Seeing into the Future.

I’m sorry. 

That first visit to the hospital, when you couldn’t see anything at all, I promised I would do everything it took to get you the help you needed. To give you options which were the same as anyone else’s. 

I insisted on being referred not once but twice until we found you the best doctor, the doctor people got on a plane for, the doctor who knew everything there was to know about our condition, who could suggest treatments and surgeries that even the nystagmus mums groups on Facebook didn’t know about yet, despite their collective knowledge of everything Google has to offer. 

Two years ago, this doctor, this doctor I have the utmost faith in, did what he called ‘a bit of cut and paste’ on you. 

So blase, as he took a scalpel to your eyes. But even as we shuddered, that’s what we wanted-it meant he did this every day. 

But the results didn’t work out exactly as we’d hoped. 

Your head still turned, your eyes wobbled even more as you learned to read books and study things up close. You were growing up, and the surgery hadn’t worked as planned. 

“A repeat surgery is risky”, they said.

“It could cause side effects”, they said. 

“Double vision”, perhaps. 

“Let’s do a test” we agreed, nervously. 
We held your hand as you slipped under anesthesia again, this time so they could put needles into your eyes, temporarily freezing your muscles.

It sounds futuristic! It sounds amazing! What a time we live in!

(It sounds awful. I won’t think about it. Motherhood doesn’t change just because medicine does.) 

When you woke up, it didn’t take long to see that it hadn’t worked as we had hoped it would.

Double vision. Frustration. Exhaustion. I can only share two of those with you. 
“It will wear off”, they say.

“Just two months”, they say. 

But two months to you, is an eternity. Waiting five minutes for the iPad is an eternity. Two seconds while I get you your snack is forever. 

Two months is an age where you learn that life can be hard. And takes energy you shouldn’t have to find. Not at six years old. 
So they’ve patched your eye, and they say we will wait and see. But it’s me who waits, and you who can’t see. And they? They can’t do anything at all.

But I know. I know that this was a test which went badly. No positive effects to speak of. Just a ‘phew, it’s only temporary’. A pat on the back that we didn’t make it worse long term. That it will wear off.

And when it does wear off? 

Your head will still turn. 

Your eyes will continue to wobble. 

Life will still be harder than it could have been. 

And there’s nothing more that these doctors that people get on a plane for can suggest to help you. No more chances to give you the same options as everyone else. 

And so I say, in a bright voice, Rapha, wobbly eyes are our superpower. You and me? We are superheroes. And you? You are my superman. 

And we wobble our eyes and our faces together in the hospital waiting room like maniacs, and you laugh and laugh and I force my face into a smile and am pleased for a moment that your eyes are patched and you can’t see the tears in my own. 

Because I don’t feel like a superhero. I feel like I’ve let you down. 

Today I Do…

Facebook reminded me this evening of the post I wrote last year, on International Women’s day 2016. It was called One Day I Will… and it was about how I look to my daughter when I can’t find the strength in the usual role models many women have.

Michael J Fox has said that Family is not an important thing, it is everything. This year, it often feels like the whole structure of my family as I once knew it has been ripped apart at the seams. And so if family is everything, it’s easy to slip into feeling like I have nothing.

I have seen so many brave and interesting posts today from friends and strangers alike about International Women’s Day. The worst of them were questioning the need for the day in the first place, as if they were somehow put out by it’s very existence, and couldn’t just get on with their Wednesdays. The best of them were supportive, proud, strong, and full of support. And it got me thinking. Aren’t those the very best descriptions of family you could imagine?

Unfortunately and painfully, this year, one woman in my life has turned against me for standing by another. The former is blood, and the latter is one of the strongest, most supportive women I could wish to have in my world, and is every part the family I would choose, and have chosen.

I agree with Michael J Fox. Family is everything. But just as so many incredible women have shown me, it isn’t just the family you’re born with. I have a family with whom I share no kin whatsoever, made up of playdates and favours, of shouting each other coffees and coming round with surprise gifts just because. It’s packed to the brim with jumping on a plane, or listening to each other cry, it’s laughing so hard you can’t breathe, it’s sending memes at all hours of the day and night. It’s made up of love.

A working mother’s Facebook group that I’m on has a tradition called ‘bragging Wednesdays.’ The entire point is that women can share their achievements, and be encouraged and applauded by other women. They range from starting your own business or making multi-million dollar deals, to getting the kids to school on time, or carving out some space for yourself in the busy never ending to do list of life. It’s supportive, it’s lovely, and it’s powerful.

