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

 

Advertisements

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

Baking with kids and meltdowns

Baking-with-kidsI hate baking with my kids. There I said it. I also hate doing craft with my kids. Two strikes on the ‘bad mummy’ list for me, I guess. But it’s true, whether by nature or by nurture, such activities strike the greatest amount of internal (and sometimes external) groaning on my behalf.

But despite this, I see the value in these activities for my boys so I ‘woman up’ and do them anyway. In doing so, I find that just as they encourage skill building in my boys, they allow me to practise skills that I’m trying to hone like patience, calm and deep breathing! And let’s face it I need a lot of help in those areas. The things we dread often have a lot to teach us.

For the last week I’ve been home with Jarvis while he’s had the chicken pox, it wasn’t a bad dose thankfully but the isolation was starting to drive us both a bit batty. One of the days I was also working from home, J proclaimed that he wanted to make a cake.

After a day where my focus had to be on work as well as him, I thought the least I could do was dedicate some time to do something he really wanted. It was getting towards dinner time, but I thought we could quickly make a cake and get it in the oven at the same time.

I made a cake I hadn’t made before and halfway through I was really struggling. Jarvis was being a little too ‘enthusiastic’ with his taste testing and I was trying not to say ‘don’t do that’ all the time. The butter wouldn’t cream properly and when we navigated past that issue, the mix almost overflowed the bowl. It turned out I wasn’t the only one struggling to cope, as my cheap hand-held beater stifled a mechanical moan, buried deep into the thick chocolate sludge. I talked myself through it until Jarvis sat on the bench, happily chocolate smeared as his tongue stuck through the holes in the beaters. It may sound silly to say such a thing felt intensely stressful to me, but it did. And in those moments, it’s not just my baking skills I call into question but my mothering skills in general. And that’s what’s really silly.

Because you know what, despite my struggle over that cake and the fact that it almost overflowed its tin in the oven and that I had to hastily cut the almost burning top off so that the inside would cook, when it was finished it tasted pretty darn good. We slopped some icing over the top and some dinosaur sprinkles and from the outside no-one would know of the struggle that made that cake.

And I could have left it that way, but sometimes the struggle is worth sharing to let others know that they’re not alone in feeling a certain way. That it’s okay to hate craft and baking and to secretly wish for some time for yourself as a mother. It’s okay to do something just for you and to hell with what motherhood is supposed to look like. Standing in your truth feels kind of powerful, so I invite you to do the same! What aspects of motherhood do you kind of suck at but you do anyway?

If you can relate to this post, I invite you to share! I’d love us to all embrace our imperfections together.

The benefits of the cry it out method

cry it out (2)

‘Crying it out’ was never something I was comfortable with trying with my children, but when it comes to myself and my own sanity – it seems I have unwittingly reached my own ‘cry it out’ phase.

I never realised I had so many emotions bottled up inside me, until a routine visit to my kinesiologist took a turn for the teary. In searching for what emotions I was storing up in my body, the big one was fear. It was languishing in my right kidney apparently, and although this sounds weird  – I was pretty sure I didn’t want it taking up residency there any longer. Upon releasing it using Emotional Freedom Technique (EFT), she set about finding the source event that lead to so much fear camping out inside me. It’s here when the waterworks started flowing unabated. My own inner-wisdom knew straight away what it was … and through tears I explained to her everything I felt when we found out Jarvis had facial palsy. How in those moments of fierce love for my baby, I had so many fears of what life would hold for him and so many unanswered questions and I guess I did what any mother does – pushed these all deep down and set about being the best mum I could be to my son. Fast forward four or so years and all this feeling swallowing was doing me some damage. This year in particular, with the countdown to primary school, all the fears and unanswered questions were looming ever larger than before.

It’s been about six months since this first attack of the ‘cry it outs’ and there have been quite a few public displays since, and I must tell you that though embarrassing,  they have all been therapeutic and on reflection have let me know that I’m on the right track with decisions we’re making regarding Jarvis’s therapy and schooling. My latest struggle to keep the tears in was at a Prep info night at our chosen school last week. There were quite a few times when I was on the verge of tears as the Principal and other staff talked with pride about their school and what they believe education should look like.

The one that had the waterworks silently flowing was when the prep transition officer said that she was often asked if a certain child is ready for Prep. She said that she didn’t want to hear that question anymore, what she’d like to hear asked is ‘Is your school ready for my child?’ and answering her own question she said ‘we are’.

This question and its answer hit me in a lot of soft spots. The place that still holds residual anger about words a family member said, that got back to me, to the effect of ‘there’s no way that kid will be ready for school next year’ (among some other choice ‘observations’), the words of our pediatrician warning that he may need to go to special school (despite not knowing the results of an IQ test) and that part of me that has held fear since the day he was born. There’s still a little way to go but my heart is telling me that we’ve found our school and that my little boy will be one of many splashed over Facebook next year in his too-big school uniform heading off to big school. Although the tears flow sometimes when I think about my boy, and the challenges he faces,  I know that he is strong and capable and that many surprises lie ahead of us. I am happy to fight alongside him and make sure he gets the additional help he needs and though I may cry it out in public, that I too am strong.

