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

The Formula for a Happy Baby

I took a bus ride today with my daughter. She is 11 weeks old. About five minutes into the bus journey a woman sat down adjacent to my seat, and smiled at my baby girl. “What a pretty baby” she commented. “She looks so happy and healthy.” I thanked her, and smiled in return, and then checked the time so that as all mothers of new babies do, I could begin the arithmetic we all spend the first few months working out. How many hours since the last feed, how long the most recent nap was, when you want the baby to settle later than night, and all the other futile calculations that our newborns ignore and do whatever they fancy regardless of.
I mentally calculated that it made sense to offer her some milk, and I put her back in the buggy and reached for my nappy bag. I took out a muslin and placed it over my shoulder. I unscrewed a bottle of sterile water, and reached for my nifty formula holder thingie which allows me to measure out an exact feed and take it with me for the day. I mixed the powder into the water, gave it a shake, and reached for my little girl.

“Oh,” the woman commented with a sad shake of her head. “What a shame to give something so processed and fake to her when she’s so tiny and innocent.”

Now don’t get me wrong here. I have a lot of opinions on breastfeeding, and nearly all of them are wholeheartedly pro. I believe Breast is Best. I believe that it’s a huge failure of the media and an important feminist issue that so many teenagers and even adults believe that breasts are solely for sex rather than feeding our children, I even agree with the ban on discounting formula and I have no bad feelings towards the many NHS hospitals who do not provide it on the post-labour wards.

I do not however, believe that it has magical properties which raise my children’s IQ, or stop them from becoming obese. I don’t think my breast milk will imbue them with a great work ethic or even protect them from allergies and intolerances. Most of all, while I believe that it is an amazing start for your baby if you can do it, I don’t believe it’s the right choice for everyone. And dear stranger, until my offspring is looking far less than ‘happy and healthy’ than you yourself just noted, I certainly don’t believe it is any of your damn business what choice I make and why.

I won’t bore you with my own journey, as we all have different reasons for how we choose to feed our children, and as I recently said about career choices, we only have our own families to answer to. I do however have something to say to the woman on the bus, and anyone else who thinks I or they should be ashamed of the processed nature of the food we give our ‘innocent’ children.

You aint’ seen nothing yet.

If you’re looking for something for me to be ashamed of, come round at 3am, when I tell my baby to shut the hell up when she’s been awake for 3 hours straight for no apparent reason, and then stay to hear my 4 year old repeat it to his Thomas the Tank Engine the following day. Pop by at 5am when I forcibly drag him back into his bedroom and threaten to take away everything he owns if he doesn’t leave me alone until 7. Watch me take lazy mornings off from being the mummy of a new baby to chat to old friends and continually replace the dummy in my daughters mouth rather than interact. Peek through my living room window on the days where I just simply cant be bothered to entertain my son and he has about 4 hours of unadulterated iPad time on the sofa, or when I look at my watch, notice that I’ve missed supper time, swear loudly and announce “Cereal for dinner!” to his great joy.

I could keep going, because like all parents, I have tons that I could label a ‘shame.’ Enough to keep me up at night if I suddenly decide I’m looking to self-flagellate. But reaching for the formula container by choice or by necessity, ensuring that my child is gaining weight, is well fed and happy, simply isn’t on the list.

'Does it come in soy lite?'

Is it any of your Business, if it’s Working for me?

I turned on my computer this morning to find links to four separate articles about working versus non working mums on my Facebook newsfeed.

I have no issue with people discussing the topic, after all, it’s a difficult and often heart-wrenching choice for anyone to make, and deserves discussion. This is especially true today, where the costs of childcare often make the financial side of having a career almost irrelevant, and yet the costs of living are so high that every penny counts. This dynamic forces women back into the workforce where they might otherwise choose to stay home, all for the couple of hundred pounds difference between the salary they receive from their employer, and the cheque they hand over to their childcare provider each month.
We also live in a time where taking five or ten years ‘out’ to have kids, often results in the way back ‘in’ being an impossibility. All very well while the kids are at home, but most of us are hoping for another thirty or forty years of more than waiting by the school gates once they’re out of nappies. Feminism is in the spotlight more than ever, and the debate is still raging whether your parenting choices reflect your opinions on equality of the sexes.

