A Year Gone By

A little over I year ago I jumped into this blogging thing with gusto, cranking out 10 or so blogs in a couple of months. It seemed to get some reads, some interest, mainly from my friends. Lot’s of indifference, of course, you’ve got to expect that, but some nice comments too. I got some Facebook likes, and then…….I stopped. Why?

Because it got terrifying. On Facebook it gets a much, much wider audience than I would have by just staying on WordPress, which was exciting at first. Then a little intoxicating as I looked at the stats – people were clicking! But then self-judgement came in and it suddenly seemed unbearably self-indulgent, boring and well, kinda embarrassing.

So I stopped.. And I must say I now have an enormous respect for those successful bloggers with thousands, tens of thousands of readers, letting it all hang out. What amazing confidence, such lack of self-consciousness – opening themselves up to the judgement and the brutality of the internet. Because with all the love they get, there’s a whole lot of nastiness thrown their way. It’s a brave person who blogs for a living.

A couple of my lovely friends have told me to get onto it again, and after a somewhat turbulent 12 months, I’ve had an urge to write. Please feel free to bugger off now, this is me time.

The Last 12 Months 

We built:

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Our very grown up house. I think it looks like a winery. Actually it could be with the amount of wine going through our place these days.

Nothing to get excited about yet – it’s more or less a shell. We are about half way and any further progress will be slow unless someone wants to throw a lazy couple of hungey grand our way (PM me for bank details).  We chip, chip, chip away at it one tradey at a time. And to bring in the bucks to get it finished, Andy continues to work away, which frankly is hard on the family and our relationship. But eye on the prize – when it’s built he can come home, get a lower paying local job and we’ll be a family together living in our glam country home.

We sent:

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Our girl off to kindy. With a 1st of March birthday, we had the dilemma of sending her this year, at 4 nearly 5, or waiting till next year when she’s 5 turning 6. I agonised about it right up to the day she started, and then for the first half of 1st term. She is fine, she loves it, is making friends and is loving learning to read and write. I will always wonder if she’d have been better off if we’d waited, and I suspect she would have been. But she’s fine, she’s happy.

We changed:

My work situation. By far the absolutely best thing that has happened in the last 12 months is quitting my job as a part-time financial planner. I’m not sure Andy agrees, but he’s supporting it bless him. We have one kid, one shot at it, and I wanted to do it completely. I wanted to be involved in her schooling, be there for her achievements, her school life. As it turns out, I haven’t completely quit the financial services world and continue to do some contract work, but it’s in my time and I’m not bound to an office, sitting in a job that my heart wasn’t in.

I’ve never been busier, with at least 2 hours of driving a day – a MASSIVE downside of rural life is the driving that’s involved with a young family. Everyday into town and back out and in and out again. Or hang in town and have to kill hours while you could be at home working, or getting the house clean, or cooking a great dinner for the family. Tippi is keen to get the bus, and we’re working towards that, but it’s complicated with a child with anaphylaxis and putting a 5 year old on a bus trip for over an hour carrying her own epipens is a tricky obstacle to overcome.

We lost:

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My mum. In the lead up to mothers day last year, I wrote about mum and her battle with ovarian cancer. She was doing so well with it it seemed. She’d endured more chemo, but still it hadn’t made her sick – she was definitely off, but not super sick like you see cancer victims in the movies. Maybe she was just being brave, but she was managing to live almost a normal life. She did hate the chemo though.

My sister brought her family out from the UK for Christmas, and we although we didn’t know it at the time, we had our last time all together. Mum was quieter than usual, with stomach and bowel issues dogging her a little, and a bit of vagueness she called “chemo brain”. By New Years Eve she was back in hospital with a bowel blockage. It was cleared for a while, but it came back and she was scheduled for bowel surgery in February to – in her mind – fix it once and for all.