There will always be negativity, and trolls, and people who think that you’re doing the wrong thing, failing to see just how much anxiety we all have about our decisions already, without their input.

Me? I surround myself with the family I choose, the ones who have proven themselves deserving of that word. You brilliant amazing women you, you all know who you are. Happy International Women’s Day, and I love you.

 

 

A Delicate Little Flower

You’re right.

She’s not a “delicate little flower”

And I don’t want her to be.
I don’t want her swaying in the breeze,
Moving this way and that on the flight of fancy of the wind.
I want her growing strong roots
Deep beneath the surface
Twisting their way into the earth,
Creating foundations, holding her own ground.
I don’t want her petals easily picked off one by one
By a boy playing “she loves me, loves me not”.
I want her to love herself, fiercely
Hold those petals fast in her grip
So that no-one can take hold
And make her less of herself
Unless giving freely is what she chooses.
I don’t wish for her to be simply beautiful,
(Which so often means beautifully simple)
I wan’t people to stop still in their tracks
Look at her unique colours, stop to take in her scent
Wonder what exotic place she comes from
That she was able to grow so wild and free.
I don’t imagine her little at all.
I want her to fill a room, until it overflows with her,
Not ladylike, but powerful
Not delicate, but extraordinary.
I can’t picture her on a manicured lawn
Under a cloche
Protected from the elements, not her.
I see her at all ages, in my mind’s eye.
Raging against the heat of the sun
Dancing in the rain
Moving with the wind
Laughing at the storm she creates around her
And I smile, and smile and smile.
Not a delicate little flower at all.
A powerful, strong-willed woman in the making.

5 Ingredients to Tempt the Pickiest Toddlers

Somewhere between the ages of 1 and 2, you may begin to notice a startling and unexpected developmental stage appearing in your baby. An opinion. While they used to allow you to shovel in any old food all whizzed up in a blender or mashed up with a fork, suddenly they are pressing their lips tightly shut, shaking their heads firmly and throwing entire bowls of spag bol face down on your beige carpet faster than you can say ‘Here comes the aeroplane!”
Never fear, after extensive research into babies entering toddlerdom everywhere, here is the definitive list of the 5 ingredients a toddler will never turn his nose up at.

  1. Dirt.
    We’ve all been there. You’ve lovingly prepared a plate of chicken and rice but your baby won’t even take the first bite. Don’t take it personally. They probably don’t realise you spent 2 hours roasting vegetables to make your own stock for this recipe which you found by googling ‘simple baby food recipes’. We have the answer. Have you considered dropping it on the floor? No, not there by the high chair where you just vaccumed. Try on the pavement outside your house where that dog from next door usually does his business. If that doesn’t work, wedge it down the side of the car seat and give it a couple of weeks, there’s nothing babies like more than the taste of slow aged fowl.
  2. Danger.
    Babies don’t like boring food. You know the rules, you musn’t season with salt, but apart from that feel free to go wild. If tumeric, paprika and cumin don’t work, have you considered letting your baby choose their own ‘toppings’ from the bathroom cabinet? Drain cleaner, Cillit Bang, washing powder, these are just a few of my own kids favourites. If yours prefers a slightly different texture, try wrapping the food in live wires, or poking it into a plug socket as finger food. Be creative! We’ve had some great success placing meals onto turned on hair straighteners- BBQ style, as well as mixing in those tiny pieces of lego all babies love for some extra crunch. Nom nom nom.
  3. Competition.
    Y’know what tastes awful? Scrambled eggs. Y’know what tastes delicious? A sibling’s scrambled eggs. Bonus here is that the older the sibling is the more bribeable they will be, and the better their acting skills can be honed too. Get them on board with the plan by offering a small bribe like an episode of Peppa Pig or yknow, a five pound note, if they can ‘unwillingly share’ the meal they also wouldn’t usually touch with a barge pole with said younger sibling.
  4. Timing.
    This one works just as well for older kids, and it relies on a simple rule. What tastes like arsenic during the day time, is progressively more delicious the further past seven the hands of the clock go. While the cheese sandwich you offered at 4.30pm was the most offensive thing you could ever dare to do as a parent, the 9.45pm meal of quinoa salad and stuffed aubergine with lentils may as well be a bag of chocolate buttons in its inevitable appeal. In short, when your little darlings are shouting “I’m huuuuungry” mournfully from their beds like they’re prisoners of war, this is the ideal time to offer broccoli.
  5. Privacy.
    If all else fails, wait until they are distracted by something else, such as wiping snot on your freshly folded washing or climbing a bookshelf, and quietly prepare the food out of their line of sight. Tiptoe to your own bedroom and hide in a corner with the bowl hidden completely from view. If you’re not sure what I mean, imagine it’s the last chocolate digestive biscuit and nap time is too far away to fairly expect you to wait for. Toddlers find that kind of silent behaviour just as suspicious as we do in return. They’ll show up, indignant and open mouthed in no time. Finish off the theatre with a stern “No, this is Mummy’s food” before giving in. Fair Warning: This will probably only fool them for one bite, so make it a big one.  

