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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My boy with the crooked smile – Part II

It’s hard to believe my beautiful J Boy is five today. But here he is, all long limbed and boisterous, about to head off to school next year. I’ve learnt that’s it inevitable that I get a bit emotional and reflective around this time of year, as it also marks the anniversary of my birth as a mother.

This first born boy of mine has taught me so much – lessons too many to list. I’ve been thinking about my boy with the crooked smile post a lot lately and thinking it was time for an update. Reading it still makes me cry as I remember the raw emotion of what I felt then, and all the hundreds of comments from around the world that helped me feel less alone, but my feelings and emotions have stretched and molded with time.

Lately, J has become aware of his different smile. I talk to him about being different and that everyone is different in their own way. I tell him he has facial palsy and that his smile makes him unique and special. Usually he wouldn’t say much during these chats, but one night when we were talking about how special his smile was he piped up and said ‘not anymore’ and he was smiling a closed-lip straight smile and pulling up the corner of the right-side of his lip to make it even straighter. I felt that pang in my heart, the one I felt back then.

Keen not to overreact, I told him that I love his smile but I understand that he also just wants to be like everyone else too. All the while worrying that someone had made him feel self-conscious about his smile, or that I’ve talked about it too much and given him a complex. He doesn’t give anything away, but I realise that it’s inevitable that he’ll try and perfect a more symmetrical smile and that just like anyone, he’ll often hate the thing that makes him different. The thing that I most love about him.

As much as the past five years have had their difficulties, that I’ve sat in waiting rooms I never imagined sitting, doing therapy I never knew existed and googled names of conditions I had never heard of, there’s not much I would change.

My boy with the crooked smile has taught me to look past the physical, to persist when I would normally give up, to feel the true joy and heartbreak of unconditional love and the honour of being gifted such a life to guide. Our love is one of fierce protectiveness – and just as I would go into battle for him, I know he’d do the same for me. We’ve each made each other stronger just by being and that’s a pretty hard bond to break.

I wrote then that I knew we’d be okay, my boy with the crooked smile and me. I felt it then, even when I was not okay, when I worried so much about how he’d fit in, if he’d grow confident in his skin and if he’d find love and support from his peers. This year I’ve watched him blossom and form strong friendships, develop his own interests and a love of learning, show tenacity in therapy and now I really believe he will be okay. And I’m okay with letting him go as I watch him take that big step into school, even though it scares me half to death some days.

I’m scared that the world will make him want to change his smile, the smile we all adore, the joy that erupts from just one corner of his mouth. But something tells me deep in my heart that he will change the world with that smile, just like he’s changed mine.

Happy Birthday J Boy! xx

Photograph: Alicia Summer Photography

A conversation on being different

what's wrong with being differentAs Jarvis gets older, I look for ways to inject references to being different into our conversations. He doesn’t know he’s different yet, or if he does he hasn’t mentioned it to me. However, I’m adamant that I don’t want the first mention of his smile being different coming from a kid in the playground who is either innocently inquiring about it or, even worse, teasing him about it. I tell him that he has facial palsy, and that this gives him a unique smile and that being different is a good thing. As he also has a motor speech disorder, he hasn’t given me any indication that he understands this but I think if I repeat it often enough, along with a message of total acceptance and love, that he will come to accept and own it and hopefully be proud of who he is.

However, in navigating this space of difference for the last four-and-a-half years, and trying to form our family plan of attack, I started to think that talking about difference is important for every child and parent, even those not living with a difference. I can attempt to arm my son with ways to respond, to help him build his self worth and inner confidence, but my fear is that he’ll get into the big wide world of school and find a place where being visibly different is something that isn’t received as well as I’ve been telling him.

So, how can we make being different more acceptable? I truly believe it starts with us!

Be truly yourself

To arm our children with the strength to be themselves, however that is for them, is to gather the strength to be our own true selves. This is the biggest lesson I’ve learnt through parenting Jarvis – my words have to match my actions and by accepting myself unconditionally with all my flaws, I’m showing him how to do it too. In all areas of parenting, our words mean nothing if we’re not living by them, so I try and accept myself for who I am and I aim to live my life to the best of my ability. We can’t control the world we live in and what people will say about us, but we can control what we say about ourselves and I choose to change my negative self-talk into positive (or at least neutral!). The best advice I’ve heard on this is to start treating yourself as tenderly as you would your child or a good friend, and watch how your self-talk changes.

Be open and shameless

I try and be as open as I can about things both here on my blog and in real life. Again, hopefully I’m modelling a way for my boys to be open with me if they’re having difficulties in life. I want them to know that life isn’t always perfect, but within imperfection are incredible lessons to move you forward towards a happier time.

Talk about differences in a positive way

I’ve become hyper aware of how people talk about anything that’s different (particularly appearance-wise) since Jarvis was born, and it’s truly shocked me how often people comment about differences in other people – be that in the way they dress, act, or their beliefs. I know most of the time this is only to make conversation, but often times it sounds really ugly. ‘That old adage of if you can’t say something positive, don’t say anything at all’ still applies! We are all different, which is something that should be celebrated rather than condemned.

Talk about feelings

I come from a long line of feeling bottlers, so talking about feelings is not something that comes naturally to me and something I really have to work on. So, instead of bottling all my feelings up like I once did I try and name them and then deal with them accordingly. I tell my kids if I’m feeling a bit sad or frustrated and angry and why I’m feeling that way and encourage them to do the same. Feelings don’t have to be big scary things we feel we have no control over (which is how I once felt). My friend Kate bought the boys Tracey Moroney‘s ‘When I’m Feeling’ box set of books and they’re just terrific. Talking about that it’s OK to feel a certain way is a great way to build resilience and hopefully give them a way to communicate difficult feelings, rather than bottling them up, as they grow.

Do what you can to change the culture

While it’s true we can’t control the world we live in, we can do our little bit to change it. There’s always a lot of hand-wringing about bullying in the press, but then we have magazines that pinpoint people’s flaws for entertainment and endless dissecting of people’s choices and actions. So, I do my little bit by saying no to negative, sexist and trashy media. I say no to products that I feel are being advertised in a way that’s sexist, demeaning or just plain homogenised. I say no to unnecessary gender-stereotyping of children. I say yes to letting my sons be themselves. I say yes to supporting each other rather than cutting each other down. I say yes to more diversity in our world. I say yes to more music, more crazy dancing and more joy. I want to model that for my children. I want to tell them that there’s no one way to be successful. I want my beautiful eldest child to accept himself, crooked smile and all and have the world do the same. Oh, if the world could do the same.

Please share if you agree with me and add your thoughts below in the comments!