But it wasn’t to be. The blockage became inoperable and untreatable, nothing more they could do. By then she had barely eaten for a few weeks, weight was falling off her. “Take her home” the doctors said, “keep her comfortable, give her whatever she wants.”

So we did. Mum never really grasped the fact that she was terminal, right up until the last week when she went into palliative care. My sister came out, leaving her young family in the UK for weeks, we all spent weeks going to and from Sydney to nurse her and be with her and Dad. And then, finally,just before Easter, we were doing the bedside vigil as we had been for a week. She was so weak, unable to speak or move. We sat with her all day, then at the end of the day, we kissed her, hugged her, told her goodbye, we love her, it’s ok to go. Her eyes indicated that she could hear us, and she loved us too.

My sisters and I left Dad alone with her and went home to Mum and Dads house where we’d all been staying together. Dad came home soon after. We were shattered. Then, within half an hour of Dad leaving the hospital, they called. She’s deteriorated, it’s very close. Did we want to go back?

We talked about it and decided no. We’d said goodbye. She’d held on all day, waiting for us to go. This is how she wanted it, she wanted to spare us from the moment. We sat together until the call came, and when it did we hugged each other close and wept.

At Christmas time when we were all together, we never dreamed we would be burying her by Easter.

Fucking cancer.

Escaping, The Build and The Kid

 

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Yesterday was overcast and rainy all day, then suddenly the sun popped out for a few minutes in the afternoon and threw out an amazing light, the whole place was literally luminous. In the country, there is always something interesting and beautiful happening in the sky.

Escaping

I think it’s essential that primary parents or care givers get some time out now and then, it makes them a better parent. I had my turn on the weekend when I drove solo to Sydney to have lunch at China Doll at the Woolloomooloo finger wharf with 2 girlfriends. We’ve been lunching together three times a year for over 20 years. Our lives are quite different, so it’s pretty much the only time we spend together, yet we know each other’s lives in detail including all our secrets. This time, we hadn’t caught up for over a year, and I don’t think we drew breathe for the 5 hours we were together. It was also heaven to eat Chinese – we tend not to with a peanut allergy child – and China Doll is bloody yum and the people watching is second to none as well.

I like my wine too much to then drive 2 hours home, so invited myself to stay at another girlfriends house for the night. Three of us – school friends from the 80s – drank more wine, devoured a cheese platter and shared the familiar banter that 30-something year old friendships allow.

The Build

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The slab is down – the first milestone reached. Apparently there’s a lull now while the steel gets fabricated, and we should have a frame in a few weeks.

Mum

Thinking about Mum a lot. She had her routine, post chemo blood test which showed an increase in cancer cells, dammit. Then a full body scan shows something sinister lurking in her spleen. She has no symptoms, so no treatment required just yet, but the doctors advised them to bring their trip to Europe forwards, as symptoms (and therefore more chemo) are probably only 2 months away. So next week they are off to England to see their 4 grandchildren, and my sister and BIL for 6 weeks, and all the time Mum has to try not to be thinking “shit, I’ve got cancer”, and not be terrified any time she gets a bit of indigestion.

The Kid

Speaking of Chinese, am nervous about 2 firsts happening this week with Tippi our 4 year old child with severe allergy to peanuts, and what was once a severe allergy to egg that now seems to be diminishing.

A couple of weeks ago, Tippi’s preschool teacher called me aside to tell me they were looking at Chinese culture, and wanted to take the kids to the local Chinese restaurant for lunch. For most people with a peanut allergy, Chinese is unthinkable. I would never consider it, and when the teacher raised it my heart started racing, and tears sprung to my eyes as I thought of Tippi’s devastation at missing out. She just loves eating out, we do it quite regularly and to eat out with her friends would be a dream. In that moment, I decided I would have to take the day off work and keep her home so that she was not left at the preschool when all her friends were playing grown ups at the restaurant.