There you have it. No more excuses for kids who won’t eat their veggies. Just make sure the meal is a week old and sprinkled with shards of glass, in a secret location where their sibling is chowing down after 10pm. Simples.

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Letting It In, and Shutting It Out

I’m a natural talker. An open book you might say. As I recently read (and stole) from Lena Dunham “I have a tendency to overshare”. Sit down with me for five or ten minutes and you’ll probably know my kids names, my labour stories, my gynaecological issues and the latest argument I’ve had with my mother. Ply me with coffee and cake and I’ll probably give you my internet banking details and let you know where we hide the family diamonds too.

I love to talk. And in sheer yin yang synchronicity, I hate keeping stuff in. Feelings are made to be felt, or we would call them ignorings. (Sorry, I won’t do that again.) I don’t try to push them down, I never apologize for crying, (except at the dentist) and I do my best to never let a problem go unspoken about for too long.

Most of the time, this works out pretty well for me. I surround myself with people who love to talk as much as I do, and who love the amazing moment in a confrontation where you see where the other person is coming from, where you understand something you didnt realise before, and where you get a little closer to one another as a result of the conversation. Most of the time I find a little more of myself along the way too.

But some situations can’t be talked to the other side of.

About three years ago, I had an extremely hard summer. My late father would have turned 70 that June, and the roundness of the number among other things made me feel drowned in grief. Not drowning, not fighting for air, not using my last vestiges of energy to wave and shout and grab attention from someone who could save me, but drowned. Lost already, floating face down and unable to even want help let alone ask for it. I walked around on autopilot, struggling to breathe through the feelings which rose like ice cold water in my lungs and throat.

Eventually, after about 3 months, realising I was being neither wife, nor mother nor friend, nor myself, I called Someone. I am blessed to have 2 or 3 Someones, grown ups who I would still be a lost 15 year old without. But this particular Someone has dealt with their own share of tremendous grief from a young age, and built for themselves a life to be envious of despite it. This Someone is a talker too. An expert in communication, quite literally. They lecture about it, counsel others in how to manage it more effectively, champion talking as the vital ingredient to both a happy marriage and good relationships. I was sure they could help, and they did.

What was the secret I was looking for? How could I deal with the feelings of loss and anger and resentment and just sheer missing? How could I get out of bed every day with the weight of loneliness pressing down on my heart?

Don’t let yourself feel it

I think it was the only advice that could work for me at that point. When you feel it coming in, that great wave of sadness and feeling, just say… No thank you, and push it away.  Maybe it appears at first to you like the terrible advice given to everyone’s favourite Ice Queen. It certainly did to me. I felt like a failiure, like a fraud. What? Just ignore the problem completely? Push down the feelings? That’s just not me. But as time passed, I began to wonder.

Grief comes in some great costumes. Some of them are safe, and others are not. Grief can be nostalgic or funny, or it can appear as a memory you didn’t know you had which makes you smile. Often it’s tears and hugs with loved ones you still have on Earth. Once in a while it’s seeing a lost parents exact expression appear on your own child’s cheeky face. It can even be early nights and the promise of a better day tomorrow. And sometimes…sometimes it’s so overwhelmingly sad that you want to give everything else up just to not feel it any more.

Grief isn’t like other feelings. It changes. And when it’s bad and angry and violent, it can’t be talked through. No one can explain it to you. And there isn’t anyone to confront who can give you any reasons or explanations. There’s no one to feel closer to once you’ve got all your anger out, because there isn’t anyone to respond, and even if there was, there aren’t any answers to give. There’s so little to actually know, that you can’t help but feel further and further away the more you explore it. So opening yourself up to that feeling by swimming further out into those deep waters, is often a surefire way to lose yourself entirely.

