They lied, it doesn’t get easier.

You remember her being born like it was yesterday, the promises you whispered in her ear; that you’d always be there, that you’d always protect her, that’s she could be anything she wanted to be. And then all those dreams, all those hopes for her future dissolved in front of you. Her life will never be ‘normal’, it will never be easy, she’ll have to try harder, work longer, push herself further, just to try and keep up. Everything that her friends take for granted she’ll have to fight for.

The dangers that she faces never leave your mind. How does she keep going? How much more can her little body take? You wish you could take it all away, make things ‘how they were meant to be’, even for a little while.

People say, ‘it will get easier, she’s too young to know, too young to remember.’…They’re wrong, it gets harder. They haven’t witnessed the tears, the fear gripping her face as she’s thrust once again into the unknown. Her beautiful smile disguises the battle that she’s engaged in.

‘I know how hard it must be’…..you don’t, you have no idea. You dread every operation, every appointment, every general anaesthetic carries an increased risk, you pray that she stays lucky. Her peers frequently pass away, you live in constant fear…

For over a 1000 nights you’ve crept silently into her room to hook up a feeding pump that keeps her growing, healthy, alive. While other children sleep peacefully in their beds, she’s pumped full of calories, the whirring sound providing the background for her dreams. She has no reprieve, there is no day off. You never properly sleep, you’re always listening out for the beeps that could mean she’s suffocating. You’ve cradled her listless body as you’ve rushed to hospital, you know how life can change in a heartbeat.

As you stare up at the entrance, you grip her tiny hand tightly as you walk though those familiar doors. Your heart sinks, you want to scoop her up and take her home. You feel as if you are shaking, all you can hear is the white noise of movement, chatter, trolleys rolling. Everything seems to be a blur. You smile at the nurse, trying to exchange pleasantries to hide the fact that you’re falling apart inside. You have to pull yourself together, she needs you.

She disappears down the long corridor to theatre. Your mouth goes dry, the tears well up inside, you’re scared. The last time she was here she nearly slipped away. She shouldn’t have to go through this again. You question your judgement, the success rate is low, the longevity of the procedure unknown. You feel like you’re constantly gambling with her life. Is it necessary, should you have waited, should you have questioned more? Is there anything you could have done differently?! You can never stop fighting, the stakes are too high.

You blindly pace the corridors, clutching a tea that you don’t really want. What seems like an eternity passes….

Eventually her eyes open, she’s confused, in pain, the crying reverberates around the ward. You stroke her hair, kissing her forehead softly. You hold her tight, trying to reassure her as she looks in the mirror… she doesn’t recognise the bruises, she doesn’t understand the scars. She’ll heal you’re told…..you won’t.

You look deep into her beautiful eyes and promise that you’ll always be there to help put the pieces back together, that she’ll never have to be alone, that you love her more than anything. Then you catch a glimmer of a cheeky smile…

You realise that you were never holding her together, she was always holding you.

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