin to manage and yet are what every other parent takes completely for granted, are the things that our dreams are made of now. So I will try not to think about it because I dare not hope that our dreams will come true, I am way too scared of the fall.

Beat the birthday blues....

2010-07-27T11:23:00.000-07:00

Quick update: Elin had the most amazing birthday, she had two parties, 60+ cards, £150, 38 guests at her birthday BBQ and countless presents. She was happy, smily and relaxed and a good time was had by all. What a way to beat the birthday blues!! She is *touch wood* havin a good week and we hope will continue to do so! Life feels pretty good right now- I'm sure the fact that Paul and I have 6 weeks off is helping a great deal...not having to rush here and there, hardly any hospital appointments, it's alllllllllllll good my friends!! Yeeeee Haaaaaaaaaaaaaa !!!!!!!!!!!

Birthday Blues?

2010-07-21T06:15:00.000-07:00

Elin is 2 tomorrow. Huge cause for celebration, obviously (and believe me there will be celebrations she's having two parties for goodness sake!) but I would be lying if I didn't say I had mixed emotions. Extremely bittersweet memories. The sounds and smells of the maternity ward, the labor, the pain of course!, the expectation, the excitement. Then, she was there. And it wasn't right and nobody was smiling and they took her strait to the resus table and the midwife's face. God, her face, it was white as a sheet. When the doctors ran in like something off the television. I knew she had gone, my baby who I hadn't even seen. I knew she was hovering between life and death. And they worked and worked like ants until a triumphant exclamation "we have a heartbeat". And they lifted her to whisk her to intensive care and the life support machine and they said take a look, take a quick look, Mum. And I couldn't. I couldn't look at her I was terrified, petrified to see her. And words kept coming out of my mouth and I could hear myself but it wasn't me speaking. Then she was gone and so were they and the midwife had taken her hands away from her face and it was over. My baby had been born, I didn't see her or touch her, she was gone to a room of wires and beeps and we were left alone. I told Paul to call my Mum and that's the last I remember. Whole thing no more than 6 or 7 minutes. And in that 6 or 7 minutes, a lifetime worth of change, irreversible and complete.

My little sweet pea has a pod!

2010-07-08T07:02:00.000-07:00

Well, today the P-Pod arrived, it was in the back garden when I got home like some kind of mother-ship waiting to be boarded! Elin has been in it now for well over an hour, even fell asleep in it! But I confess I feel this is more to do with the fact that she seems to not be herself today, is completely listless and twitching constantly (so different to yesterday:-() and therefore cannot really be bothered to fight against being put in a chair for once (Elin believes all chairs are evil, which she proved by christening said P-Pod within 5 minutes of being put in it, praise the lord for vanish stain remover!). It is bigger than I remember but she certainly looks comfy in it, I hope she grows to like it. It could not have arrived at a better time, as she has been chokig continuously today and I would have struggled to leave her lying down for even a second. All hail the P-Pod!! (For now. Updates will follow) x

Things are lookin up..

2010-06-28T12:49:00.000-07:00

Since my last post we went to Alder Hey and saw the Neuro. Not anywhere near as scary as I had thought. He was reasonably relaxed about the increase in fits of late and seemed to think it was still related to the infection Elin had at half term. He doesn't want to change her medicine as that could cause further problems. He said if they continue to increase he would get us back to have a re-think. Went home feeling more confidant and slightly more chilled. Until Sunday. Being Father's Day and having a meal out planned, Elin decided it would be a good time to shatter my new found chilled attitude and have yet another fit. Despite what the Neuro had said, the negative worries and stresses crept back in and I found it hard to focus all day. As the Neuro had advised we wait another 3/4 weeks before calling him, to see how the pattern of fits developed, there was nothing to do but get up on Monday and just pray we had a better week. The good news is, we did! What a difference in Elin this week, I kept waiting for another fit, but it never came. An amazing weekend with a friend of mine who was visiting, Elin was just on top form and my friend got to see her at her very, very, best. Just had to be careful to keep her out of the heat poor thing, it really disagrees with her. Not so relaxed and happy today, but then I think she had used up all her smiles at the weekend! Just hoping, as always (my life is made up of hoping and wishing) that the good spell continues .............

Quick update...

2010-06-17T12:53:00.000-07:00

Hi Elin fans. The antibiotics DID work and worked well, within two days we had our girl back. We only had to breathe on her and she was laughing. Great stuff. A whole week of bliss.Then Saturday, which historically is not a good day for Elin. Paul uttered the immortal line 'we should do something together and leave Elin with your Mum' which can only really mean one thing: Yup, Elin decided to have a fit exactly half an hour after we dropped her off and just as we were in a particularly lovely Mexican restaurant settling down for lunch. Luckily I had taught Mum how to administer rescue meds and give Mum her due she didn't interrupt our rare break together, I actually phoned her to 'check' on Elin but in reality I think I knew a fit was brewing. As is the custom, Elin went strait to sleep and Mum encouraged us to stay out and about for a bit. Cue Paul and I wandering aimlessly around shops trying to enjoy ourselves when really we just wanted to be back home. Ho-hum. Back to normal on Sunday and again a very good week for our little monster, then came today. When I got her home after work I knew something wasn't right as I couldn't get her to smile and she wasn't with us. I guessed a fit was coming and it did at about four this afternoon :-( :-( :-( I can no longer put these down to her being poorly, or hot, or out of routine. She is having too many. Luckily we are booked for a visit to the Neurologist at Alder Hey tomorrow.....I am looking forward to what will probably involve a change of medicine, as it might help, but as always am irrationally terrified that he will hear what we have to say and somehow wash his hands of her, tell us there is nothing to be done. Of course this is unlikely ever to happen given the fact that there is still a list of meds he hasn't tried, let alone the ketogenic diet. But knowing the fear is irrational does not always make it any less horrifying a thought.

The rise of the machine!!

2010-06-04T14:19:00.001-07:00

The good news is I am back, ready to fight another battle. I am beginning to feel so much more normal and like me and much less 'wallowy' and feeling sorry for myself. The bad news is, the next battle arrived immediately, so it's a good job I was in full Sarah Connor mode...

Elin has cried all week. Can't decide if it's a good or bad thing that Paul and I were both on holiday from work this week! Anyway, it's most unusual as despite her complex issues she is a placid, happy little thing (obviously qualities inherited from her mother). We were convinced it was her teeth, as she has some especially razor-like ones beginning to poke through near the back and little bleeding bits on her juicy gums. She has been gagging constantly, had a poorly bottom and diarreah and the snuffles which all kind of points to teething too. Last night and this morning she perked up. We took a risk. We went to the seaside for the day. Bad idea! We got stuck in bumper to bumper traffic on the way. When we arrived, we managed to get as far as the busiest part of the lengthy promenade and Elin decided to have a fit. A nasty-rescue med-requiring-fit. So, in full view of all she was laid unceremoniously on her changing mat and I administered the wonderful candy-floss smelling medazolam. The fit stopped, Elin went to sleep and we continued onto the pier, albeit a little fraught and sweaty. This is where I noticed just how many people were staring at Elin. Not just looking, realising that yes, she was a special little girl in a special chair, and looking away. Properly staring at her. This pissed me off. I don't mind you having a look but you don't have to physically track us with your rubber neck until you can look no more. Anyway, down the pier we went. Had a dink, came back and Elin began to stir. It soon became apparent that she was still stressed. We had had to park miles out cos of the amount of cars so we began to walk back. I relented and took her out of her chair at which pint she began to fit again. We hugged her hard, sat down, got up but she wasn't having any of it. We raced back to the car, laid her in the empty boot and I gave her a second dose of the medazolam (unheard of, she usually has one dose a moth roughly) with the epilepsy nurse's warning ringing in my ear 'don't give her a second dose, take her strait to hospital' well, we were an hour at least from the nearest hospital so it wasn't an option and Elin's consultant had said he was happy if we needed to ever giver her a second dose. I then sat illegally with her on my knee, pretending to scratch my nose every time we passed a police car. Mercifully the fit subsided in the alloted ten mintes (ten minutes before complete and utter panic, presumably) and we went strait to our local hospital which in a tiny twisted way was nice cos we got to see some of the Nurses who are champions of the Elin fan club. We were there a few hours as the ward was very busy, but the blue angels brought me tea and sympathy so we can't complain. She was diagnosed with an ear infection which more than likely set off the fits and despite the doc wanting us to stay to keep an eye on her we brought her home (I am an old pro at this now) with antibiotics. If she has another fit in 24 hours we have to go back. God, I hope they work.

