Belinda Peters' son has Facial Palsy; he has a facial difference. She has learned a lot from him. For example: "I have learnt that I don't need to be a people pleaser. That I don't need to listen to people gossip about others' appearance, clothes or choices. Knowing difference means you no longer have time for those who tend to judge others based upon it. I've learnt to treasure and unearth the kind of people that I want my son to know – those who are accepting, honest and loving and who don't give a damn about what you wear or whether your house is messy." There are many more gems like these Read more about it:
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The moment is imprinted in my brain like it was yesterday – my first son, just hours old, held aloft by a paediatrician as she points out his asymmetrical face to a group of student doctors.
We were already so in awe and love with this precious, healthy, screaming bundle that we didn't think for a moment there could be something wrong.
Bust as I looked up, I saw it. His right eye remained open while his left was squeezed shut, his mouth pulled to one side as his cries echoed across the room. My husband and I looked helplessly at each other and back to our baby, as the doctor's voice faded in as she compared him to Sly Stallone and out as I struggled to comprehend what this all meant.
Our son, it turned out, was born with Facial Palsy, a little known condition caused by the absence of or damage to the 7th cranial nerve, which affects his ability to smile, blink and move his eyebrows on the right side of his face.
We were given two possible outcomes: that the paralysis was caused by birth trauma and it would right itself within four months, or that the issue was congenital and it would be here to stay. When he flashed me his first crooked smile when he was six weeks old, both happiness and fear flooded my body. I knew then that facial palsy would always be a part of our life and if he was to grow up different then so must I.
I mourned for the mother I thought I would be, lost in a sea of typical mothers with typical children, and grasped for the strength to be the mother I had to be. It took longer than I would have liked; I wasn't as kind to myself as I was to him; I listened too much to the voices that said "I can't even notice it" or "It's only cosmetic, isn't it?" while I ran my baby around to all his specialist appointments, to check his eyes, hearing, speech and have MRIs of his brain for a condition that no one understood or took seriously. Guilt, resentment and anger all settled heavily around my shoulders as I navigated my way through his early years.
But like anything hard won, now five years on, the perspective I have gained from that one little missing seventh nerve has somehow been the making of me. While I still worry about the challenges he will face and if he will find acceptance in a world obsessed with appearances, my son's facial difference has also taught me some important truths.
I have learnt that I don't need to be a people pleaser. That I don't need to listen to people gossip about others' appearance, clothes or choices. Knowing difference means you no longer have time for those who tend to judge others based upon it. I've learnt to treasure and unearth the kind of people that I want my son to know – those who are accepting, honest and loving and who don't give a damn about what you wear or whether your house is messy.
I have learnt not to judge others or myself so harshly. Knowing what it's like to walk along a path that I didn't expect has given me more empathy for the unexpected paths of others. I have learnt that a little kindness goes a long way and although it's infinitely harder to apply it to myself, I have learnt just how powerful it can be. If learning to be kind to himself is the one thing my son learns from me, my job here is done.
I have learnt that there is true beauty in difference and in turn I have learnt to embrace my flaws and the parts of my physical body that I've never liked. I've made peace with my freckled skin, my large calves and the nose that I've always felt was too big, and in doing so I model acceptance to my son, the type of acceptance that I'd like him to experience and pass on to himself.
In working through my son's diagnosis and the sense-making that was part of it, I have been blessed with the gift of connection to the facial palsy community. Last week (March 1 to 8) was the inaugural Facial Palsy Awareness Week, organised by Facial Palsy UK. People around the world wore half-makeup and half-beards and shared their personal stories to help others understand that while not life-threatening, facial palsy's impact – particularly psychological – is lifelong and shouldn't be overlooked. My social media feed was full of messages about the realities of living with facial palsy and photos of beautifully unique smiles just like my son's.
Overcome with the positivity of it all, I exclaimed to my son "Look, they smile just like you" and he looked up at me, flashing his widest smile, with all the joy funnelled into the left corner of his mouth, and said "What, like this?" and I felt it, the biggest lesson of all – unconditional love.
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