Living with Cerebral Palsy 🍋🍋

Thursday, 29 September 2011

Helpless feelings are hopeless..

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

Tuesday, 27 September 2011

Facebook friends?

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

Sunday, 18 September 2011

Life is like a box of chocolates....

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

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

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

Friday, 9 September 2011

What a week!

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