Facial Palsy Awareness Week: what facial palsy has taught me

 

When my beautiful boy Jarvis entered my world almost five-and-a-half years ago so did facial palsy. I didn’t know what it was then, but finding out my child was born with the condition shook my world and I haven’t quite been the same since. Not really in a bad way, just that my perspective has forever been altered by that one little missing seventh facial nerve. In Jarvis’s case, his facial palsy was congenital, meaning that the seventh nerve on his right side never formed properly, leaving the complete right side of his face without movement when he smiles, blinks or raises his eyebrows.

So what has parenting a child with facial palsy taught me?

1. I have no time for gossip based on appearance

I like to think I’ve always been an open and accepting person, but it wasn’t until I had Jarvis that I realised how much talk can revolve around people’s appearance – particularly those who look or dress differently. I really don’t have time for people that make it a habit to comment on other people’s appearance or features, which is very liberating really. When I’ve found myself stuck in these conversations I make it a priority to move the conversation away from judgemental comments, or question the person on their prejudices. Most people are unthinking, rather than nasty – but it still doesn’t make it right.

2. The fact that you ‘didn’t even notice it’ doesn’t mean it doesn’t exist

Since Jarvis was born, I’ve been in lots of conversations when I’ve been honest about Jarvis’s facial palsy and have been met with ‘but I can’t even notice it’ or ‘but it’s only cosmetic, isn’t it?’. These comments made me feel resentful, alone and misunderstood as here I was running 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. While not life threatening, congenital facial palsy is lifelong and it’s impact – particularly psychological – shouldn’t be overlooked.

3. Difference really is beautiful

My son is beautiful not despite of his difference, he just is. Since knowing his beauty inside and out, I recognise the true beauty in difference. I am kinder about the things about myself I’ve always loathed and I’m drawn to those people who speak out about difference and work towards a world that isn’t so quick to judge based on appearance.

4. Honesty is the best policy

As Jarvis has gotten older we’ve been really open with him about what facial palsy is and what it means. We want him to be proud of his unique smile and not feel like he has to hide it away. We want him to feel confident to answer those who question or taunt him because of it. To do that, I’ve had to really own all my feelings and fears about what facial palsy will mean for him in the future and be as positive and upbeat as I can, all the while acknowledging any negative feelings he has about it as he grows.

5. Be kind, be kind, be kind

Most of all facial palsy has taught me that there is true power in being kind to whoever you meet, not judging based on appearance and acknowledging that you know nothing about the path that a stranger is walking. Kindness is often underrated but so important. I’d like to think that knowing facial palsy has made me kinder and more open to differences of all kinds.

Today marks the start of Facial Palsy Awareness Week – an initiative of Facial Palsy UK – a charity that supports people with facial paralysis of all kinds, including Bells Palsy, Moebius Syndrome and facial paralysis due to injury or surgery. As Australia doesn’t have a dedicated Facial Palsy charity or support group of its own, our family has decided to join in the week with the hope of raising awareness of Facial Palsy in the wider community.

My husband is joining in the #facemyday challenge and has shaved off half his beard for the week and I’ll be blogging and sharing on social media as the week progresses. I’d love you to join in by sharing this post or anything that resonates with you.

Adam half beard

 

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7 thoughts on “Facial Palsy Awareness Week: what facial palsy has taught me

  1. What beautiful lessons to have learned from the first 5.5 years! This is a week to teach and educate but also to celebrate J and his extra special smile! X

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  2. Thank You Bel for your post, loving families like yours are raising awareness and with awareness comes hopefully a window for kindness and understanding which is all that is needed, I hope you can get a support group started in Australia.

    Best wishes to your gorgeous family!

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    • HI Bel,

      I stumbled across your page when looking through our Awareness week bits and bobs. I am a volunteer for Facial Palsy UK.

      I got my facial palsy at the age of 22. I help set up and run the Bristol support group. I wanted to write to you because I love Australia and have been over many times. I do hope to visit again one day.

      Where about do you guys live?

      All the best
      Beth

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  3. Hi Belinda, my younger son was also born with facial palsy. He will be six months in couple of weeks and so far it has been a very frustrating journey. Thank you very much for your article. It helps to read what other mum feels and to know that I am not alone. Petra (UK)

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  4. Beautiful lessons you are have also helped others learn B. Keep being inspiring!

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  5. Thank you for sharing. My little girl soon to be one was born with a lower lip palsy. She’s got a darling crooked smile like your son. We live in USA. I am so grateful for your positivity. Thanks. Julie

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  6. My baby boy who just turned 2 was also born with a facial paralysis, I discovered your blog in the first week of realising that something had not gone right with him and it has helped my understanding and healing and acceptance. he is the most amazing feisty little man, and I hope more than anything that I will be able to prepare him for the journey ahead

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