This weekend my father would have turned 73, and this summer marks another round number, the 10 year anniversary of his death. This is not a time of nostalgic tears or sad smiles. These are not the calm water of memories which I’m dipping my toes into.  I can feel the violent waves swirling around my ankles, threatening my balance, sharp stings of ice cold salt spraying me from time to time, grapsing for my attention, a very real danger refusing to be ignored.

But this time I’m shouting. I’m waving and thrashing and using the little energy I can find to focus on being wife and mother and friend and myself. I’m fighting every instinct I have to talk and wallow myself deeper into the foam. I’m turning my back on my grief for now, pushing it away while it’s too dangerous to submit to. I’m walking back, towards the shore.

A Grumble on Gratitude

I was at dinner recently when the topic of holding grudges came up. The conversation turned to that certain type of person, be it your great aunt Edna or your Dad’s friend Jim, who pretty much as soon as they’ve mailed the cheque or handed over the gift are tapping their foot impatiently for a grateful call of acknowledgement or a card displaying your thanks.

“Oh don’t get me started!” exclaimed the woman opposite me, sitting next to her husband and nudging him in shared understanding. “My mother is still upset with us for not sending out any thank-you cards after our wedding!”

I opened my mouth. Then I shut it again. I didn’t know this couple. This was the first (and likely last) time I have ever met them. This was completely, and totally, NOT my business.

I opened it again.

“Sorry. You didn’t send out ANY thank-you cards for gifts you recieved for your wedding?”

She looked at me, probably puzzled as to why it was any of my business (it wasn’t) and launched into explaination. We got married really quickly, we were moving abroad the week after the wedding, we were so incredibly busy, we didn’t have a list of who had sent what, people don’t care about thank you cards… 

I asked her if they had registered at a store, and she said yes. I commented mildly that there was probably an online list of the people who had sent gifts and what they had sent, so she could start from there.Worst came to worst they could use their invite list and send out a mass email with an apology and a heartfelt thank you for attendance and gifts recieved. I was then really really going to move on to another topic at that point, I promise. I really was. But then she answered with this.

Ok, well most of the stuff is in my moms house in America so I don’t even use it, and it’s not like I can send an email out now three years later. 

This time I didn’t have time to think. “Three years?! It’s been three years since your wedding and you havent said thank you to anyone?”

“I told you, we didn’t have a list. What were we supposed to do, write a list and then add to it every person who gave us a cheque on the day and spend that last week before we moved abroad scribbling thank yous? We didnt have time for that.”

I couldn’t help myself. “Did you manage to find time to bank the cheques?”

In her defence she looked sheepish. There was a lot more I could have said, but there wasn’t that much point. Her basic argument was that people understand that we’re all busy and that thank you cards are archaic and no one cares about getting them. I didn’t need to have an argument with her on those lines because I agree entirely.

Wait, what?

You heard me. I agree. I would happily never recieve another thank you card again. If anything, I feel bad throwing away photos of you and your new hubby, or those adorable ones of your kids where you pretend they can write their own note to say cheers for the onesie. They are archaic, and we are all far too busy to write them.

But someone, somewhere, went out of their way for you. They went out (or ordered online) chose (or asked their wife to choose) wrapped (or put in a bag) a gift which you either directly asked for on a registry, or they thought you would like. Let’s stick to weddings here for simplicity’s sake. This person shared in your happiness, and wanted to help you start your life together. How can you be so incredibly spoiled and selfish that you don’t want to stop and say a quick thanks. How many gifts can you possibly be recieving that you can’t drop people a quick note and say that you appreciate it? And why ask for gifts at all if you don’t need them and they’re all sitting in your moms attic?

I say that thank you cards are archaic, and I stand by that. I believe that an email, phone call or even text can do the job just as well in 2016. But listening to this couple, it felt to me that they had labelled the act of gratitude as outdated and unnecessary, rather than simply the medium of pen and paper. It seemed like they had been so inundated by generosity that they couldn’t recognise it any more let alone appreciate it.

