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

 

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! 

Kicks up the bum from the universe

Ever felt like the universe is constantly giving you little kicks up the bum in the direction you’re supposed to go? It happens to me sometimes. Sometimes it’s playful and other times it really, really hurts.

I notice I get little kicks whenever I think seriously about giving up blogging here. On two occasions now – the most recent being last week – when I’ve been on the verge of giving up this space, I get an email from a parent just like me, coming to terms with having a baby with facial palsy, thanking me for writing about my experiences. The emails are always just so lovely and the tinge of worry, yet glowing love they have for their babies, takes me hurtling back to the time I spent googling for answers with my own special boy feeding away, oblivious to the tears that dropped onto his little head.

In that moment, I know that my almost four years of blogging here is worth it and it inspires me to keep telling my stories of parenting a child with a difference. So, I begin this year with a new resolve to keep telling my stories, the big and the small, the joyous and the painful in the hope that we can all revel in our own differences and that of our children.

This year will be a momentous one here in our household as we prepare J for hopefully beginning big school next year. One of the reasons I haven’t been blogging as regularly is that a lot of my energy has been focused on being completely and utterly present with him and working on his speech, language and physical movement. At the end of last year we went through the process of gaining entry into our local Early Childhood Development Program (ECDP), which prepares kids with special needs for Prep. We had been warned that getting in is sometimes hard for kids with speech/language delay, but when we met with the staff they couldn’t be more accommodating. We started to attend playgroup there while we did all the mountains of paperwork to get in. In the end, they suggested we try to get him in under ‘physical impairment’ due to his facial palsy. Which worked and J started at his ‘new kindy’ this week.

Accessing the ECDP and its services constituted a big kick up the bum from the universe. What I found there was so much support and understanding for Jarvis and for me as his mum. Until this point, the idea that J had ‘special needs’ was something I wasn’t comfortable admitting to even myself. His differences were just him, the challenges we met along the way – the appointments, the tests, the therapy –  was just part of our journey. However, standing in a room with a group of kids, all with different needs, and their parents who were there to help them, I realised that I’d found a place where there was no ‘normal’ and I felt a sense of peace. At that moment, I knew that for four years as I struggled to learn how to be his parent and to show the world how brilliantly I was coping (cough, cough!) that I constantly compared him to other kids his age without his problems, instead of comparing him to his own potential – which although endless, just takes a little longer to shine out of him.

I can’t dwell on the fact that it took me four years to come to this realisation, but I sometimes wonder if I would have cut myself a bit more slack a bit earlier had I known it to be true. The upshot is, I know in my heart of hearts that I never could have loved my boy more if I tried and that I continue to be his advocate and his guide on this sometimes rocky road, despite my personal feelings of inadequacy.

Having said all that, I know that as a family we are up for the challenges this year brings and J is over the moon excited about his ‘new kindy’. And me? I’ll be here, blogging a bit more regularly about our journey thanks to the all the little kicks up the bum that have landed me back here in front of this screen. Where it seems like I belong, after all.

Why Santa photos and facial palsy don't mix

On Friday I had just written a post for A Little Bird about my dilemma on whether to get Santa photos taken this year.  Go over and read it, I’ll wait right here, OK?

So then Friday night we decided to take an impromptu trip to the city to see our friend’s cabaret troop Betty & the Betties perform and look at the Christmas windows and take a visit to Santa Land at Myer.

It was lovely being in the city and soaking up the festive atmosphere. Jarvis was enjoying the sights and the lights and we went up to the top level of Myer to Santa Land, as I’d heard there was a ‘Santa Train’ up there. Jarvis got quite excited about the train ride and lined up and I stood near the fence to wait for his ride. As the ride ahead of his took off, I noticed a photographer work his way along the train taking individual photos of the children onboard.

Not a big deal to most parents who probably felt pretty excited by the prospect of a festive train picture to share with the Grandparents. But for me, that uncomfortable knot nestled itself in the pit of my stomach and I sent a silent wish that the photo would be taken sensitively. Continue reading

September is Craniofacial Acceptance Month

There hasn’t been many moments in my life where I’ve felt like turning around and giving a complete stranger a piece of my mind. But it happened once. In a checkout line of all places.

It was a while ago, Jarvis was sitting up in the seat of the trolley and I was facing him. He was smiling up at me and then began smiling at the people behind me, who when I glanced back were a mother and a pre-teen aged girl. Jarvis kept smiling at them and then I heard it. Muffled and whispered but it hit me like a a tonne of bricks. The mother says to her daughter “there is something wrong with that little boys face. Have a look.” Continue reading

Farewelling the fear

I’ve been thinking alot lately about my inner fears, those tip-tapping thoughts that have kept me awake some nights during this pregnancy.

The fears that probably stop me writing about my hopes and dreams for this pregnancy and the baby boy I’ll be welcoming in around eight weeks time.

You see, last pregnancy I felt like a goddess. I was blooming, full of hope and wonder about what my body was doing and was capable of. I went to yoga weekly and got in touch with my baby from early on in the pregnancy, I read about pregnancy and birth and I felt educated and in awe of this life-changing event that was taking place.

This time, not so much. Sure, I’ve felt well for the majority of the time and at 32 weeks I don’t yet feel too massive and have been taking walks around my neighbourhood, while work and running after the boy keeps me busy.

But the fear, it’s always there. The fear, not of the birth itself – though that is sometimes there too – but of the aftermath … replaying in my head the moment that I found out that my perfect baby boy that I’d held in my arms for a few hours at that point wasn’t as perfect as I thought.

Continue reading

A week of firsts

Sometimes I wish writing was as easy as transferring your thoughts straight from your brain onto a computer via some sort of bluetooth device.

What I want to say sounds so good when I rehearse it in my mind, and then when I sit in front of the computer some days it’s hard to get anything resembling those thoughts out and onto the screen. And I do this for a living. Go figure. You’d think it gets easier with time, but sometimes it really doesn’t.

Hence, the more than a week between posts.

It’s been a big week, a great week – a real week of firsts … so forgive me as I attempt to summarise! Continue reading