;-(

2010-05-29T11:38:00.001-07:00

WARNING: This post contains extreme 'feeling sorry for yourself' sentiment and may cause nausea in those of a more positive disposition.

At the moment I am not 'living with cerebral palsy' as the title of my blog suggests, merely existing with it. Things are tough, on many levels. I feel completely and utterly defeated. Somebody up there is sure taking the mick out of me and having a bloody good laugh at my expense. What's up big guy? Was there nothing on the telly tonight? Did you think you would hurl a few more problems at me and watch how I react for your own amusement? Actually, what I feel like-not to martyr myself in any way you understand- is the Terminator. He of the first film, who kept getting shot in the chest and getting back up again and taking more shots. I have been taking hits for two years- longer than two years actually if you chuck the IVF into the equation- with nothing to do but get myself back on my feet again. In an out-of-body experience way, I wonder how much of this one person can take, how many upsets and how many stresses. At what point does the Terminator stay on the ground?

Hair today.....

2010-05-24T02:53:00.001-07:00

RARRRGHHHH! Tough day on Saturday. Elin had been a little twitchy all week but nothing major to report. She was grand on Saturday morning- albeit a little sweaty on the hottest day of the year bless her! However, then came the time where Paul had to go off to visit his Dad out in Runcorn and as I had a much-needed hair appointment Nanny and Grampy once again stepped up to have some quality Elin time. I had arrived in town a little early for my appointment and so was happily browsing the New Look shelves when my phone went, my heart dropped into my stomach when the word 'Mum' flashed up on the screen. Apparently Elin had decided she didn't want me to have my hair cut and had responded by having a big fit. I can't tell you how scary it was to leg it back to the car and burn home in order to give her the rescue medicine- very aptly named I feel. Luckily she did respond to the meds and so a trip into childrens ward was not necessary, but there were a few minutes when I thought the fit was not going to subside as it was quite violent. Pretty scary for my poor Mum and Dad, who would have needed to call an ambulance had I not answered my phone in time, as you only really have a certain timescale to treat her when she goes into a big fit like that. Lesson learned- train Mum and Dad up in using the rescue medicine. Also and perhaps a more important lesson- don't leave it until the last minute to get your hair done!!!!

Elin responds to light..!

2010-05-06T06:20:00.000-07:00

Elin doing what impressed the opthalmologist so much- i.e clearly seeing the light (and inexplicably finding it hilarious!)

Wheels on fire.....

2010-05-01T09:04:00.000-07:00

Today we took Elin to town in her brand spanking new NHS buggy/wheelchair. Yup, that's right, we chanced it because the sign up to that point had been good. Guess what? We weren't disappointed!! Woweeeeee she sat in that chair all the way around the shops without so much as a sniffle. Now Im not saying this was just the chair. Mornings are always better for Elin, because she has her medicines in the morning which can take the 'edge' of things a little....but, staying positive, I think we're onto a winner. I could get used to this, I told her, wheeling her around like everybody else, taking my time, actually stopping to look at things. A joyous occasion which I hope can be repeated! One other thing has changed. The chair is fairly obviously a specially made chair for a very special little person. This meant LOTS of 'looks' from other shoppers. Far more than I expected (and I had expected some). But I wasn't bothered at all, at the end of the day people are only looking out of curiosity, it's not often you see such a little person in such a special chair. I cannot believe anyone would ever look out of malice and so I am happy for people to look and to see that not all children are the same, and some children do need special equipment just to get around. Maybe I won't always feel that way, maybe some day when Im rushing and tired and cross I will be sick of other people's stares, but not today. Today nothing can touch me because I took my daughter shopping and ENJOYED it and that's 22 long months waiting to do that. If patience is a virtue I think I should be cannonised by now!!

The first time..ever I saw your face....

2010-04-27T06:51:00.000-07:00

The news from Opthalmology is good. We went to Alder Hey yesterday and the consultant is very pleased with her vision developments, however small. She can now follow a light for a period of time and look toward a light. She also responds to lights being turned on and off in the room and to me putting my hand in front of her eyes then taking it away again (she LOVES it, it makes her laugh her head off). He admitted that when he first met us last June he thought Elin was completely cortically blind (where the brain damage is so severe that it cannot recognise what the eye is seeing and therefore the child is, for all intents and purposes, blind). He was surprised to discover, after electronic testing, that Elin's brain was indeed responding to some of the eye tests they carry out, and that some images were being transmitted through the pathways in her brain to the cortex (which is the receiver at the back of the brain). He was sooo pleased with her it was infectious ;-) He gave us some more 'eye training' tips, which was handy. He also said Elin's eyesight will continue to develop, however slowly, until she is about eight years old. This means then, that there is a chance for her. Though presently she can only see shapes, light/shadow, colours and the outlines of things, there is a chance that one day she will be able to see a little more. Then came the cherry on the cake...one day, Elin may be able to see my face. He has seen it happen in children like Elin before. They become able to visibly recognise their parents, where they respond entirely differently to a face they don't know e.g a Nurse. I hope he is right, I hope one day Elin can see my face because there is no face in the world that loves her more and I think she deserves to see it with her own eyes. What a miracle my daughter is ;-)

Another day another.......seizure ;-(

2010-04-25T09:54:00.000-07:00

Baaaaad day today. Feeling very upset as Elin had another fit today- exactly a week since the last one, which is weird since prior to that we had gone 3 months without one. I suppose there is no rhyme or reason to it. Unfortunately this time, we were out in Llangollen. Ended up administering Medazolam in the middle of a pub lunch.great. Kept very calm as Caitlin was with us and I never want her to feel frightened by Elin's condition, I could see her turning away so she wouldn't have to see her sister fitting. It broke my heart to see, she's only 12 it's such a lot to deal with. Found it very hard to relax after that, we had to basically just come home. As soon as we dropped Caitlin off I burst into tears- had been holding it in. Feel like screaming we can't even go out for the afternoon with the girls. It's so hard. Elin still not right, but better now. Hopefully fine after a nice long sleep. The cherry on top of the cake is that this coming week Elin has four hospital appointments- one in Alder Hey on monday, Wrexham Maelor on tuesday and then TWO appointments in the same department on wednesday, one at 11:00 and one at 3:30. Arghhhhhh!!!!! That's seven appointments in a fortnight!!! That's about six appointments too many for my liking ;-(

Don't do it!!!

