More sweet, less bitter...

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

Ouch!

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!!

Clever Elin!

Hard Times

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

When it hits it hits you hard...

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

Elin has started school!

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