Here’s the personal bit. When we got married, almost 8 years ago, we didn’t invite a lot of people. It was a struggle to find 100 representatives from our famillies and friends. We were early to get married which limited the plus ones, and the three parents we had between us are hardly what you would call socialites. We made a modest registry, and it didn’t get cleared. But  I remember so palpably the feeling of wonder every time I logged on and saw that someone had spent their hard-earned money to give us something to start our lives together. And I would say that after the best part of a decade I could probably tell you well over 50% of who bought us what. I think about you, when I use our iron or our fancy towels. When we take out the cheese toastie maker or when we play monopoly or rummikub. When I look at those ridiculously heavy le creuset casserole dishes that I really might use one day. You helped us build our life together, before we had the tools to do it ourselves. I said it eight years ago, and I’ll say it again now whether you’re reading or not. Thank you.

Listening to this couple who I will likely never see again, I felt like a different species altogether. Yes, I think both Great-Aunt Edna and Jim are awful. Let’s feel sorry for them, they probably don’t have a great deal else in their lives aside from keeping tabs on the gifts which have left their possession. But as well as awful, they are besides the point. To me at least, thank you cards have almost nothing to do with the person they are addressed to, and far more about the writer who sends them. I couldn’t care less if I never recieve another thank you card as long as I live. But I’m damn well going to teach my kids to keep on sending them.

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The Usual Suspects of the Buy/Sell Groups

Social media has opened up all kinds of new ways to communicate with absolute strangers, and there are some real characters out there. While I’ve written before about the mums forums, I’ve recently become active on the selling groups, and the personalities I’ve found… they’re certainly worth a post all to themselves.

1. Embarassing Haggler

As buyers, we all love a bargain. And as sellers, we’re all just hoping to get rid of some clutter quickly and easily, and preferably without needing to get out of pyjamas. No one minds if you ask for a bit of a discount, but come on folks, try not to take the mick.

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2. Cant Take a Hint Seller 

Boy Facebook is in for a treat today. This guy has something they’ve found in a cupboard unused, and is willing to sell it on at an amazingly reasonable price! Some lucky individual is going to be benefitting from what is now completely useless to them.

But wait, what’s this? It’s been up on the group for 45 minutes already and no one has commented. Just bump it, I’m sure you just chose an awkward time for people. Hmm… Ok, try reducing the price. Maybe people want pics? This is strange. It’s SUCH a bargain! Oh wait, that’s it- people probably think it’s gone already. Three letters, S…F…S. That’s bound to do the trick.

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3. Time Waster

Have you ever actually bought or sold anything Time Waster? Or are you just here for the show, and to ask annoying questions? Do you enjoy being on the cusp of a purchase so much that you do this in bricks and mortar stores too, stand in line at checkout and then have a sudden change of heart while you’re reaching for your wallet?

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4. The Difficult Customer

Some people seem to think that the buy and sell group is the equivalent to Argos online, appearing on the group with what may as well be a product number to search for. Filled with details about what they’re looking for, they’re rarely pleased and could benefit from a a point in the direction of Amazon.

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5.  Junk Seller

Not every item needs to be brand new with tags, and we all know the expression “one mans trash is another mans treasure”. However sometimes, if it looks like rubbish it’s probably exactly that. The chances of someone else wanting your daughters’ used trainers? Pretty slim. The likelihood of a rush of volunteers to come and pick up your almost finished Berry Cherry lipgloss? Nil.

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Any firm favourites I’ve missed? Let me know in the comments! 

One Day I Will…

We look to our mothers. As women, I mean. We look to our mothers to see what being a woman is all about, what’s going to happen when we grow up, what our place in the world might one day look like. Little girls with too big handbags on one shoulder, a playphone tucked under our ears as we stir fake soup on a tiny version of the kitchen we beg for treats in. We take everything in, and learn silently how to hold ourselves, how to talk and argue back and reason and pick our battles. How to care and nurture and go out to work and build a home.

But what happens if what we’re looking at is intrinsically flawed? If that formative relationship is poisonous instead of restorative? You want to find a life-long partnership and your mother insists on being hopelessly alone. You want to create a career which you love, but your mother never loved a thing in her life. You can’t imagine a future where your children don’t mean everything to you, but your mother doesn’t know the first thing about you or your siblings. Who should you look to then?

I don’t know about you, but I look to my daughter. This week is Mothers Day, and International Womens Day too. So many people seem to feel that they can’t be feminists, or worse still, that they are somehow ‘bad’ feminists because their main focus is on being a mother. Whether you choose to work at home or out, have kids or not, wear red lipstick and thigh high boots or dungarees and army boots, I wish more women understood that simply to support each others choices and freedoms is to be a feminist.