Yes, there’s a lot to say on the topic. If you fancy, we can go out for coffee and I can tell you my own story of how I came to work part time. The bits I like, the bits I don’t like so much. The guilt I feel when I ignore my 9 week old for an urgent deadline, the happiness I share with my 4 year old who I am lucky enough to pick up from school every day.

Oh no, sorry. I wasn’t talking to you. I was talking to the organisations and media outlets who want to get up close and personal with me. Who know what’s best for me, my husband, and our children more than I do. The newspapers who have clearly had a quick look at our yearly income and budget and know how much we need to get by. The university lecturers who eavesdrop on me and the hubby in bed at night when we discuss our work/life balance. The research bodies who know how good I am at my job, and how much my kids like or dislike their childminder, who understand without even asking what my plans for the rest of my life are, the personalities of my children, the aspirations of my other half. I am just so glad that they feel like they know me well enough to give me their opinions as scientific fact as to how I live my life.

I’m talking to Harvard University, who for some reason are putting manpower and funding into research that tells us that “the daughters of working mothers enjoy better careers, higher pay and more equal relationships than those raised by stay-at-home mothers.” Well, I’m somewhere in between on the working scale, so my daughter isn’t completely screwed up then, but I’ll be sure to tell all the strong, unselfish women I know who have made the hard choice to stay at home with their kids that their offspring will be minimum wage women in abusive relationships. Cheers Harvard.

I’m talking to the National Childrens Bureau, who have asked “whether ‘outsourcing’ motherhood is the best way to create a healthy society”. Give me a minute while I call all the fantastic women I am proud to know who work both in and out the home, whether it’s to make ends meet, or to be excellent role models for their kids, or simply because they are bloody great at their jobs, and let them know they are contributing to the loss of functional society as we know it.

I was referring to the EU council, who have thrown their two cents in, calling the “number of mothers working part time… a social challenge.” May I just take this moment to apologise to the whole of Europe, for the gall I’ve had to dare to find some work/life balance in our household. I can’t believe I ever thought I had the right to do a job I enjoy, at the same time as attempting being a hands-on parent.

That’s just three examples, all from the month of June, outlawing working mums, stay at home mums, and part time working mums. In one calendar month. Can you just stop to think for one second what an article that suggested that men were “outsourcing fatherhood” would be like? What the reception would be to the suggestion that the sons of stay at home dads are going to be incapable of forming well adjusted relationships or holding down jobs?

I have hardly met a mum in my life who doesn’t carry around some level of guilt for the choices she makes in terms of her career and kids. The ridiculous thing is, it’s clearly a completely personal decision, based on your finances, your family planning, your own goals, or simply how much you enjoy both your job and being with your kids all day!  And yet so many incredible women carry regret or uncertainty, fuelled by the ridiculous media attention and the questions they force on us collectively every time we switch on the computer or open a paper. “Should you wait to have kids? Do you work too much? Is there ever a right time to go back to work? Should you give in to social pressure to find a job?” The list goes on, when the only question any woman needs to ask herself is, “Is this the right choice for my family?”

We’re there already media, we’re judging ourselves right left and centre. We really don’t need your help.

Tell a friend they’re fat day? Hell yes.

Steve Miller has suggested something which sounds cruel, preposterous and unnecessary. He claims that on Wednesday January 7th 2015, we should all find a chubby friend and let them know they are a heifer. Tell a friend they’re fat day would be an annual event, and would kick start people’s weight loss in what he hopes would lead to better all round health, as well as raising awareness of the obesity epidemic worldwide.

And then the internet broke. Twitter filled with indignation as people argued right left and centre that this was a nasty scheme by a man who had no right to dictate to people on weight and health, and plus size advocates everywhere took to their blogs to let us all know how dangerous this kind of attitude can be for anyone with an eating disorder or any kind of weight issues. That it is the same as bullying, that it is nothing more than ‘fat-shaming.’

