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

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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! 

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

The day my big boy turned 3

My first born baby turned three today. I’m sitting here feeling so full … full of cake most certainly, but my heart feels even fuller than that.

All week I’d been stressing. About work, about the fact I hadn’t bought all his present yet, attempting to make cupcakes to take to kindy before realising I had no eggs, that I never seem to have enough time. The critical voice was kicking into over drive. Bad mum, bad friend, bad worker. Tsk, Tsk!

But as I sit here, all that seems so meaningless. My boy got his presents, the cupcakes got made, my work got done, we spent Saturday night making him a rocket cake. The lead up wasn’t perfect, things had to be cast aside, stripped back until only the important parts remained. 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

Adventures in speech therapy #3: The breakthrough

Last Saturday was speech therapy time again. We decided to go back to fortnightly visits, after having a four week break encompassing Easter and Hugo’s arrival.

The lesson two weeks’ ago was excruciating. Our speech therapist had alot of great activities lined up for Jarvis, but it was almost too much excitement for him as he attempted to flit between the toys and games, all the while keeping his mouth firmly shut. I was cradling our one week old boy and began to feel slightly panicky as I started to wonder how we would make any more progress with our strong-willed 2 1/2 year old. Continue reading

Adventures in speech therapy #2

I thought it was time to add a bit of an update on how J is going with his speech therapy. I’ve just realised this blog of mine has been dominated by bump shots for the last few posts (better late than never, hey?), but really life has been busier than my navel gazing posts suggest.

Jarvis has now been back to the speech therapist twice since his initial consultation. We’re going every three to four weeks at this stage, which means that the bulk of the work is done here at home with the tools we’re given in our sessions.

Our speechie has armed us with a number of print outs with game ideas, exercises and information to draw out J’s words, which have been helpful as well as completely daunting. Continue reading