2010-04-20T11:53:00.000-07:00

Have come on here to distract myself from messaging a pregnant barely-know-you-facebook 'friend' who has just announced they want a home birth. DON'T DO IT!!!! It makes me feel like vomiting with fear. I went through a whole labour being told that Elin was fine, her heartbeat was fine. Five minutes before she was born everything was 'fine' according to two midwives in a room full of equipment. But everything was not fine, Elin was unexpectedly stillborn and only here today because she was able to be instantly resuscitated by on-hand doctors and immediately ventilated on life support. Yes, I know it's rare. 1 in 1,000 births end that way. But what if that 1 is you, like me?? All the midwives kept saying after they had taken Elin away to save her life were 'thank god you didn't have a home birth' There is simply no way she would have survived. I can see the appeal of home births and people may not be aware of the dangers- I certainly wasn't before it happened to me. But seriously, how could you live with that decision if something did go wrong and you couldn't get to the hospital in time??? I just don't understand why anyone would put their baby at risk that way. DON'T DO IT !!!!!!!!!!! Not for the sake of having to spend a night or two in hospital!!! I would never say this to anyone wanting a home birth, it's not my place. But I can say what I want on my own blog so there, I've ranted (again) and I feel better for it. ;-)

A letter to Cerebral Palsy

2010-04-12T13:42:00.001-07:00

Dear Cerebral Palsy

ARGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I just want to take my daughter out in her pram!!!

I don't want to get halfway through a walk in the sunshine and then have to balance her over my shoulder whilst pushing the pram back home because she has discovered a way to work herself into a seizure as soon as her bum hits the pram seat!! This MUST be a behavioural issue surely?? But how is it possible for her to make herself have a seizure, which stops when she is picked up??? How is it possible that she is nearly two and I still can't so much as take her to the flippin shop or go for a pleasant stroll???

ARGHHHHHHHHHHHHHHHHHHHH I HATE you Cerebral Palsy. Screw you Cerebral Palsy with all your intricate, difficult, hateful nuances that no other parent could even begin to imagine! Sod off and leave us in peace you evil idiot!!

Yours sincerely a very frustrated Mummy.

P.S Ah, that's better ;-)

Orthapeadic + X-Ray

2010-03-25T13:01:00.000-07:00

Hi Elin fans just a quick update ...yesterday I took her for her 6 monthly x ray of her pelvis. She needs these to ensure that her hips have not popped out of their sockets, which is a common problem in children with little or no mobility. If they do pop out, it may require an operation to fix them. Apparently, no amount of physio can prevent this from occurring, it just happens. Luckily for us they are exactly where they should be (phew...big sigh of relief). Also, I saw the consultant for him to assess her back- we have to ensure she is not developing curvature of the spine, again owing to her lack of mobility. Lucky again, everything seems fine. He doesn't want to see us for 12 months! Hurray! Good job it was good news as I was inexplicably on the brink of tears today . HATE going to the hospital - so many painful memories- which is ironic given the amount of time I have to go there. Luckily most of Elin's appointments are in the child health centre which is fine, it's the main hospital I just can't stomach- the smell's and the long corridors, just takes me back to the weeks we spent there after she was born. Also, x -ray is right next to ultrasound and I saw at least three happy couples bent over scan pictures as they were leaving- prompts very bittersweet memories for me cos I remember it so well. Elin was safe then. She was perfect in fact- the sonographer said so. I find it so difficult to deal with. Also not helping was manouvering a large buggy with a mind of it's own piled high with mine and Elin's coats, two bags and Elin's sepcial boots between the orthapaedic and X ray departments, whilst simultaneously propping Elin over my shoulder ( as usual, Elin had decided that actually riding IN the buggy was not an option she was willing to take) and trying not to drop her. The hospital was boiling hot and we had to wait 40 minutes for the appointment, during which time Elin decided to play to an audience in the cramped waiting room and do her best choking impression followed by at least 20 minutes of squeking- ensuring many sympathetic gazes from the other Mum's (but also inquisitive eyebrow raises and 'Awwwww' faces to each other when they thought I wasn't looking) so by the time we left, despite the good news, I was feeling a little frazzled. Thank heaven for the fab blue badge, which meant that I could park practically right outside the hospital door, worth it's weight in gold. We were home before we knew it (second big sigh of relief of the morning) had an hour's break before our next appointment- thankfully a home visit with the speech therapist (feeding expert)..but that, ladies and gentlemen, is another story.....

Another hospital visit...

2010-03-17T13:13:00.000-07:00

A terrible night last night. I cannot describe to all you lucky people out there who have healthy children what it is like to wake up in the night and discover your baby having seizures in their cot. Last night Elin had a raging temperature. She was burning. It was gone midnight and I had awoken thinking it was just her usual middle-of-the-night wake up. But she practically sizzled when I touched her and though we administered the trusty old calpol immediately, stripped her of her pyjama bottoms and socks/blankets etc and mopped her poor, fevered brow, her temp was still reading 39 after an hour. Added to that was the constant spasming, twitching and seizing which invariably accompanies such a high temperature with Elin's condition. To watch her wide eyed, confused expression while her body writhed and twitched was an absolute horror. I will just never, ever get used to it. Fortunately after a few hours and some Nurofen, she was able to relax enough to sleep. I, of course lay there in the consuming darkness waiting for something bad to happen. It didn't. My alarm clock set of a seizure in her sleep, so I knew we were still in a bad position this morning. Luckily the ward were as welcoming as ever and had her diagnosed with an ear infection and back home again with antibiotics in good time (and we got to see our friends the Nurses who are wonderful and treat Elin like a celebrity) She slept practically all morning and all the way home. I put her in her cot without removing her coat or shoes, thinking she needed and frankly, deserved, a rest. She seemed a little brighter this afternoon, which was lucky as we had yet another appointment- thankfully a home visit- but still very grumpy and twitchy. I seriously cannot believe this sometimes, that this is my life, that it is her life. I tried to pray for her again tonight but I couldn't-again. Because I prayed every single night that I was pregnant that my baby would be healthy. I haven't prayed since the day she was born. I can't. I don't think there's anyone there.

Latest visit to the neuro...

2010-03-07T11:26:00.000-08:00

Hi all Elin fans out there this will be a quick update and probably rather boring but on Friday we went to Alder Hey (again-over 20 trips now at 100 miles each time- wonder if the nhs will cough up for the petrol??) and met with Elin's neurologist. I had called them on monday and they fitted us in strait away which was really good of them, as I had a letter saying our next appointment was September!! Errrrr...I don't think so!! Anyway it was a fairly worthwhile visit- apart from a ridiculous Nurse who weighed Elin and should have had a sign on the door saying 'Sense of humour not welcome here' but that's another story- he was pleased with her progress...yay...he actually used the word thrilled but he never even see's her at her best- she won't perform to him lol she is a monkey, it's so frustrating but nonetheless he was pleased so that was good news. We then raised the issue of her constantly 'rotating' or as I call it, 'twisting' unless she is on your knee...which makes travel almost impossible as journeys of any kind become unbearable as she thrashes around against the restraint of the cars seat or pram and basically just screams and sweats. He decided to up her dose of baclofen- a medicine she is already on designed to combat these rotations and apparently very effective when you find the correct dosage. I have to call him in 14 days if she is still no better and he may change the medication altogether then. Fingers crossed it works, changing medications makes me very nervous. So that's where we are. Her first wheelchair (which is actually much more like a super-posh buggy called the Jazz Easy) is on order too, lets hope when it arrives she can sit in it without getting stressed! As the weather improves I would love to take her for a stroll up and down the lane and-shock horror-maybe even further afield...but I won't count my chickens just yet- I have learned not to! As usual I will merely keep my fingers crossed and hope for the best.....