And three years ago, I would have agreed with them. But then again, three years ago, at 5”1, I was also nearly 200lbs.

I’ve never found weight particularly easy. And by this I don’t mean that I was always fat, as I don’t think that’s true. Photos of me as a kid are pretty standard, and even as a teen, although I distinctly remember feeling bigger than my friends, I wore size 10 (UK) jeans at 16, so I suppose that wasn’t the case either. I mean I have never had a good understanding of what I look like. The scales never seemed to ring true to me, and even when I saw them go higher than my peers, I tended to excuse it as my shape or my curves. Maybe I was right. I was 160 lbs at my wedding, and felt slim and beautiful, even while knowing I had been 20lbs less than that two years previously. I’ve recently had someone look at a wedding photo of me and express surprise by how much larger I was.

Even after I had my son I was sure I had ‘dropped the baby weight’ right away, and yet a year later, I was standing on the scales for the first time in 2 years, shocked that I weighed in at 198 lbs. Wasn’t I still a size 12/14? Yeah, I had bought that size 22 dress, but wasn’t that just so it fit over my bust? I know I got that denim skirt which was a 20, but I’m wearing it low, and some shops just have ridiculous sizing…. don’t they?

Somehow, I had become obese, and even at that point, I didn’t believe it. No one had ever told me. I had definitely said things to test the waters, to compare myself to other people and see what my friends thought, and no one had ever told me I wasn’t just your average curvy girl. I suppose people were embarrassed to point it out to me, they didn’t have the tools or the language to be sure of not upsetting me, they just didn’t know what to say.

I started my weight loss journey, which is still ongoing, but involved losing around 60 lbs over around 18 months. I worked on portion control, food groups, my eating habits-including time of day and self control, exercise, and most importantly, the underlying emotional issues which most overweight people carry around on their person just as often as they might carry a KitKat. No part of me regrets stepping on those scales and being woken up to the reality of what I was doing to myself and my family, and the future I was building for us by letting myself be morbidly overweight. Can someone that is a size 10 be as unhealthy as a size 24? Of course they can, but then you have an obligation to tell them that too. Steve Miller has made a day that perhaps should be called “Tell a friend they’re unhealthy day” but as massive an issue as obesity is in this generation (no pun intended) I can see why he has zeroed in on one clear issue.

So do I think you should randomly walk around on January 7th pointing at everyone with a double chin and yelling out “fatso”?! No, I most certainly don’t. People are more complex than you could imagine, and it takes knowing someone truly well to be able to approach them about such a multi-faceted issue as weight. So maybe the flippant sounding title of the day should be addressed. But if you have a friend who is more than just your average curvy girl, who doesn’t have an underlying physical or emotional disorder, and who has never told you that they know they are fat, who never mentions starting a diet, and describes people far smaller than themselves as larger…. and you care about them enough to worry about their health, is it really so cruel, preposterous or unnecessary to have a quiet and sensitive word?

I wish someone had had one with me.

obese me

August 2011


April 2014

Bah Humbug

It’s that time of year again, and while I love Chanukah as much as the next Jew, it’s impossible to get away from the Xmas spirit. Winter sales, goodwill to all, and chestnuts available at every corner shop, what’s not to love?

Well, a few things actually. And maybe you’re all too close to see it, but with all the respect in the world, let me give you a run-down of the things I would change if my household kept Christmas.

