Yikes!

Yikes last post was a little depressing! Really wish I updated this thing more often but good to read a post from so long ago and be able to look back and realise what I had feared didn't happen in fact, and instead we had the best summer hold ever! Elin has had an amazing time, going on holiday, visiting friends, attending a wedding, sitting in the garden (when the weather allowed) watching the Olympics (or was that just Mum and Dad??)generally being calm and relaxed and *deep breath* only having ONE seizure and NO hospital stays! Massive improvements on last year then, and that's all we can ask! So at the moment we are very happy Drake's. It's just.....(yeah you knew it was coming).....as Carrie Bradshaw would say.."I couldn't help but wonder"... ....whether certain people in my life treat Elin differently to how they might have done if she was able-bodied, if she was 'ordinary'? Don't get me wrong. We are incredibly lucky. 99% of our friends and family lavish attention on her and seem as besotted with her as we are. Obviously, things are different because they have to be. My friends and family cannot delight in the latest funny thing Elin said, they cannot take her to the park, or dance with her or do a jigsaw or interact in any 'usual' way, really. But like us, they chose to ignore this fact and they treat Elin as Elin. They love her for what she is..herself. This 99% will never know how much their attention means to me. BUT there is a tiny minority and they think that because Elin is Elin that they don't have to try as hard. That they can go from one week to another without seeing her, without calling. Are you telling me if she was an 'ordinary' four year old girl,(as oposed to extraordinary, which she is) that they would not call to hear her voice? They would not be talking to her down the phone? Would not be coming round for a hug, to play with her, to ask her what she is doing in school, what she's been up to? I know none of that can be done. I know it's shit. How do you think I feel? How many things do you think I want to do with Elin that I can't? But how is it ever ok to give in, how is it ok to stay away, to not bother? You will tell yourself it doesn't matter because Elin doesn't know any different. I disagree with that anyway, but even so. I know. I know the difference between carrying on and giving in. I know which of my friends and family carried on and I know who's given in. And I won't ever forget it either. But ultimately, if you cut yourself off from Elin there's only one person missing out. And it's not Elin.

The Abyss

So a long time since I updated my blog once again! I guess the positive is that when things are going well with Elin I don't feel the need to blog as much, so you can divulge from this that things have been going pretty well for our little Princess lately. For a while now she has only had sporadic seizures, has been doing very well in school (still struggling to sit in anything mind you!) and has generally been a smily, happy superstar. Just lately we had a scare, two seizures in two days. This in itself is not scary, we have seen it too many times for it to be scary. What scares me is the constant worry that it might signal something, like a spiral downwards for her..like last Summer/Autumn. That we might have to go back to bouncing in and out of hospital and wondering if things are taking a dreaded turn for the worst. After months of inactivity on that front you get a little complacent. You forget the constant gnawing feeling in the pit of your stomach and what it's like to live off your nerves. You forget what it's like for certain songs on the radio to reduce you to a heap, to jump a mile every time a phone rings when Elin is not with you. You forget the fear, the fear that this time things will not work out ok. You start to forget it all. Then she has two seizures and you're back there again. What do they mean? Will she have another one tomorrow? And the day after? Or are they one off's? What if she has outgrown her medication, can it be sorted this time/ How quickly? Can we plan anything, can we go on holiday, will she be ok? That's all it takes. Two little seizures remind you of how quickly things can change with Elin. That's what's scary. And hard. Luckily this time, it seems whatever was troubling her at the weekend has passed. I hope it has passed for another few months,I think we are due a nice family Summer break after last year. Life with Elin is sometimes an exercise in holding your nerve. Don't panic! Pray the status quo is maintained. The status quo being ordinary life, as ordinary as it can be, with no hospital dashes, no seizure and no illness to wreak havoc with my nervous system. That's all we need! The status quo of course in itself is not easy. There are still moments of finding yourself in a heap, still heart stopping ringtones, still nervous tummy's and still a great deal of fear, sadness and despair. But it's manageable. It's a manageable level of upset and sadness and hopelessness, because the fact is when Elin smiles at me none of that really matters. The times that are unmanageable, the times I feel like my ability to cope is ebbing away are when the smile does not come, when she is poorly, when she is sad. Not only unmanageable, but unbearable. For now we have avoided the abyss of fear, Elin is right as rain again. Let's hope we don't have to fall into it anytime soon. Let's pray for the status quo.

That Dream...

Had That Dream. Parents of profoundly disabled kids will know which dream right now, before I even describe it. Yup- the one where something amazing happens. The one where your child speaks, or performs their own miracle by getting up and walking. I barely have these dreams. I can count them on one hand in over three years. My friends and family do though. They are always dreaming Elin can speak, or walk. I have often wondered why I, as a person used to vivid dreaming, never encounters these sorts of dreams myself. I suppose the answer must be that me brain is offering up a sort of self-protection instinct. My sub-conscious is saving me from something I simply cannot think about, even in my sleep. Well done brain, that is rather clever of you. However sometimes, very very occasionally my brain slips up, and a dream get's through. And it's wonderful and amazing and miraculous, but it stops as soon as I open my eyes and I am left feeling...I don't know......disgruntled..... for days.
I had one such dream the other night, it was a 'talking' dream this time. She spoke to me, I heard her voice. Even in my dream I knew this was amazing 'Paul! She spoke!!' I screamed in my dream, overwhelmed with it all. But do you know what was the strongest and most overriding emotion? The relief my dream-persona felt. It washed over me, literally. Yes! She can speak. This opens a door, this changes everything. The dream-me could tell, even in a split second, the enormity of the situation. But then I have to wake up and of course that is the hardest part. I find myself telling people about my funny dream. I hear myself saying cheerily "It was so nice to hear her voice, even if it was just a dream" before I realise how desperately sad that actually is, how sad that makes me feel. Elin is nearly 4 years old and the only time I have heard, or am ever likely to hear, her voice is in a dream. So as wonderful as the 5 minutes of dream was, I hope my brain remembers that I would really rather not have dreams like that. Because the truth is I can't handle them. Just ask my sub-conscious, she knows.

My first, my last, my everything.

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?

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....

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..

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......