24 little hours

2010-02-27T13:32:00.000-08:00

Feel like deleting my last post reading it back it seems so negative! But no point in censoring a blog really is there- it's supposed to be a true reflection of life after all! Great day today, Elin really well- helps when we don't have to leave the house I think she is a home-bird! And no need for any car/buggy related stress. Just me and her most of the day as Paul at his Dad's. Lots of fun and snuggles. Elin not in any pain or uncomfortable- If only all days were like this!!! Feeling very blessed today. Gorgeous day, gorgeous girl. ;-)

Today I am mostly thinking...

2010-02-24T12:07:00.000-08:00

...That it never gets easier really, you just get more used to it never getting easier. We watched Eastenders last night and desperately tried not to get upset when the baby was born not breathing, but both failed miserably!!. It was the Mum's cries that got me and took me back to a place I never want to think of again. Stupid really, it's only a soap, they're only fictitious characters. I wish I could erase Elin's birth from my memory though, the horror of it- like in 'Eternal sunshine of the spotless mind' I wish I could choose to have that whole memory wiped because sometimes the pain of it is too much to bear. Happy ending for the Eastenders characters of course, no soap would ever dare run a storyline depicting what happened to Elin. People simply don't want to know about it. How many stillbirths/poorly babies/children are there in soaps? Exactly. Bad things happening to children /babies just doesn't make good viewing does it. Emmerdale was brave once in running the 'cot death' storyline and it was brilliantly done. But they ruined it by magically solving the mum's problem when she discovered the baby had been swopped at birth and her baby was still alive and living in the same village (ha!). Pisses me off. Its about time they started thinking outside the box and reflecting a wider society. Imagine how much better people would understand disabilities like Elin's if it was shown in a soap like Eastenders which can get 16 million viewers!! But I digress. I suppose this tirade is really owing to the fact that I heard more news today about another birth in my family group, lovely news once again but very hard to swallow. How come everyone else in the world can give birth to a healthy baby, enjoying the feeling, the excitement, the wonder, the pride???? I can only imagine what it's like to hold your newborn in your arms, feel the relief that things are ok and see the limitless future stretch before you. Why did this have to happen to us??? Nope. It doesn't matter how much of a 'good' day I'm having. It never gets any easier.

Better and worse....

2010-02-12T13:12:00.000-08:00

Just a quick update for all you lovely people who follow the story of my beautiful girl :-)

After another hospital visit last sunday due to her erratic breathing and high temp, she has had a fantastic week breathing wise! I think her nose is FINALLY healing after the operation and the antibiotics the hospital prescribed cleared up the little infection that must've been lingering somewhere and making her feel rotten :-( For the first time in months she is breathing clearly! Cant tell you how happy this has made us. She is also sleeping more normally and back to only waking twice a night (yay!)

However her seizures are not so good, in fact she is having loads of little ones but touch wood no big ones to speak of . The little ones are hard to watch though, her chin wobbles unnaturally or she'll fling out her arm for no reason or her head will shake. I can cope with them when its a few times a day but lately its been every couple of minutes or so :-( Tonight we found a possible cause- a new molar poking through her gum on the left side- new teeth always upset her and this one is a monster. Because she can't eat anything or lift her hand to her mouth, her teeth cut really slowly- god it must hurt her. Anyway Im hoping once the tooth of doom has broken through that her seizures will calm down, then we will be back on an even keel- it feels like we sort one thing out and another problem arises- I feel like shouting 'Give her a break!!' but I wouldn't know who I was shouting at. Tonight I read of a girl like Elin who is 10 years old. She can say 7 words. This sounds like a miracle to me. I would settle for one word. It would be 'Mum'.

Recovery

2010-02-03T13:48:00.000-08:00

Well the two weeks since Elin's operation have been pretty hard! Her breathing did not improve and so for the last two weeks we have been watching her really struggle to get any air in through her little nose :-( She has not seemed to have worked out that she can breathe through her mouth, so a blocked nose is pretty bad news for her. Nights have been the worst, with her being up for hours at a time (usually starting around 2am) because she is simply snorting instead of breathing and cannot get any rest. Suffice to say we have been exhausted. She would then go to sleep early morning and sometimes sleep through until nearly noon. The first morning I was back in work after her op the childminder text to say Elin was still asleep and it was so unusual I was convinced she had somehow slipped into some sort of delayed post-operative coma!! Luckily Heather was on hand with some saucepans and spoons to rouse her! Stressful. Anyway the day before yesterday, after 11 days of listening to her snuffle and snort and being up with Elin practically all night, I took her to the hospital to get her checked out. convinced something dreadful must have happened for her still to be in such a mess all this time after her operation. They were really thorough on children's ward and even got an ENT doctor to come and listen to her. He agreed she was noisy, but said it was to be expected really after such an op, cos of the nasal swelling etc. He advised to keep her nose moist and carry on with the nurofen to reduce swelling. *touch wood* today is the first day we have seen improvement. Please god let this be the end of the breathing issue- she has so much to deal with already :-(

Operation Alder Hey...

2010-01-23T04:51:00.000-08:00

This photo was taken 30 minutes after surgery!!! As usual I fell apart after taking her down for anaesthetic- it never gets any easier, especially as she was so happy this time then they put the mask over her face and she fought it with her hands and even her little feet were shaking OMG it was horrible. It seemed to take forever, then they removed the mask and said 'Give her a kiss Mum' and ushered me out- ARGHHH horrible!! Luckily all went well, they widened her left nasal passage and took out her adanoids. Hopefully this will help her breather more easily but up until now we have seen no imrovement- in fact she is struggling even more but the doc says it will take a couple of weeks for the swelling to reduce, so it may be better then. When I went to the recovery room she looked like she had done ten rounds with Mike Tyson- crying with blood all over her face- I suppose surgeons aren't concerned with cleaning them up afterwards! They kept us in overnight to be safe, so I slept on the old familiar NHS camp bed by her cot and she was really well through the night. We are home now and she is VERY blocked up and snuffly- god I really hope it's just the swelling. Watching her struggle to breathe is awful :-( I also went to her Neurology appointment while I was there, as her fits have been a little out of control lately. He has added another drug into the mix of epilepsy drugs and hopes this will work for her- so do I!!!! Suppose I will as always, just have to cross my fingers and wait.

Alder Hey....

2010-01-11T05:50:00.000-08:00

Awful visit. Took 2 hours to get there, so Elin was in a right state by the time we did. Hyperventilating and lathered in sweat. She barely had time to recover before we saw the ENT specialist who was very lovely, but shocked at the state of her breathing (it was particularly bad, I have to say, on account of the panic-stricken long car journey ). Had to go through the birth story again (never fun) and then he had a quick look at her. He said it must be very 'worrying' for us that her breathing is so bad. We pointed out its funny what you get used to. I am only aware of it now in public places when I see other people staring. Anyway, he listened to her chest and thankfully- a little positivity- says that despite sounding awful, she is actually getting a lot of air into her lungs. He is going to make another appointment for us where he will put her under a general and take a good look, probably remove her adanoids if they are enlarged. He says he has seen kids like Elin before and sometimes there's nothing you can do to help. Sometimes the brain damage is so severe that the brain simply isn't sending clear enough signals to the passageways to enable her to breathe correctly. He fears she may also suffer from sleep apnea. This is when you stop breathing in your sleep for small periods, then it wakes you up. He thinks this is why she wakes up at least twice a night. Great. Not at all worrying, then. Im sure that little nugget of information will help my insomnia. In the car on the way home, despite us trying some sedation to avoid a repeat of the journey there, Elin does not go to sleep, gets extremely stressed and starts fitting. Try going down the busy carriageways between Liverpool and wrexham in bad weather and watch your baby strapped into her car seat having fits. Do you take her out and hold her despite the heavy traffic? Or stick to safety first and leave her in her seat??? I did a bit of both, feeling sick with guilt, worry and frustration. The minute we take her out of the car at home and I am preparing to medicate her, she relaxes, like a wet rag doll and sleeps on the sofa for two hours where she still is now. Sometimes I feel like I just can't take any more and today is one of those days.I hate this, I hate it. I hate it.