1. The menu.

I think it’s fair to say that the whole of Xmas day centres around the big festive meal. For thousands of years people have been gathering around the dinner table and breaking bread together to celebrate this pinnacle in the Christian calendar. But who came up with the ideas for the grub? On what other day in the year would anyone choose Turkey, the arguable worst meat of choice to be the centrepiece of the meal? Beef, Lamb, Duck, even Chicken is preferable to Turkey any other day of the year. Let’s call a spade a spade here, Turkey is dry and hasn’t got much flavour, hence why you’re spending 2 to 3 hours preparing stuffing and sauces to accompany it. To top it off, although no one’s arguing with roast potatoes, does anyone eat Brussel Sprouts at any other meal the entire year? Let alone the weird tradition of Cranberry sauce, a foodstuff that just doesn’t exist whatsoever outside of December 25th.
Lastly, every meal should be complimented by the grand finale of dessert. And dessert will never ever mean fruit cake. I don’t care what you call it, or how much alcohol you add to it (although it probably helps), a Xmas Pudding is not dessert. Give me chocolate cake, give me ice cream, even something citrus-y would round off the meal well. But why are we pretending that Xmas pud is in any way appetising? In my house, it would be Haagen Daaz and sticky toffee pudding, maybe with a pavlova on the side. Extra points for the fact that none of those options takes months of my life to prepare. If I wanted to spend 2-3 months feeding something in small increments daily, I would buy a hamster.

2. The decor.

Love the Christmas lights, in fact I think we should add that to Judaism, a festival where we decorate the outside of our homes with ostentatious flashing lights and various plastic accompaniments. I can just see my home now, with a rendition of the 10 plagues of Egypt on my front lawn, and a replica of Mount Sinai on the roof. Fab.
This brings me to Christmas trees. Excellent idea I would even up the ante. Let’s bring all of the outside in, creating an indoor Xmas garden, complete with flowers and grass (astro-turf if need be) and why not woodland creatures, so cold at this time of year and in need of some Xmas spirit just as much as you.
Yes, I’m joking. But it is kind of weird that you bring a tree into your living rooms. Doesn’t it make a crazy mess of needles and twigs? Doesn’t it brings in bugs and the like? Do you have to buy a special spray for that? So many questions.

3. The list of demands.

This one is actually pretty serious, as I’ve read that the average household will spend £868 on Christmas this year. Nearly a thousand pounds on one day of the year, that just can’t be affordable for 95% of the UK. And meanwhile your kids are sitting at home writing a letter for Santa? A magical being that flies in, drops off their hearts desire and leaves again without so much as a thanks for him or his hard working elves [AKA unpaid midget workforce]. (Seriously, does anyone’s kids write thank you notes to Santa?) Doesn’t the whole thing seem a bit entitled? From the outside looking in at least, it seems like the last way I want my children to consider the presents we work hard to provide for them. Maybe it’s a little Scrooge of me, but I like to think that I would use the opportunity to talk to my kids about wants and needs, earning and spending, and ask them to think of one or two things they really want, which Santa won’t be bringing, but their hard-working parents will be.

4. The Xmas season

This is a tough one, because we all enjoy some of the elongated Xmas perks, such as Starbucks red cups which appear Nov 1st, or Xmas songs on the radio from what feels like mid-summer. But when I try to get an email response at work on December 3rd, and get told that the company are “winding down for Christmas”, it can really make me feel peeved. Similarly, spending the whole of December attending various Xmas lunches and functions with the people I anyway see and speak to every single week can be a little grating. Cmon boss, just give us the afternoon off if you’re trying to make us feel festive. It would probably cost you less.

Any other holiday traditions that you would scrap?




The Poetry of Trying

Did you know that you don’t hide it very well?

To the world you sometimes do, as the doting grandma standing at drop off, your grandson running up to give you a cuddle, one it isn’t hard for you to reciprocate, unlike the ones of my own childhood. You slip into that role quite easily, I suppose my son is far easier to love than me, that’s true.

But to me, you don’t hide it well. I can see it when your eyes glaze over while I’m talking, or when you say the simple word “yeah” while I’m mid sentence, which means you’ve got something of your own ready to say, no longer listening to me at all. I can spot it when we sit in silence next to one another, nothing to say except enquiring about mutual people in our lives, “Have you spoken to your brother?” “No. Any news with your sister?” “No.” And back to silence again.

You don’t do a very good job of making me feel loved. Whether you try to or not I suppose is irrelevant to me, but maybe it’s important in the narrative of the story. Most things which are hard, which don’t get easier, we give up on. It’s human nature. It’s hard for you to find any love for me, you can’t deny that. Most days it’s hard for you to even think of me. Should I give you credit for not giving up?