So although ‘cry it out’ is not something I advocate for babies – I definitely advocate it for parents … particularly when the fear threatens to overwhelm and you don’t know what your next step will be. So tell me, when have you had to ‘cry it out’?

Motherhood moments: the second son

second sonWe have called him Hugo Bear since he was a baby, but he’s lately started to retort ‘I’m a boy’ when he hears it with a two-year old attitude and precociousness that astounds me most days.

He’s taken to telling me to ‘go away’ as his bottom lip drops to indicate displeasure that is gone as quickly as it came and he is soon tugging at my hand once more to lead me onto his next adventure, of which I must be a participant (willing, or otherwise). ‘Come’ he cries as he pulls me towards the sandpit, where he instructs to me to sit forcing a miniature garden fork into my hand. The Hugo-getter was my other nickname for him as a baby, as his happy-go-lucky nature belied a hefty determination to reach his next milestone as soon as he possibly could.

He is still like that now, a cuddly, strong, bull-at-a-gate with a mop of blonde hair that is getting darker just like his brother’s, cherubic cheeks and a cheeky smile that charms everyone. He sings a lot, mastering words to nursery rhymes and if he hears music he particularly likes, he’ll grab the small electric guitar in the corner and rock out.

I can already feel the closeness between him and his brother and love to watch them playing and chatting to each other, especially when they don’t know I’m there. They are both fiercely protective of each other and I feel my heart expand in my chest every time they hug and kiss each other goodbye and goodnight. I hope they continue to be the closest of friends as they grow.

On the weekends when his father is home, I can’t even do up his seat belt without him yelling ‘No! Daddy Do it!’ … like he relishes the time with his dad so much that he wants to milk every moment, but then by Monday it’s back to ‘Mummy do it’ and I’m secretly pleased to still be needed by this independent little guy.

Mondays and Tuesdays are Hugo and Mummy days after we drop Jarvis at kindy and he loves this one-on-one attention and as the weeks go by I realise how quickly he’s growing up. When we talk about J going to school next year, he pipes up ‘me too’ and I can half imagine him in his toddler bravado walking through the gates and wanting to stay. I have to whisper to him, don’t grow up too quickly my son, and he just smiles and laughs and it feels like in that moment that if I blink my eyes, he’ll have grown too big for my arms.

And so, I linger a little longer when he’s fallen asleep with his chubby hand up to his face, his breath deep and slow. These days, though long, are short. He is growing right before my eyes, so I try and go slow and enjoy each crazy toddler moment with this precious second son of mine.

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! 

How to make the most of early mornings

Make the most of early mornings

It’s a popular productivity tip to get up an hour before the rest of your household and get stuck into those things you need uninterrupted time to do – like partaking in exercise, studying, writing and planning world domination. It’s a good tip and one I have employed at various points of my life. I like the early dawn when the birds begin to chirp and the neighbourhood seems to unravel from its collective doona.

But that’s not what this post is about. It’s about when instead of a gentle unravelling with a couple of snooze button hits, the wake up is a 4.30am stomp of feet on floorboards by a two or four-year-old, or in extreme cases both, yelling MAAAAMMMAAA at the top of their lungs. Times this happening by seven and you end up with one tired and cranky ‘mama’ by the end of the week. I’m sure dadda is tired too, but his ability to snore right through some of these occurrences is truly startling.

So what are my options? Option number one is to get more sleep and that’s a work in progress at the moment. The four-year-old is coming around to the idea through some gentle bribery and he managed to sleep until 5.15am this morning (small wins and baby steps, people!) and his little bro managed to get to 5.30am without his brother screaming the house down. Option 2 is to wrestle some sanity out of my mornings from such an early awakening. I’ve quickly found that yelling out ‘it’s too early, go back to bed’ to no avail is a fast track to a grumpy, frustrated mum before the sun is even up, which is no way to live. So, how can you turn an early wake up call into a productive start to the day?

Don’t lose your cool: Look, I’ve done it. It never achieves anything other than leaving me tired, cranky and frazzled instead of just tired. Take a couple of deep breaths and see if you can get them involved in a quiet activity while you try and simulate a more dignified awakening, or try and catch a few more Zs.

Put a positive spin on it: Breathe in, breathe out and tell yourself that ‘this too shall pass’. This is advice that can apply to all aspects of parenting that sucks. ‘This too shall pass’. This morning is a snippet of time, that although ridiculously annoying, will eventually fade into the haze of early motherhood to be replaced with staying up late at night for teenagers to return home. Gah!

Get up: If the Zs elude you (which they often do for me), get up and start your day. I find the more I lay around trying to get more rest, the more agitated I become. By getting up I signal my intention to make the most of the day, however it began.

Remain detached: Try not to get involved in internal finger pointing about possible reasons they’re waking up early. If you’re anything like me, you’ll start to blame yourself for this. Which is just wasted energy. By keeping emotions out of it, you can keep a calm head that will allow you to brainstorm any possible changes you can make to move your children gently towards more sleep.

Hatch a plan: Take your brainstorming and start to implement small changes to encourage more sleep or if that’s not possible – more independent play in the morning. This is still a work in progress in my household as many tried and true methods have proven unsuccessful so far, but I’m working on consistency and patience and hopefully we’ll get there at some point!

Coffee: No explanation required!

So, there’s my tips for early morning sanity! I’d love to hear yours… Bel xx