ENT

2010-01-10T07:41:00.000-08:00

Taking Elin to Alder Hey tomorrow for her ENT appointment. I really hope they can come up with some solution as she just can't seem to breathe through her nose. I am convinced this is what wakes her up 2-3 times a night, plus it bothers her and it sounds awful bless her. I really wish she didn't have all these extra little problems to worry about. I think she has enough to deal with!.Not such good news on the seizure front, she has had to have her medication upped as she is seizing every five minutes and has been for couple of weeks. They are only little ones and manifest themselves in small twitches of her head and arms, but still not good and distressing to watch. We back at Alder Hey later this month to see the Neurologist, I think he may change her medicine completely, which worries me as changing medicine has it's own implications- we'll see. Feels like I live in constant fear of what the future holds, it's a hard way to live your life! On the plus side Elin seems extremely alert right now, despite the seizures and is incredibly smily. Twice this weekend I have popped out and when I have returned she has broke into a massive smile when she hears my voice. I really hope it wasn't a coincidence! I dont think it was :-)

Christmas

2009-12-30T01:35:00.000-08:00

Elin had a good few days over Christmas, particularly Christmas Eve, Day and Boxing day!! She must have known ;-) As usual, people spoiled her rotten and not only did she have some wonderful clothes but we were really touched that people considered her needs when buying toys and she got some great ones which we have already managed to play with- a favourite at the moment is the glockenspiel, which never fails to make her smile. I put the beater in her hand and help her to play too, maybe one day she will left the beater and whack the keys herself- imagine that ;-) Sadly the last few days have not been so good, the day after boxing day she had a long fit early evening and so I had to administer the rescue medicine, Medazolam, myself for the first time. It was easy actually and she relaxed out of the fit strait away then slept for two hours. Paul was pragmatic as ever and I was as emotional as ever. He says we just have to get used to it but Im not sure I ever will. I called the hospital and we didn't have to take her in this time which was good- being on the ward over Christmas would have been too depressing for words so thank heavens for small mercys!

Here we go..

2009-12-12T11:12:00.000-08:00

..Another fit today. Not as bad as last time. I waited 10 minutes as there were short breaks and luckily it subsided so I didn't have to administer the rescue med and take her to hosp. Paul was out but Caitlin was here and I didn't tell her what was happening, it would have upset her too much, but I was terrified. It's the responsibility of doing the right thing- I was just so scared I didn't know whether to give the medicine or not, thank god she stopped fitting so I didn't have to make the choice. God it's just so hard sometimes. We had just finished putting the tree up, it should have been a lovely day and instead I spent it scared and upset. I will never get over having to watch her have a seizure, it kills me. I can't get my head around what she has done to deserve this and I would swap places with her in a heartbeat if I could.

Elin turns to find a rattle...

2009-12-07T13:57:00.000-08:00

This is Elin listening to a rattle and turning to look towards where the sound is coming from. Such a tiny, tiny, thing. Newborns can do it. But Elin has only just been able to do it and I notice on the timer it takes her 42 seconds for her brain to process the sound and tell her neck and head muscles to move in that direction. What I love about this video is the fascination with the noise in Elin's face and they way her eyes are trying to follow the sound. Maybe if they keep trying, then one day they will be able to focus on the sound and we will be another step further ahead, but for the time being, this will do me ;-)

Cherish...

2009-11-30T11:57:00.000-08:00

Went to the CHERISH Christmas party yesterday (Cherish being the charity for the Wrexham Special Care Baby Unit of which I am on the committee)- Really great to see a room full of kids that were once on special care- all different ages - mad to think that all those lovely children in their party outfits were once in ICU at birth, with anxious mums and dads praying, wishing, crying and hoping their way through cot-side vigils. Every single one of those parents at the party knew exactly what it meant to be able to enjoy Christmas with their child and there was a real sense of celebration in the air from people who are grateful for every move their child makes. Some kids had spent the first 6 months of their lives on special care - I cannot imagine how hard that is- four weeks was long enough for us! Cherish is such an apt name for the charity because each child is genuinely cherished by parents who have looked over to the dark side, faced possibilities within hours of a child's birth that most mothers could not even comprehend. When you have stared the chance of your child's death in the face soon after giving birth and then battled through the doctors predictions, battled through the life support machines and the medication and the drips and the feeding lines and the SATS monitors, then find yourself months or years later at a Christmas party with your child, Cherish only really begins to explain how you feel about them ;-)

Tricky week...

2009-11-22T10:43:00.000-08:00

It's been quite a tough week or two since Elin's hospital stay. She is actually doing well, the consultant put her Epilim up to 6.0mls twice a day from 4.5mls. It seems to have done the trick in keeping the seizures mainly at bay, though she is still a little too twitchy/jerky for my liking- having said that she has been less so in the past couple of days. She is also teething, has a monster razor tooth come through at the back of her gums which Im sure can affect the seizure situation. It's me that's not doing as well- I seem to have turned into an emotional wreck! It's very hard to put what happened out of my head and I can't get rid of the sick feeling in the pitt of my stomach every time Im not with her- wondering if she is ok, if something is brewing or not etc. I frequently burst into tears and I feel nervous and panicky all the time. I suppose that's what you call stress. I wish I could just stop worrying and being so teary. But then in stronger moments I think Im not going to give into this and this monstrous condition that affects Elin and all of us. I cant let it ruin the life we have with her, which we try to keep as normal as possible.I can't be by her side 24/7. But, it's easy to say that and very hard to actually carry it out.

Interesting article.....

2009-11-18T05:57:00.000-08:00

http://www.independent.co.uk/life-style/health-and-families/features/life-and-death-decisions-with-a-disabled-child-1817674.html

A bad weekend...

2009-11-09T07:14:00.000-08:00

..This is a hard post to write because I like my blog to try and focus on the positive and stay upbeat wherever possible. But it also has to be a real blog and update everyone on Elin's progress, which took a bit of a de-tour this weekend. After months of fairly good seizure control with her epilepsy med combination, Elin had what we had been dreading and hoping would never happen- a grand mal seizure. This is a big one, and much more typical of what you think of when you imagine an epileptic fit. We prayed they would be kept at bay, but out of nowhere on Saturday she started having a seizure that she didn't come out of. I took her to hospital where they gave her a dose of medazolam and put her in HDU. At first it didn't seem to be working and just as they got a canular into her hand for a stronger, introrvenus drug, she came out of it. After an hour of sleep she was right as rain and back to her old self. They could not find a trigger for it and don't know if it will ever happen again or not. We were devestated as she had been doing so well lately and her seizures had been fine. It felt like we were being punished for believing things were improving for her. We spent the night on the ward so they could watch her and were discharged yesterday with the promise of a phone call from Elin's consultant, who was off yesterday, to discuss upping her current meds. I will also need to keep the medazolam at home to administer myself if it happens again. They call it 'rescue' medicine. Today I feel like I need to be rescued too.

Alder Hey....

2009-11-02T12:38:00.000-08:00

Alder Hey have sorted in the space of 40 minutes something we have been waiting for for weeks- Elin's eczema. No wonder they were recently voted the top children's hospital in the country. I am in awe of the place. We had to keep her bandaged all weekend after a greasing up with moisturiser and now I have to apply the cream 4-6 times daily and she has to sleep in a special bandage-type suit for a bit. It's soooo much better and the Dermatologist says it's not related to her condition, it's just bad luck that she has the eczema too. Bad luck? Too bloody right- how much bad luck can one baby girl have??? P.S Included above photo of Elin on her holidays just cos it's cute :-)

Blue Badge in all senses of the word....