I want to be fair, and I don’t want to blame you for something which is outside of your control. Love isn’t something we choose for ourselves, it arrives in our lives and takes us by surprise, it rushes over every part of us inside and out, enveloping effortlessly in its warmth. If you could choose to love me, I’m sure you would. After all, it would make all of this so much easier. And yet we have none of the warmth, all we have is the cold. And the trying, of course.

But maybe, maybe you’re not trying any more. Maybe when I expected you to call this week, to find out whether everything was okay with the scan I had for my second child, the next in line for your role of doting grandma, to see how I was feeling, maybe that expectation was ridiculous. It’s been five days and still no call.

Should I take the lack of contact as a sign that you’ve given up on me? That the effort it takes to try to love me, to try to meet my obviously high expectations has finally become too much for you? We all have our limits. Perhaps you can’t keep trying any more.

Perhaps I can’t either.

Wobbly Wednesday (or ‘What I Saw Wednesday’)

By far the most common question I get asked when I mention that my son R has a visual impairment, is “How much can he see?” Although it’s an innocent question which seems simple enough, there is no clear answer for a child (or an adult for that matter) with Nystagmus, the condition my son and I were both born with, which causes an involuntary eye movement. While sight will vary from person to person, the far more interesting fact about Nystagmus is that it also varies depending on situation, stress levels, schema and mood. As part of Wobbly Wednesday, I thought I’d write a little about our own ‘out of the box’ visual experiences with R, many of which were just as much a surprise to us at the time, even with my own experience with Nystagmus, and bringing up a VI child.

So here we go.

Five times my son could see less than expected. (Yes, even with his glasses on!)

1. As a baby, it was nearly impossible to tell whether R could see in any given situation, but once in a while it was extremely evident what he couldnt see. One day at a lunch with friends, one of the guests was speaking, and I noticed R crawling towards the radiator, which I knew was on, and hot. Not wanting to be rude and leave the table, I uncovered an extremely sparkly charm bracelet I was wearing, and dangled my hand down by my chair legs, at his eye level, moving my wrist so that the sunlight and faux gems could attract his attention and move him away from the heater. I was less than a metre away from him.
R, around 14 months old was sitting up, facing in my direction, but however fiercely I moved my arm, he had absolutely no idea anything was happening. Not knowing I was wearing a bracelet, or that I wanted his attention, with no auditory cues, I may as well have been doing nothing at all. I realised how important my verbal cues had been to him up until that point.

2. I am told all the time what a surprise it is to find out that my son has a VI. He runs, jumps and plays like any other 4 year old boy. Thankfully, he has no fear. But once in a while, this can backfire. On holiday last year, he was almost 3, and we were visiting Hershey’s Chocolate Factory in Philadelphia. The room was large, and it sloped downwards on a walkway and then turned to the right. I told R he could run ahead, and warned him that the floor wasn’t flat, an issue of depth perception that we take for granted, but a person with Nystagmus would find it hard to notice. He took a couple of cautious steps, got a feel for the gradient, and ran down the slope to the end. Before we knew it, he was lying flat on the floor, after running into the metal handrail at the end of the room. it being parallel with the wall, he had not noticed that it wasn’t flush with the wall, another issue of depth perception, and had underestimated how much space he had to go before he needed to turn right. This kind of situation, where he feels like his eyes misled him, can be extremely distressing for a child with Nystagmus, and can cause temporary fear. Completely of his own accord, for the rest of the day in this unfamiliar place, he walked alongside us and did not run ahead.

