Born At 25 Weeks Back When Only A Handful Of Hospitals In The Uk Had Incubators. I Know I'm Lucky I Don't Need Reminding...I've written something in this box a few times now. I don't really know what to write.
I'll start with the facts and go from there I suppose.
As my title says I was born at 25 weeks when only a handful of UK hospitals had incubators - 1990. I weighed just under 2lbs. I was immediately blessed by the hospital clergy (definitely a 'just in case' moment) and my first photo was taken when I was minutes old. I still have it but I've only seen it twice. It haunts me. I didn't have enough skin or muscle so my organs are visible, my eyes were still glued shut, I had no eye brows or nipples and my hands and feet remained curled like the foetus I suppose I still was. I wasn't supposed to live past two hours.When I did I was the lucky one chosen to use the first neo-natal incubator in my city. But my doctors had to hand make the equipment they fed and treated me with, my mum didn't hold me until I was weeks old, and the room I lived in for the first 4 months of life was so sterile my grandparents couldn't visit.
According to my medical records I then lived through what I usually describe as 'everything'. Some sort of lung failure, liver (think its 'renal') failure, bradycardia, countless intestinal failures, pneumonia, and then when someone feeding me accidentally put my feeding tube into my lungs not my stomach, at least one though maybe two brain haemorrhages.
I don't blame them. The space between my breathing and feeding tubes was nigh on invisible and there wasn't anything other than eye sight and practice to tell anyone what they were doing. The people willing to care for me were brave people. You can still legally terminate a pregnancy at 24 weeks with evidence that the pregnancy will kill both mother and baby but that's a whole other story...
At around 3 to 4 months old I went home weighing just over 4 lbs. (It's not something my mum will easily talk about so I haven't checked this one). I wore a doll's dress to my christening and spent two years 'catching up'.
My mum had been told she couldn't have any more children so when my brother appeared when I was just over 8 months old born at 27 weeks it was a surprise to all. Relatively speaking he had no problems, weighing in at just over 3 lbs he was a fatty and a fighter.
But he became my legs. Before he could talk I was bossing him around. He'd steal me biscuits, get my blanket, wake mum up if I needed her in the night (we had monitors but two cries were always better than one!) I later taught him to read, he'd hold me up when I wanted to sit up, he taught me to kick a ball so I taught him to tie his laces. We had our own language because I'd translate his baby talk into proper paragraphs when I was 9 months old. It is a bit freaky. People would stop and peer into the pram to watch.
I was diagnosed at around 18 months old. I have cerebral palsy, spastic diplegia. C.P. in my legs that affects walking, balance, co ordination and any other leggy activities. (Most things to some degree really). My parents were horrified at the idea of sending me to the Petto institute; an institute hundreds of miles away in another country that would 'hide me away' in a boarding school type set up from birth. Nowadays its a freer, more liberal place but back then my parents rejected the idea immediately. My dad had signed documents saying they could put needles through my skull (they'd ran out of room everywhere else), whilst my mum's life was being saved. It pretty much set the pace. So I ended up doing 6 hours of physio daily until I was 4 years old, then 4 hours until I was 6, two hours until puberty then 1 hour until adulthood. My mum quit her job and studying, my dad adapted the house and we lived on the £62 a week he got working a night/ weekend job whilst putting himself through university.
But at 3 years old I defied every expectation and I took my first steps. From then on I was always going to be 'normal'. My dad had me skiing by the age of 6!
When I was 7 I walked unaided for the first time. I went to a small school full of doctors children from the nearby medical school, so I was treasured and learnt 4 languages without realising. It turns out my IQ was 138.
I went up to secondary school (mainstream) at 11. My life from 11 to 16 was horrendous. I was bullied to say the least. I was kicked down stairs multiple times, nicknamed 'the freak that can'r walk' or just 'freak' for short, I didn't use the playground or the toilets for at least 3 years (I'd not drink anything and hold on until I got home), I was punched and kicked so people could watch me fall (funny apparently...) and I was set alight 3 time so people could watch me run for help. When my dad found out after 4 years we sued the school and won, though the senior teachers responsible for my care were never disciplined and money was never discussed. Collecting the evidence made police officers cry, and my personal tutor was pushed out of her job after fighting my corner by writing to the governors instead of letting the school which had failed me deal with the whole thing internally. Yet I still came out with 14 GCSEs, 4 A-levels, I did my entrance exam to OxBridge at 14 years old and passed. I'd also started my own drama company at 12 years old and worked on a TV show at 15 years old and then in the local news room through my A-Levels (16-18 years old/ exams).
You couldn't pay me a million pounds to go back to school. I'll probably always be bitter. And on my last day I found myself crying. Not with sadness at leaving like my few friends or happiness at the end of the bullying but for all the things that such extreme bullying had robbed me of. My first dance, first boyfriend, and the great cake that came with my few school dinners.
I was lucky at least to have my first kiss at my drama club, a few good friends who stuck by me, a teacher who took me to the final prom (and caused a stir!) and a family who took me around the world on school holidays. I could use an airport like a bus stop by the time I was 15 and could speak to people on 5 different continents all because of my parents random decisions to take us to places like India on the cheapest flights possible.
To everyone out there being bullied for their C.P. There is always a silver lining if you look at your life as a whole. It might only be that you know you've overcome more than what the bullies will in their whole lives, or the fact you get longer breaks at school because you get tired easily, the fact that you can have coffee in the teacher's lounge, or that you cherish your weekends and fill them with everything you love. The bad stuff ends eventually. Just hold on, keep smiling and don't do what I did; talk to someone!
I left my home town as soon as I could and went to university 100 miles away. Close enough my family could get to me when the need arose and far enough I could be completely independent. I didn't have many problems, I just had to approach life with more care. Things like I'd good food shopping with friends to share the load, have a gym buddy who knew and/or came to physio occasionally with me and maybe not drink so much as other uni students! It was the best time of my life so far. The yin to the crap yang that high school had been. I left with a double honours and a million life skills I would never have learnt staying at home. My parents, worried though they were think it was the best thing I ever did. I agree.
Though I'm now jobless due to the current economical climate my CV is pretty impressive and I hope life will throw me a few more chances. I've just had high risk knee surgery due to dislocating 7 times. But that's (yet again!) a whole other story...
The last thing I would like to mention is that I have a boyfriend and we hope to go travelling at the end of the year. To all those wondering, it took a while and I've only kissed a few other frogs but we have a completely healthy relationship. To all those teens worrying I will be frank... Your future love/ sex lives won't be average or easy. Don't rush it or worry too much, you have a little more to concern yourself over than most people. And no matter what kind of C.P you have sex is possible and even enjoyable (I've checked this with other C.P 'sufferers' in many an embarrassing conversation) . WITH THE RIGHT PERSON AND AT THE RIGHT TIME. I learnt the hard way that those two cliches are more important for me ad other C.P's than 'Miss Average'. Anything you want to ask I'll be as honest and open as I can. Love and the sex that eventually comes with it is a scary thing and people don't often offer the advice we'd probably all benefit from.
I know I will always be stared at for not quite walking right, laughed at for my inability to catch, in awe of anyone who can dance or wear heels, hate the fact I can't climb a ladder and stand on anything except solid ground (bloody boats!) and be freaked out by 'those positions' in girly magazines but I'm learning to live with it. Taking it a day at a time like everyone else on the planet.