2009-10-28T10:59:00.000-07:00

We have been granted a Blue Badge for Elin. I am excited about this, as it will make our life that bit easier when out and about, especially as Elin hates travelling so much. I went to the council offices today to pick it up- in the middle of a sneaky bit of half term Christmas shopping lol- spoke to the lady who was great and had sorted it out for us (kids aren't supposed to have them until they are two) and had a nice chat with her. She said Elin was gorgeous. I told her I really appreciated her help and how much easier it would make things when we are out and about with Elin. I left to continue my shopping and had a little look at my lovely helpful badge. It was all shiny and new. Good, I was thinking, we really need this it will be a big help we were lucky to get it. I turned it over and there was Elin's photograph ( a close up of her beautiful face) staring out at me with the words 'Parking card for people with disabilities' and 'Wrexham County Council' next to it. I burst into tears and cried into my scarf all the way back to the shops. You never know when it's going to hit you, but when it does you have no chance. You just have to cry, dry your eyes ...and then go and spend some money (or maybe that's just me ;-) )

A Jolly Holiday....

2009-10-27T06:02:00.000-07:00

We have been away for a couple of days and Elin was SUCH a good girl! Going anywhere can be stressful with Elin as i have previously mentioned- but going away from home is even more stressful. Before we went i had a list as long as my arm- and a sick feeling all the way there that i had forgotten something- happily i hadn't and we had an amazing time in Llandudno seaside town. The best thing by far was that Elin sat in her pram for a good 80% of the time without screaming- this meant we could walk around the town, stroll up and down the pier and even take a tram ride to the top of the great orme mountain without having to get ourselves stressed or break our backs carrying her- huurah- could this be progress??!! We have also recently noticed that when out in bright light and wind up the mountain -even though it wasn't that sunny-she kept her eyes tight shut- her brain cannot signal to her pupils to dilate properly to accomodate the light so she literally cannot open then against the bright light. Whenever we went inside her little eyes would ping open as if to say 'ahhhh thats better'. Very cute bless her .She was also full of smiles and slept on cue in her pram when we went to the hotel restaraunt for dinner and breakfast! Good girl! I was so proud of her this holiday and what a treat to have such lovely family time together.

Babies babies everywhere...

2009-10-22T13:04:00.000-07:00

Recently there are babies everywhere, pregnancies amongst friends , newborns smiling out at me from Facebook. It makes me feel weird. I love baby news, I know how precious a healthy happy baby is and Im genuinely happy for everyone. But if I really look inside and am honest, every single piece of news like this is tinged for me ever so slightly. Because I will never, ever be able to get my head around how EVERYBODY but me can fall pregnant (without 4 years of trying and horrendous, expensive IVF that is) and 9 months later go home with their baby safe and well. There is a column in the local paper written by a new dad on the joys of fatherhood. I can't even read it- once I read it and he was talking about how he watched his baby pull himself up to standing for the first time in his cot and then smile with joy at his own little achievement. It made me feel sick with jealousy. And believe me, I hate myself for that, it's not something I like about myself or I like feeling AT ALL . But it's there. I can't deny to myself it's there. It's there in photo's of other people's babies. It's there when there are babies on the telly younger than Elin doing things I can only dream of for her. It's there when I watch my friends babies develop and change at lightning speed. It's there when the other babies say 'Mum' (or say anything at all). It's there alright and it's bloody hard work to make yourself immune to it, when your heart is still broken and you're wonderig if it will ever feel fixed again.

More positive.......

2009-10-17T04:14:00.000-07:00

Just read my last post, it seems so negative- but then sometimes that's how I feel. I am especially badly affected when Elin is ill and I didn't particularly relish spending the day on children's ward last week after our GP made us go in because he thought she wasn't breathing properly (Elin never breathes properly, lol). Happily the antibiotics we got sent home with seemed to have done the trick, and we met a lovely new Indian doctor on children's ward to add to our list! He was really thorough in his examination, which was good and expressed delight when Elin batted his hand away with BOTH of her hands when he tried to look down her throat. He said it was really good, it showed she can move her arms with intent. I am just praying now that Elin doesn't break out in my chicken pox! Though if she avoids it, it will be a miracle! She looks so cute today (see above!) sometimes I can't believe there is anything wrong with her perfect little being. Bless you Mummy's baby.

;-(

2009-10-15T14:21:00.000-07:00

I feel like shite tonight. I hate Cerebral Palsy for what it does to Elin, I hate Wrexham Labor Ward for doing this to us with their lazy care and I hate God, or whoever the hell it is up there, for taking the piss out of me. I just wanted to be a Mum like everyone else, not dealing with heartbreak every single day. Sometimes I swear my heart actually hurts. Sometimes, it's just too much. But what else is there to do but to keep going??

News story...

2009-10-13T06:09:00.000-07:00

Just saw a story on the news about a woman whose son suffered fatal brain damage at birth after a lack of oxygen when two doctors and midwives refused to act on the fact that her baby was in distress during labor. DESPITE the fact that the CTG was clearly showing foetal distress, and the woman was only 32 weeks pregnant, doctors kept her in labor so long that when he was eventually born he was taken strait to intensive care (like Elin) but his brain damage was so severe that 10 days later she had to turn off his life support. My heart goes out to this lady, it was her first and much-longed for baby. She says she simply could not understand why they weren't doing anything to help. The first doctor even disputed she was in labor, suggesting she may be constipated. She should have been given a c-section hours earlier (sounds familiar). The lady has been awarded £160,000 compensation but would trade it in a heartbeat for her son's life back. This is happening ALL TOO OFTEN it makes me feel physically sick that so many women across Wales are putting their trust in labor wards full of staff who are too lazy or inexperienced to do their job properly. No one can ever imagine what it is like to give birth and not hear that cry you have been dreaming about for months (or in my case years) and to go through months and months of hellish news only to discover after an inquest that things could've been different, this was not meant for your baby- you just happened to go into labor at a time when there were a handful of staff on who didn't read your notes, didn't monitor your baby, didn't look after you. This woman will never get over that lack of care, and neither will we- though our outcome, happily, was that we at least got to bring our baby home.

Passport......

2009-10-09T03:58:00.000-07:00

I think Im going to get Elin a 'medical passport'. It's a little thing she can carry around with her, it says 'Hello, my name is Elin and I have cerebral palsy' etc etc with her likes and dislikes, then it goes on to explain her condition in non-medical jargon terms- like that she has a feeding button in her tummy etc. We were out in the car the other day and I suddenly had this morbid thought that what if we crashed, or actually, what if anything happened to me when I was out with Elin. People might not realise what was wrong with her and what if they tried to give her a drink? They would be choking her without even knowing it. Apparently you can get these passports from Cerebra. I won't even think about the fact that it's probably the only passport she will ever need ;-( I am also in the process of applying for a blue badge so we can park in disabled car parking spaces- might make life a bit easier. God, the things you have to think of......

Vocal..

2009-10-06T07:41:00.000-07:00

In our 3-monthly consultation today with Elin's doctor there was nothing much to report. Except, as we were leaving we mentioned that she is starting to babble a bit. He then told us, conspiratorially , that when we first went in he had written down 'Vocal!' in his notes and stressed it was with an exclamation mark because he was surprised to hear her making baby noises. I am so happy- could it be that there is a ray of light in her predicted world of silence?