3. We all know the slightly unnerving feeling of coming across someone in a mask or full costume and not knowing who it is, relying on their voice to give them away. A visual impairment makes this so much more complicated. The Jewish holiday of Purim, (think Halloween for a good VI comparison) means that many familiar faces are suddenly covered. While this is obviously difficult, what you may not expect is how much as small a change as a funny hat or glasses, or a design drawn in face paint can confuse someone who is partially sighted. Last year, R joined in with his friends in dressing up, and was unable to recognise people he saw every day and knew well, because of such simple additions to their attire as a sparkly hat. Friends of mine who knew his condition cottoned on quickly, stooping down to his level and announcing their name when they said hello, (a sensible thing to do with R even in a usual situation) but many people rushed past waving at him, or just said hi breezily, forgetting what a struggle it was for him to recognise them now that they had pink hair, or a huge red nose. By the end of the day, he was more exhausted than I’ve ever seen him, and he slept for close to 15 hours that night.

4. It’s okay, he can sit right at the front.  Another reassurance I get a lot from friends and family. But sitting close up does not help in every situation. (Although it is obviously better than sitting far away!) One good example is the first time we took R to a child’s birthday party, once the kids started graduating from tea and cake and onto entertainers. I sat R directly under the nose of the entertainer, and sat next to him so I could point out anything he might miss. For an adult, the misdirection and horseplay is obvious and predictable, but we forget that our children are seeing all of this for the first time. When the entertainer held his wand behind his back while it flip flopped all over the place, complaining bitterly that he couldn’t find his wand ANYWHERE, looking out into the crowd of children laughing and pointing behind him, my R looked at me blankly. All he could do was follow the entertainers eyes and instructions, which were telling him nothing about what he should be focusing on. The children’s raucous laughter only made him feel left out, which to be honest-he was. Quick tricks with lightning fast fingers meant nothing to him, and fiddly characters looking out of windows and hiding back down again, met with cheers and whoops from happy kids, but confusion and stress from my own. After 5 minutes, he started misbehaving, and after 10, I took him out of the room. His speech delayed, I was moved to tears when he turned to me and said clearly, “I just couldn’t see that.” Nowadays, friends may be offended when I show up late to those kind of parties, bringing him for birthday cake and music rather than the sit down and watch portion of events. But it’s not something which can be solved by him sitting at the front, or another common answer, getting him stronger glasses.

5. Another common struggle is when something isn’t where it’s ‘meant’ to be. R, like I’m sure all VI kids, likes to make his visual field easier to navigate. That means that every single thing has a place. If it isn’t where he left it, even if it is 3 inches to the right, it may as well be in Siberia. As a toddler, he would wait for all the other kids to finish playing with a particular activity at nursery, so that he could put it all away and put it back in it’s right place, for fear of not finding it later. He will talk to me sitting on a particular chair, run off to play, and then run right back to the same chair to show me something else, stopping suddenly about half a metre away from it, because it takes him that long to realise I’m not there any more. If someone appears out of context, where he doesn’t expect them to be, he will not name them until they name themselves. If a person is where they ‘should be’ however, where he expects you to be, he might be able to wave at you from across the room, or maybe even respond if you motion him to come here without words. That doesn’t mean he’s being naughty the next time he ‘ignores’ you, it just means you caught him knowing what was expected of him or in a situation which he found visually easier. Maybe it was a familiar place, maybe he already walked past you and took note of where you are or what you were wearing, maybe he simply slept better the night before and it’s helping his sight today.

There is clearly no easy answer to “How much can he see?” but I don’t mind you asking. I know that it’s a complicated response, and I appreciate anyone who tries to understand it. The only comments I don’t know how to respond to are “Oh wow, he saw that Aeroplane!”  or “I’m sure he recognised me from across the playground!”  because yes, sometimes it may seem like I’m making a fuss about nothing, or that his vision is as good as any other kid in specs that you’ve met before. And some days it is. Which is why most of the time I love how no one has to treat him any differently from his peers. And I’m so proud to know that you can be happy for all that he can see and achieve. But if you happen to come across him on a day where he needs that bit of extra help, I’d really appreciate you knowing how to do that too.

Wobbly Wednesday is today! It is a day of fundraising for better understanding, support and research of Nystagmus and it’s sufferers.
To help, you can Text WWNN14 £ and the amount you want to donate to 70070 or visit https://www.justgiving.com/nystagmusnetwork/donate

The Lying Game

A Jason manford comment made me think recently. (I know, it’s surprising.)