“My mother taught me…” “My mother showed me..” I won’t pretend I don’t envy the strong and smart women around me who have been given their confidence in feminism as an inheritance. Passed down, from one generation to the next. My feminism is uglier than that, more awkward, self-made. But there’s something pretty special about that too. I’m creating something brand new, something I never had. I was told quite plainly by the woman who should have made me feel invincible, that “It’s only natural to love your sons more than you love your daughters.” So how could I help but feel somehow inferior? Almost.. unwanted.

And yet, this year on Mothers Day, and this year on International Womens Day, for the first time I have a daughter of my own. A daughter I love so much I sometimes think I might squish her little face off. A daughter I want to inherit not just my feminism, but the whole wide world too. A daughter who I want to feel invincible.

So I look to her. I look to her despite my gaze being dragged towards the past more often than I’d like. I look back to her every time I forget that I’m not inferior. I look to her to decide what my place in the world should look like, what being a woman should be all about. I look to her so that ‘One Day I Will’ see her looking back at me.

 

 

 

Why I Didn’t Let My Son Wear an Elsa Dress to School

It’s hard to believe it, but my son is now 5 years old. He loves to play, and his favourite games are imaginative. “Let’s be Octonauts” he will declare on the way to school.  “I’ll be Captain Barnacles, you be a Lemon Shark.”  Bathtime consits of repeatedly drowning Sir Topham Hatt (AKA Fat Controller) with cups of water as he heads off to Tidmouth Sheds.  At any time of day, our playroom could be a shopfront, (“Hang on” my son scratches his chin “We may have some in the back. Do you have a clubcard?”) the set of Masterchef, (“I like all the colours you’ve put on the plate Daddy, but sorry-you’re going home.”) or a dentists office. (They’re all rotten, but never mind, I’ll just take them out. You probably wont be able to eat anymore.” ) 

As you can imagine, he loves dress up, and he has an inclination towards the sparkles. Unfortunately, our society doesn’t provide for boys who want a bit more flair than a Darth Vader costume can provide, so when we’re out and about at friend’s houses and he pulls out a Cinderella dress or a ladybird costume from the dressing up box, I’ve always been pretty chilled about letting him explore his theatrical side. Take a moment to look around the Disney store next time you’re in there. At last count, I could see 22 different types of princess dresses and not one prince outfit. My son could be Olaf, Luke Skywalker, or a Pirate. (White, brown or more brown.) I wouldn’t be too impressed with that selection either. So when R asked me for an Elsa dress of his own this year, we only had to pause for a moment before we added it to his make believe collection.

And then we got the following invitation from school.

“As a class treat, the Reception children have voted for a dressing up party on Friday.  Could you please send in a dressing up outfit for your child.”

And he cocked his head to one side and asked quietly, “I can’t take Elsa… can I?” 

Oh.

Anyone who knows me knows that I take real exception to gendered toys of any kind. Play is play. Make believe is make believe. And if a girl can be a fireman without a raised eyebrow in sight, my son can be the prettiest, sparkliest princess in the room. You better believe I have all the pithiest, wittiest, scathingest replies necessary if you dare to tell me that my son can’t skip around your garden in your daughters Sleeping Beauty outfit.

But at school? Without me there to give him a reassuring nod and smile when the classroom assistant automatically smiles in surprise on instinct as he walks in? What if he doesn’t remember to say “there’s no such thing as boys toys and girls toys” in response to one of his peers saying “that’s for girls”? What if a child in his class says “You’re not a princess” and he’s too embarassed to remember to say “I know- and you’re not Spiderman either”?
And worst of all, what if he doesn’t realise what he’s asking?
At home, or out with me or C, he feels completely safe to express himself in any way he chooses. If he was ten or eleven years old and he wanted to wear a dress to school in play (or even not in play) then it may take some getting used to, but I wouldn’t be worried about being supportive. If my teen goes to school in sparkles and high heels, he knows what he’s letting himself in for, and has all the information in his arsenal to make that choice for himself. But at five, does he really know what he’s asking? As an introduction to ‘kids can be mean’, letting him walk in front of the firing squad without a warning, and risking him feeling embarrassed and unprepared….

Dear reader, I agonised.

