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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3 thoughts on “My boy with the crooked smile – Part II

  1. Another beautiful post, I cried heaps when .I read the first post, more out of fear and worry for Jarvis and his parents and I cried again today but more for the love of a mother and child who have had to endure a lot in 5 years and no matter what is thrown at them will continue to walk side by side through life together.

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  2. I missed reading your posts and today I’m in a defective mood, my bBy Melo turned 1 years on the 27 September, he has not recovered from the facial parLysi and inspite of all my hope it’s here to stay. I’m still struggling with talking about it and hearing people comment about his crooked smiled he is happy, feisty child and he is an absolute joy to us. I know one day I’m going to have to let him go into the world and I’m so scared

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    • Hey Portia – I just realised I missed this comment from months ago! So sorry to hear you were having a down day – I can really relate. For me the first two years where really hard – I was still coming to terms with it myself and had to find a way to talk about the facial palsy and in a way educate others about it as everyone seemed to want to know everything about it!

      I let my beautiful boy take his first step into the world this week as he started primary school. I thought I would be so upset, but with time has come true acceptance and knowledge that we can face the challenges ahead. He was so, so excited to go to school so I was too. I know there will be bumps along the way, but he keeps showing me how resilient he is and I know everything will be fine. This has taken me five years, so please be kind to yourself and know that you’re doing a great job and that your beautiful boy is thriving and will continue to bring you so much joy.

      Sorry again for missing your message, please keep in touch. Bel xx

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