The quote was a version of the following: That when an adult asks what he thinks happens after death he says he doesn’t know but probably nothing. When a kid asks the same, he can’t help but talk about heaven and angels and fluffy clouds.

And I was so grateful to have a faith. Not because I think I’m better than anyone else, or that my answer has more validity than yours, but because I believe in absolute honesty with my son. Don’t get me wrong, there are plenty of things he doesn’t need to know. But if you listen to their questions carefully, most children want an answer you can give in an age appropriate way. When a three year old asks where babies come from, the answer ‘Mummy’s tummy’ will normally suffice. When they point to a man sleeping rough on the street and ask why he’s asleep on the floor, your child probably won’t question you further if you tell them he doesn’t have a house. And if they do question further? Well then that’s ok too. I’m comfortable to keep giving information layer by layer until their curiosity is satisfied. I see it as a privilege actually.

But I wouldn’t know how to begin to look a child in the eyes and tell them that there is nothing else but this world. To tell them that grandpa has been buried in the ground and that’s it. If that’s really what I believed, that this world is all we have, that our actions are meaningless outside of the eighty or so years on earth we are given, I would not only be at a loss for answers to my children, but I think I’d find it pretty hard to get out of bed myself.

Why do good things happen to bad people? Why does tragedy strike the most worthy of us? Why do some people have to live with illness, or poverty, or heartbreak? The answer that the world is random, that things just occur for no discernible reason is just not good enough, even for me, let alone for an inquisitive child whose favourite word is why.

But truthfully, if I COULD look myself in the mirror and accept those facts as random and meaningless, I would try and explain those beliefs to my children too. We want to protect our kids from painful truths, so we try and sugarcoat things. I get that. But in my world, where I’m not even that comfortable with the tooth fairy, (unless everyone concerned is very clear it’s a game, and it’s all done with lots of heavy winking and tones of jest to make that really evident) I’m not interested in putting an icing glaze on the big issues.

I saw a forum conversation recently about how to explain death to a 3 year old. The answers were really helpful to the original poster, but I read the entire thread in my usual judgemental way, and was left unsettled when I finished. “We told our son that grandpa lives on the moon.” “We told our daughter that auntie Beth is a star now, and then we chose a star for them to look out for so they could wave at her.” “We told our kids that their great grandma moved to Australia, which is really far away so we won’t be able to see her any more. After all, why upset them?” “Our twins were only just three, so we just told them that grandma was feeling too poorly to see them – after a while they stopped asking.”

I don’t doubt that these answers cause less upset in the short term, and maybe by the time they realise you are lying to them, (because that’s what you’re doing, it’s not sugarcoating, it’s lying) the immediate pain of the persons passing is over, or they can deal with it in a more mature way, but what of your relationship with your kids? Their trust in you to be able to face the hard situations with them as well as the straightforward or enjoyable? It seems to me that when the real answers come out, all your kids have learned is that death and dying is something to be so afraid of that it’s better to make up a story than talk about the truth.

For me, death doesn’t need a sense of magic or fantasy. And the truth is, it’s a matter of faith pure and simple. At some point, you have obviously come to your own convictions about what happens after you die, so why not have the strength to share these with your child? I feel lucky to believe in heaven, but I would still start this important conversation with the disclaimer that “no one knows for certain what happens when a person dies but I believe…” As long as your child leaves the conversation knowing that the person who is gone isn’t in pain, isn’t sad, and isn’t scared, so they don’t have to be either, what are you worried about?

The meaning of death and dying, along with illness, sex, and any number of other words, are our responsibility to teach. They are brand new concepts to our children. They aren’t inherently scary words to be afraid of. They are whatever we want them to be. Do we want them to be a lie? Surely it’s our job to teach not only the meanings of the words, but also the emotional responses to these facts of life, in a clear and open way without relying on the quick fix of deception.

That’s how I feel today anyway. Ask me again when my boy loses his first tooth and I don wings and a sparkly pen to creep into his bedroom and retrieve it.

tooth fairy

And a very happy Jew year to you, too.