I asked my husband, I asked my best friends, I asked his teachers and then I asked my  best friends again. And while I got a wealth of opinions when I broached the question, nearly everyone pursed their lips and and looked just as agonised as I felt. How I wish someone had been confused and asked me what I was worried about. But that’s not the world we live in, not yet anyway.
As a proud feminist I wanted to be able to say “Of course you can be Elsa!” As a proud parent I wanted to be able to say “You wear whatever makes you happy”. The reasons why I ultimately steered him away from that choice, out of fear that well-intentioned people would be mean, or that he would lose some trust in me if he ended up in tears, don’t make me feel proud to be either.

I did realise one important thing though. R doesn’t care about the world we live in. He isn’t looking to make a stand for gender equality, he isn’t trying to push boundaries. The kid just wants to wear a sparkly dress. He doesn’t need to face even the risk of a ruined day because his parents believe in giving him the gift of being anything he wants. He has plenty of time to be anything he wants, and if we can give him another year or two before he learns that kids (and indeed grown ups) can be mean, well thats a special gift too.

My little Gingerbread Man came out of school that day full of stories and excitement, the grin on his face the only thing more edible than the candy buttons on his outfit. And while the little voice inside me wonders if I made the right choice, it’s overwhemingly silenced by the feeling that my Elsa wouldn’t have come out anywhere near as happy. Can you tell me that I’m wrong?

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Wobbly Wednesday 2015

My eyes never stop moving.

That’s not a clever way of saying I spot everything (quite the opposite actually) or that I’m constantly busy (ditto), it’s just a statement of fact. it sounds like a small thing, eyes which jerk or swing from side to side, the way mine and my R have done since we began to see, but as a member of the Nystagmus Network, named after the condition we both have, I see so many questions daily, so many confused parents and worried adults, people who have to work just as hard as their eyes do to get on with a normal day, that when Wobbly Wednesday (a day to spread awareness for Nystagmus) rolls around, I can’t help but jump on the bandwagon.

Spreading awareness is a funny thing. Especially in a blog form. While my closest friends probably know more about Nystagmus than the average person who has the condition themselves, I can ply them with lattes and croissants, and distract them with questions about themselves interjected into an otherwise self-centred conversation about my life and my child and my fears, y’know, to make them think the conversation is two sided.

I can’t do that anywhere near as effectively on a blog. I probably have only about 3 more minutes of your attention span before you realise the jokes are drying up and click through to something about Kanye West. So I’ll try for a top 3.

Top 3 things I wish you knew about Nystagmus

  1. My glasses don’t mean I can see as well as you, any more than a walking stick turns an arthritic into a cross country athlete. I wear glasses, and so does my son. They support us, help the development of the eyes, and in my case-improve my vision where short-sightedness is involved. But Nystagmus means our vision is poor, with or without our specs. In R’s case, it means he is registered partially sighted. No amount of “lens 1, or 2? better with? or without?” will make a difference to that.
  2. We’re so tired. The simplest way of explaining it is that our brains have to work a lot harder to produce a still image for us to understand what’s going on around us. It’s an extra step in processing information, in seeing what someone is showing us, in reading a book, in playing a game. New settings are particularly difficult. It can be frustrating (especially if you’re five), it’s always exhausting, and often when I’ve been to a new place for the day, my eyes physically hurt by about 4pm.
  3. I just can’t see that. Whatever it is that you’re pointing to on your computer screen, yes even if it’s font 18. The faces of the people on stage, yes even from the front row. That sign out of the car window, yes even if you slow down. The detail in that drawing, yes even if I hold it closer to my face. Your face in the sunlight, yes even when it isn’t hot ouside. Who you are when you drive past me in the street, yes even if you beep and wave.

Next week, my R is having an eye surgery to help with some of the symptoms of his Nystagmus, in particular his head tilt, (adorable though it may be.) We are nervous about the operation as any parents would be, but we are also indebted to the UK Nystagmus Network and the Barnet VI team for being not only a font of knowledge, but also a community of kind listeners and intelligent answers and support. There is no cure for Nystagmus, but people like the ones we’ve come across not only never stop tirelessly looking for answers, but also help us get on with our daily lives so effectively that we have to suffer through people insisting there’s nothing wrong with us in the first place. A great testament to their hard work.

Lastly, I don’t run marathons, I don’t do sponsored mountain climbs, but I do write things down.

If you enjoy my writing, if you’re one of the people who stops me in the street and says “Hey, you haven’t blogged in ages”, please consider texting WWNN15 followed by any amount at all to 70070 to donate to Nystagmus Network.

Wobbly Wednesday