With Kasper’s third birthday rapidly approaching, I can’t help but look back over the last three years and everything that has happened. I got thinking about what it means to not only be a mother but a mother to a rare child and, in fact, what mothering means to me.
To mother: verb
To mother is to find yourself unable to think or speak during a medical emergency. Neither able to think nor form words as your body experiences a level of fear you have never felt before.
It’s to hear strange unfamiliar words uttered by doctors that make no sense to you. All you know is that whatever they mean will change the course of your family’s life forever.
It’s to sit at the dining table with a list of hundreds of names of speech therapists before you and call them one after another for hours on end until one relents and agrees to take your child.
It’s to hold your child and soothe them through seizures, night terrors, fevers and sickness.
It’s to fear other mums’ stares, questions and faces, constantly worrying what might be said, asked or joked about. It’s worrying that you might stumble over your words or break down in front of a total stranger. Yet, you don’t.
It’s to stare at the ceiling after the tenth wake up that night and finally understand why sleep deprivation is used as a method of torture.
But it’s not just that. It’s so so much more.
To mother is to dive into an ocean of emotion, going deeper and deeper discovering new trenches, caverns and endless space. When you think you’ve felt it all, discovered every part, you realise there’s more and more and more.
It’s to meet your newborn and feel something deep emit from within that says I know you and I’ve known you my whole life.
It’s to look at your child sleeping in your arms or on the monitor and to feel a sense of peace.
It’s to go on holiday and not care about what you do or where you go as long as your child is happy.
It’s to wish you could can your child’s laughter and listen to it on repeat.
Finally, to mother is to love. Deep down, sometimes unseen, in the trenches of that ocean is the beating, pulsing, radiating emotion called love. Its light shines through even in the darkest parts touching everything.
It translates the silent sound of fear to the paramedics.
It reflects from your eyes as you look from the doctor in disbelief to your innocent child playing beside you.
It is deep in the groove your pen created scoring line after line through therapists’ names.
It vibrates through your skin as you hold your child close, travelling backwards and forwards between you.
It radiates from you as you proudly tell the curious mum in the playground that your child has a rare disease.
It whispers in the darkness when unbroken sleep feels like a distant memory.
It echoes through the ocean, never far behind the seemingly louder and overpowering negative emotions.
It pumps through your veins as you marvel at the new life you created with your body.
It crackles through the monitor silently while you watch your child sleep.
It shines from every holiday photo, even the ones with closed eyes chopped off heads.
It fizzes off your child’s laughter and into your heart.
To mother is to feel love flow through every moment. It is the thread that runs through the rich and complex tapestry of motherhood. At the core of everything that we are, feel and do, is love.