It’s that time of year again, and my newsfeed is littered with pictures of apples doing honey bucket challenges, and smiling families wishing everyone a happy and sweet new year.

For Jewish people around the world, this year has been pretty much the opposite of happy and sweet, and the situation in Israel has been foremost in all of our minds. The homes of the three boys who were taken and murdered earlier in the year will have empty places at their tables this Rosh Hashana, and many Israelis are still living in fear. But despite this, I have received calls and texts, messages, emails and even the odd card through the door, wishing me and all the Jewish people all the best for the year ahead. And it makes me proud.

Earlier this year, a teen evoked a small media frenzy, and a slightly larger social media backlash to a photo she took of herself at Auschwitz while on a class trip. The world erupted with anger at the ‘Auschwitz selfie’ taken at the scene of so much horror and tragedy, and that she had the nerve to stand smiling with a face full of make up at the site of murder and genocide.

And I knew at once why she did it. (Or rather, I knew at once why I would have done it. As it turns out, it was some kind of memorial to her late father, and she had none of the intentions that I jumped to conclusions over, but it got me thinking.) So here is why I would be proud to take an Auschwitz selfie.

I was 19 when I visited Poland, in the year of mourning for my dear father, and a few months on from my year living in Israel. I had probably never felt quite so close to God, and if I’d realised how fragile and transient that stage is, I would have appreciated it a lot more. I remember being told that concentration camps were a place of death, and it was right to be sad and to cry. But cemeteries, they were a place of life, a place to rejoice. If these people had graves, with names on, with markers or even headstones, that meant that someone buried them. Someone lived on after them to remember them, to place the memorial, to visit and to upkeep it. We were there now, reading these peoples names, wondering and imagining about their lives, and then most importantly, going home to continue our own, because of them and others of their generation and their bravery.

A selfie at Auschwitz? A smiling face amongst all that terror and death? I see it as a flag, a symbol of our endurance. After all, there are no smiling selfies of Nazis. Just last week, a Nazi of almost 100 years old was prosecuted for being an accessory to nearly 300,000 murders. But we Jews? We are still here, we exist, we live on. We smile.

And as I look over my newsfeed, at hopeful and excited faces and witty cartoons, happily taking the place of the videos of Hamas insisting Israel are driven into the sea, calling for the death of each and every one of the Jewish people, I can see life everywhere I look. It is our ability to look to the future, to believe in the strength of our faith and our homeland, and to smile in the face of terror that keeps us united. More than that, it is what keeps us alive.


Wishing a happy, healthy and successful new year to each and every one of you!

Overworked and Underpaid

We writers have a special ailment all to ourselves. Arriving without warning, with no hint to how long it’s going to hang around, and no hard and fast cure (although many old wives tales to try while we suffer) this is known as Writer’s Block. It attacks our inspiration, it stifles our muse, and leaves us with ineffectual fingers hovering uselessly over a keyboard, or nibbling absent-mindedly on the end of our pencils.

Once in a while though, something magical happens and an event occurs which causes the complete opposite of Writer’s Block. Writer’s UN-block if you will. It generally happens like this. You see something which is so obvious, that the words pretty much write themselves. A gift from the universe, an article fully formed in visual form in your minds eye, before you’ve even opened your laptop.

That happened to me this week, at a place which is well known for its inspiration to me, Soft Play.

But truthfully, once I got home, I realised that this is one of those cases where a picture really does speak a thousand words. And all I really needed was a title. So here we go. I had many runners up, but I find the beauty of my choice is that it can be read as entirely sincere, or as totally sarcastic and judgemental. I’ll leave you to decide which way I meant it. Enjoy, and you’re welcome.

Who says Dads nowadays don’t do their fair share? 

This looks like a totally unobtrusive place for a quick 40 winks..  I'm sure the 4 year old will watch the 1 year old... Zzzzz...

This looks like a totally unobtrusive place for a quick 40 winks.. I’m sure the 4 year old will watch the 1 year old… Zzzzz…