Shopping trouble..

2009-10-04T02:04:00.001-07:00

Why doesn't anyone manufacture special seats for trolly's for disabled children? I recently saw in the Cerebra newsletter a mother had written to them asking them to design something she could take to the supermarket to put on the generic trolly seats that would support and restrain safely her daughter who was 3 and had C.P. They came up with a fantastic easily trasportable foam and velcro add-on for a trolly seat- why cant something like that be available widely for all disabled children? Elin is far too big now for the baby seats attached to the trolly's and cannot sit in the plastic fold-out toddler seats in the trolly's as she is completely unable to support herself. This means I can only ever go shopping when Paul is at home as I cant take her with me. Really frustrating! I know the supermarkets do online deliveries and thats great for us but sometimes I just want to get in the car and nip out for a few bits. I think i will e mail cerebra and suggest mass production of their trolly seats..i cant be the only one with this problem.....

Bradley....

2009-10-01T13:21:00.000-07:00

Bradley was the son of the first Mum I ever contacted on the internet after having Elin. He was born after a horrendous labor, where he got stuck in the birth canal and suffered profound brain damage, giving him massive and complex problems like Elin such as C.P . He also had a particularly nasty form of infantile epilepsy called Lennox Gastaut Syndrome as a result of the brain damage. When I contacted Suzanne, his Mum, through a forum about kids with C.P she was amazingly strong and gave great advice. She became my friend on facebook and we shared birth stories, anger at the hospitals following the shocking mis-management of our labor's, photo's of our babies etc. etc. A few months after I found Suzanne, Bradley passed away in Derian House, a children's Hospice after battling several infections and constant fits. He was three years old. Tomorrow would have been his fourth birthday and I have just read Suzanne's memorial page to him. It is, needless to say, incredibly moving and I wish this did not happen to people, I wish everyone who ever got pregnant could have their baby, just as they had dreamed . I wish a lot of stuff, but just for today, I wish I could help Suzanne in her grief over her beautiful boy, but nothing I could ever say seems appropriate. I do know I will never forget Bradley. He was the first baby I saw who was like my baby and he made me feel like I wasn't alone. God bless you, Bradley.

2009-09-30T12:56:00.000-07:00

Cerebral Palsy sucks. That is all I have to say today. Not very profound, but true.

A call to the Neuro....

2009-09-28T08:19:00.000-07:00

Neuro says the spasms Elin has been having are probably seizures. She goes extremely stiff, throws her head back and her limbs shake a little. Sounds worse than it is, but is still upsetting to watch. He doesn't want to put up her meds though cos it's not happening often enough. He said he wasn't worried about them-sSo I guess we shouldn't be. But Im still going to film one to show him at our next appointment. I want to know what kind of seizure it is, if it is a seizure. As severe CP can cause muscle spasms it's difficult to see sometimes what is caused by the C.P and what is the infantile epilepsy (which is a secondary condition to the CP). Ho-hum. In better news, Elin has been making 'babbling' noises when we mess around with her, really happy little baby noises. The first pre-cursor to speech, would usually happen at around 3/4 months. Of everything, I will never give up hope that she may say a few words one day. If I let myself believe I was never going to hear her voice I probably wouldn't get up in the morning, so I just refuse to believe it. Simples.

2009-09-27T01:33:00.000-07:00

Elin slept at her Nanny and Grampy's last night for the first time ever!! Had to take a lot of stuff around, epilepsy meds, milk pump, syringes, special mattress etc but am really glad she went, so nice for my Mum and Dad and good for us to get a night's sleep!! I was starting to worry that if anything ever happened to me and Paul and we couldn't be at home for whatever reason, then nobody else would know how to look after her overnight- manage the feeding pump etc- so it great that Mum and Dad are getting a bit of practice in! Another little niggle that was bothering me. and now one less thing to worry about. If you had told me when I was pregnant that it would be 14 months before my baby went to my Mum's for the night I wouldn't have believed it! I figured we would probably have our first night off when the baby was about 6 weeks. Ha!! I suppose it's a good job we don't have a crystal ball....

2009-09-25T07:09:00.000-07:00

Recently someone told me they thought it was great that Elin mixed with healthy, 'normal children' at her childminders etc. I completely agreed. They went on to say it was great for the other kids, because it would help them to understand disability. But then they said it would also help teach the kids how 'lucky they are'. Well, I think mixing with other kids is great for Elin's development. I certainly think its great that the other kids may grow up understanding disability more. But ...guess what..... I don't really give a shit about other kids learning to know how lucky they are by using Elin as a baseline! How am I supposed to react to that? 'Oh well, as long as my profoundly disabled daughter is helping other people's perfect kids to know how lucky they are then I guess that makes me feel better about it all'!!!! Rahhhhhh of course I realise it was not meant in this way but you would think people would have a bit more bloody sensitivity- or, as Im learning sometimes, maybe not.

Photo booth frolicks!

2009-09-24T07:05:00.000-07:00

2009-09-24T06:59:00.000-07:00

Today I am wondering if Elin's seizures have come back as she keeps having the odd jerky moment again. Neuro said to expect it and they would probably never be completely controlled but it doesn't make it any easier. As if having severe C.P wasn't bad enough, Elin is also one of the unlucky few who have infantile epilepsy too. It would break your heart, if you let it .

C.P or not C.P?

2009-09-20T13:33:00.000-07:00

Poor Elin's eczema on her arms terrible today and I wonder if that too, is part of her condition somehow? I wonder this about every little thing she has- is it because of the C.P or would she have had it anyway?? Don't see how it could be, but either way it is horrendous so a trip to the G.P's is in order methinks. As if she hasn't got enough problems! Poor baby. A tooth painfully poking through today, which makes 6. Another irony of C.P is that she cannot use her hands to help her with her teething, no biting or sucking them and definitely not holding anything to chew on ;-( so when you consider that she copes really well with teething, brave little soldier. I recently noticed a groove under her tongue where it has been running over her two bottom teeth. Apparently, because she doesn't eat anything orally, her sharp little teeth are never given the chance to 'blunt' themselves so they will need to be filed down before they make a hole in her tongue. We are on the waiting list for the hospital dentist. Yuck.

Elin on her holli-jollies!! Aug 09

2009-09-19T11:07:00.000-07:00

Elin in her wetsuit in the sea with Daddy and sister Caitlin ;-) ;-)

Who says North Wales can't be fun? ;-)

Happiness is...

2009-09-18T10:03:00.000-07:00

Walked into Childminders at lunch time and for the second day on the trot, and for the second time ever, I call Elin and she turns slowly and her eyes dart around and she slowly and purposefully smiles. Big, wide and toothy. She knows me. She knows I am back. Shes pleased! I cry all the way home.

Hospital playgroup

2009-09-17T07:22:00.000-07:00

...Found Playgroup hard today at the hospital. Elin and four beautiful boys who all had downs syndrome. Our c.p partner in crime wasn't there. Felt very isolated as the other Mum's discussed how the downs had affected their babies, I could not join in. All the babies were similar in age to Elin. I watched them pick up toys, laugh, sit up, look at things properly , gurgle, chew things. I feel jealous as I watch Elin on the mat, not focusing and swiping her limbs around and choking on her feed not understanding. Hate myself for feeling like this, it's a crap way to feel. It's defeatist. Watched as the other Mum's wondered what was wrong with Elin, not being able to put their finger on it, until one asks. So I tell her and she dosen't know how I cope, she says. It's meant kindly but it makes me feel worse. Crap, crap, crap. The therapists are jolly as ever and I want to pick Elin up and come back to the bubble of our house where Elin is just Elin and nobody pities her or see's how she is 'handling today'. So I do. I don't think hospital playgroup is for us.

