If you read Ruth's blog regularly, you will know that life in July 2008 as we knew it changed forever and would never be the same. To say I was laid back about Ruth's pregnancy is probably a bit of an understatement. I just refused to believe, once those first few tentative weeks had passed, that anything would go wrong. So when it became clear that things had actually gone very, very wrong following Elin's birth I was crushed in a way I still can't describe. Unlike Ruth, who worried for Britain, I had never allowed myself to imagine an outcome of our baby's birth that was anything other than happy. So the shock was immeasurable really. Devastation doesn't quite cover it. I was broken.
As the days and weeks rolled by, and a list of diagnosis' for Elin emerged, it was difficult to see beyond the darkness. I remember an overpowering sense of anger that I carried around with me. It stayed with me for months and months. Anger and frustration, that this awful brain injury had happened to Elin in the moment of her birth, the moment her future should have been a wide open blank canvas and instead became instantly mapped out forevermore. I can see now that I should have pushed to get some counselling (I know Ruth has blogged about this) but at the time I know I would have refused. It was a classic case of male-buriel-of-head-in-sand-and-get-on-with-it syndrome. I think it comes more naturally sometimes to Mums, to get involved in social media support groups, to talk to friends, to meet other families and let out emotion. I dealt with what had happened by basically retreating into a shell and sometimes, even almost nine years on, I find it difficult to want to emerge. My bubble with Elin feels safe, I don't have to face anything in our new-normal. When it's just us together playing and laughing at home, the blinkered isolation almost brings a strange kind of relief. It's 'real life' that can feel exhausting.
This where I have to pay homage to Ruth and the way our relationship works. Her strength has, from day one, astounded me...but I know she would say the same about me. We buoy each other up. When she is down, I make her laugh. When I am down, she talks me round with her stoicism and her almost relentless optimistic outlook. Anyone thinking that a 'Mum making lemonade' (when life has given her lemons) is a gimmick or just a nice blog title does not know Ruth. She really does strive to be that positive. So together, we are a team. The 'Elin's Parents' team; and luckily for us it's a team that works really, really well because neither of us would manage without the other and neither of us would want to.
So back to Elin and being her Daddy. It's been hard over the years, obviously. Until very recently I was working full time. I keenly felt each appointment I missed, each school meeting, each therapy session. I hated watching Ruth navigate the emotion of all these things by herself, but I was having to hold down a job. That on top of the constant worry, sleepless nights (Elin, as you're probably aware has never been fan of sleeping!) and hospital admissions made for a pretty stressful few years. It was really hard to not let it all get to me at times. But like a million other special needs Dads every day, there was little choice.
I can't pinpoint the time that things began to get easier. As the years passed, Elin became a little more stable slowly but surely. interesting that the things that seemed most bleak about our situation in the cold light of diagnosis when she was a baby, gradually became the things I love and cherish the most about parenting Elin. She will always, always be my baby. I will always need to protect her, she will always need me. Elin's world is a very small one. The centre of that world are Ruth and myself. That will never change. The job of being Elin's Daddy will never be over, I will never need to resign or hand the reigns to someone else. She will never leave home. There is a consistency, when things never change with your child, that is almost comforting. Elin will always be Elin, just as she is, no more, no less. Don't get me wrong. I can't say I wouldn't change her- of course I would. I would give her the life she was entitled to in a heartbeat. I would give Ruth the opportunity to know life as an ordinary Mummy, Elin the opportunity to live the life that was waiting for her that day, so rich with possibility and unknown adventure, the very basics of what any newborn baby deserves. But I can't do that. So then I look for the positives and I hang onto to them.
There are so, so many positives. The alternative of her existence, the other alternative I mean- that she didn't make it in those days in ICU after her birth- is unthinkable. So ultimately, that is how I deal with each day and have done for the past nine years. We are so lucky to have her, it is a miracle she is still here. I am more than lucky to be able to call myself her Daddy. Proud is not the word. Her smile can knock the wind out of me- if you've met Elin you know what I mean. She is the single most amazing person I have met. Her spirit, which is tangibly joyful, asks for no pity. Neither do I. What Elin has taught us about life is immeasurable, she has turned my perspective about what is important in life upside down. She has nothing, material objects are meaningless to her. She has no voice (She has never, and will never say a single solitary word to me. I will never hear her call me 'Daddy'. But I am her voice and I will use every last breath to make sure her life is the very best that it can be), no mobility, no swallow, no understanding of the world as we know it. Yet she smiles, she laughs .. sometimes all day long. She takes pleasure in the simplest of things- a familiar song, her big sister's voice, a cuddle, raspberries blown on her tummy. She is the happiest soul alive and she knows only love. She will only ever know love. Her life does not need sympathy, her life, to her, is wonderful and so is she. I can lose hours at a time in her company and never feel that more than a minute has passed.
So I see myself as one of the lucky ones. My girl is a miracle, the joy she brings to everyone around her is unreal. It is an absolute privilege for me to say that I am Elin's Daddy. On Sunday, she will not bring me my breakfast, or excitedly run up to me with a home made card. She will not have chosen a present or proudly bought it with her own pocket money. She will not throw her arms around me and wish me Happy Father's Day, she has no concept of what it is. But she does know Daddy, that Daddy is me, that Daddy is safety and as she grins up at me on hearing my voice, with her lovely, funny, toothy smile, that just about feels like the best gift I could ever receive.
Who wants a 'World's Best Dad' mug, anyway?
You and me against the world, kid.
Paul x