With a little help from my friends..

2009-09-16T05:49:00.000-07:00

Last June the school where I teach organised a sponsored climb up Snowdon, to raise money for Elin. 17 staff completed the climb.We chose Hope House Children's Hospice, where terminally ill or extremely disabled children go for respite care, to donate the money to. The grand total raised was £2, 797 which is awesome. Tomorrow we will present the cheque to a representative from Hope House in a special assembly at my school. There is nothing more humbling than seeing people you love, people you care about, family and friends and even people you have never met in your life raising money because they have been moved by your story, and the life of Elin. I am eternally grateful to all who donated but especially to my work colleagues who organised it all of their own accord, just because they wanted to do something. It showed me that people have a greater capacity for kindness than i ever could have imagined and I wish everyone who had a child like Elin could have this amount of support, because without it Im not sure where we would be.

Farm fun...

2009-09-15T06:24:00.000-07:00

One of the many, many ironic things about having a child with C.P is that it's not just the big, obvious things that you have to deal with like the mobility and vision problems. It's the little things. Like the fact that due to excessive involuntary contorting and muscle spasms, Elin cannot actually sit in anything. This renders her car seat and buggy practically useless, meaning every necessary trip out is a stressful experience at best and at worst an I'm-never-coming-out-ever-again kind of experience. As for trips out that are not necessary, they are extremely few and far between, with us having to psyche ourselves up beforehand for the juddering and screaming from Elin, which ceases immediately once human contact (i.e cuddles!) is restored. Frustrating is not the word, we have tried everything. Anyway, at lunch I picked Elin up from the childminder, and they had been to a farm. As I gazed with awe and wonder at the bravery of my childminder (who is amazing, but more on that another time) for actually taking Elin out voluntarily, I noticed Elin had a pink smily-face sticker on her t-shirt. It was given, said the childminder, for being good in the car, and even better in the buggy at the farm. I immediately developed a little lump in my throat and puffed up with happiness, that little sticker could have been a Nobel Prize as far as I am concerned. Achievement where Elin is concerned comes in tiny steps, but when it does come, my pride is as fierce as it is overwhelming :-).

How good is this..? ;-)

2009-09-14T11:07:00.000-07:00

The Independent, 30th June 2007
By Jeremy Laurance, Health Editor

Sorrow and pity are natural responses to disability in children - but they are misplaced, researchers say.

There is no need to feel sad about youngsters with cerebral palsy because they experience life much as other children do - with all its joys and sadnesses, successes and failures.Able-bodied adults tend to view such children in terms of the struggle they face and their lost potential for a full and active life. But that is not how the children see themselves, according to researchers from Newcastle University.A study of 500 children with cerebral palsy in seven European countries has found that across a range of measures, including psychological wellbeing, self-perception and social support, their levels of satisfaction are as high as in other children.Though disadvantaged, in some cases seriously, their impairment is incorporated into their sense of themselves from birth and they embrace life and all it has to offer with the same excitement as other children.Professor Allan Colver of Newcastle University, who led the study, published in The Lancet, said it contained an important message for parents. “Parents can be upset when their child is diagnosed with cerebral palsy but they can now be reassured that most children with the condition who are capable of providing information at the age of eight to 12 have a similar quality of life to other children.”

When you're smiling....

2009-09-13T13:34:00.000-07:00

Have just read my last blog and realised although it gives our history, nowhere do I pojnt out the pure, unconditional and all consuming love we have for Elin. When she was first diagnosed , the prognosis was full of negative's - never walk, never talk, never eat orally (she is tube fed), never see properly, never understand life as we know it (the Neuro said she would never be a 'thinking person') and never stop having fits. This is not how we see Elin. We see her in terms of positives and 'can do's'. One thing I was obsessed with in the early months of her life were smiles, because she never did. We tried everything, toys, songs, games, kisses, cuddles. I thought despite everything, if I could just get her to smile it would be unlocking a form of communication and I would know she was happy at least for that moment in time. I was desperate. I saw babies less than 6 weeks old out and about who were smiling beautiful, perfect gummy smiles. It felt like a knife in my heart. Then one day, when she was 10 months old my sister brought her a squeaky chick toy. When she heard it, she smiled. Then again. And again. It changed everything for me and proved that despite the odds you can never give up. This photo is the first smile we managed to catch on camera and I will treasure it and what it means forever.

A Brief History of Our Universe......

2009-09-13T11:33:00.000-07:00

So how did I get here?

Sometimes Im not sure. It all seems so unreal. But here I am and here I'll stay so I'll fill you in on the story.

Elin was conceived after successful IVF treatment (unbelievably and almost unheard-of first time success!) because I cannot have children naturally following fallopian tube surgery when I was younger. After a completely straightforward and healthy pregnancy she was born at 6:28 a.m on the 22nd July 2008. She did not cry, the midwife turned a nice shade of ashen and my husband was screamed at to 'pull the cord' to call the emergency crash team of doctors. In a nutshell this is what happened next.............

1 month on S.C.B.U...touch and go....brain scans, testing etc etc....then eventually home with a nasal feeding tube. Home for 2 weeks then back to children's ward for 3 weeks due to excessive vomiting and may I point out, excessive screaming (which turned out to be acid reflux and not, as the trainee Health Visitor had assured us it was, colic). Cerebral Palsy given as a diagnosis but apparently 'impossible to tell' the extent of the brain damage incurred at birth. Home again, more tests then off to Alder Hey at 4 months old for a fundoplication, vagotomy, gastrostomy and pyroplasty. 3 hours in surgery and all goes well. Elin more comfortable and stops vomiting. BUT this is where a Neurologist points out that Elin is not just twisting and having muscle spasms, she is fitting. She has West Syndrome- a form of epilepsy synonymous with her severity of brain damage which he describes as H.I.E grade 3 which I learn about from google later on ( I also learn not to look up anything on the internet again.) Neurologist lays out a very poor prognosis for Elin (think as bad as it gets in terms of brain damage and you're halfway there) and we go home for the holidays with a present of strong epilepsy drugs. Merry Bloody Christmas.

The months that follow consist of Elin having up too 100 fits a day and not developing any skills as far as we can tell. There are tears, depression, disbelief, anger and Paul and I digging deep into our psyche's to find something we didn't know we had- the strength to deal with this impossible fate that has been laid at our unwelcoming door. We do this with an incredible amount of help from friends, family and work colleagues. The sort of kindness that would restore your faith in humanity and for which we are eternally grateful. Fast Forward to Summer 2009-Elin's 1st birthday and things are better. Elin is a lot better, having found finally the right cocktail of drugs to control her fits. We are a lot better. I am even back at work, part time and feeling much more like 'me'. But neither of us are in denial about the road we have embarked upon with Elin and the difficulty of the journey ahead.

Blogging Virgin ;-)

2009-09-13T11:16:00.000-07:00

Well......my first 'blog' after realising whilst I was driving home from Asda that I needed some sort of outlet for the thoughts that my poor head is crammed full of since I had Elin. I wish I had started this when she first came home from hospital, but back then I could barely look after myself and my new, freshly diagnosed, crying, twisting, vomiting poor, poor baby let alone switch on my laptop and start being coherent. Now, of course, things are better. Now, my husband and I know what we are dealing with. We know all there is to know about Cerebral Palsy and Epilepsy (but wish we didn't). More importantly we know Elin and we know that the black and white hit-you-in-the-face-with-a-sledgehammer prognosis we received from the Neurologist last year is not ALL she is. In fact, it's not even close to describing how Elin is, or what she means to us.