As it turns out, the owner of the restaurant has a peanut allergy child, so I was willing to listen, and long story short have decided she can go, and I will go too. Tippi is so excited. Me? I’m shitting myself. This is FAR from comfortable. But various things I wont bore you with have lead me to allow it – I will be there with 4 epipens in my handbag, and my stomach in my mouth. I’m cross with the preschool – at which Tippi has been since she was 1 – for putting us in this position, however I do acknowledge that they are incredibly careful with allergies, there’s not been once incident in over 3 years and they wouldn’t do it if they weren’t completely comfortable. The preschool director goes to this restaurant with her nut allergy son.

On the upside – maybe we’ve found a safe Chinese restaurant, not something I ever thought I’d find, certainly not in the Southern Highlands.

And then, next weekend Andy and I are both leaving Tippi with my mum and dad for 2 nights as we go to the Yarra Valley for a weekend of frivolity with old, old friends most of whom I’ve known since we were kids. This is the first time in her 4 years she’ll be waking up without either of us, she’ll deal with that, although will no doubt kick up a little fuss.

It’s the food thing that worries me – Mum is careful but has made mistakes in the past (that have been caught just in time, so no disasters) and is pretty terrified of the epipen. We’ll be doing a full training session on epipen use for the 1034th time, and after that it’s up to Mum. Outings will be the hardest part – they cant stay home for 3 days, and Mum isn’t used to ordering for Tippi when out. Pack her food, mum, I will be requesting.

Anyhoo, I’m determined to go, trust, and have a wonderful time with my husband and lifelong friends whom I see only every few years these days. Kids are left with their grandparents all the time, Tippi adores hers and at the ripe old age of 4, she’ll cope. Wont she???

So I tentatively step in to this week of fearful firsts and tell myself that it will all be fine, and it’s worth it. Don’t make a liar of me please Universe

How do you go leaving your kids? Have you been able to escape lately?

 

 

 

 

 

 

Let’s get a few things straight about food allergies and food bans in schools

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It’s Food Allergy Awareness week here in Australia, so it’s timely for a post from me on this very polarising topic. I have tried very hard to keep emotion out, and just be logical, but I’m afraid it’s impossible. It’s an enormously emotional and personal issue for me and all families dealing with anaphylaxis.

An aspect of being a food allergy mum I find difficult is the attitude some people have towards kids with allergies (and their parents) and the online war raging about food bans at school. There’s been plenty of blogs written on the topic and the comments that come up are breathtakingly nasty. This one here, also reproduced on Huffington Post here was particularly inflammatory and inspired a slew of highly emotional comments, blogs and articles slamming the author and defending the rights of allergy kids to have a safe environment at school. I’m not sure the author intended to imply that her kids birthday cake was more important than another kids life, but that is how the article was taken by many.

When I read the comments on posts like this I note that there is a lot of support out there, but  a lot of real hatred and resentment too.

So here I am, weighing in. Fortunately my audience is small, so I shouldn’t get too much hate mail, but I’m thickening my skin just in case.

1. “Kids with allergies need to learn how to manage them – when they get into the real world, no one is going to protect them there”

Yes, they do, absolutely. Let’s be absolutely clear here – the advocates for nut bans in schools are referring to infants/primary schools where kids are as young as four. As far as I’m aware, no one is suggesting food bans in high schools. These kids, including mine, are being taught each and everyday about management of their own allergies from first diagnosis when they were babies. When my daughter was 2 she sat at birthday party tables with the other kids frenzying on lollies, chocolates, fairy bread, cakes, sausage rolls and all other unsafe foods while she ate only from her own plate without complaint. Not once, not ever did she try to reach for other food or cry about missing out. At 2 she knew that it is what it is.

But these little, little kids are not immune to mistakes. They can get caught up in the moment, accept something they shouldn’t, and at school there isn’t someone watching them every minute of the day. A child held out something to my friends 7 year old tree nut allergic child to ask her if it was safe for her.  Before realising what it was she took it in her hands and ended up in hospital for 3 days. It was a muesli bar still in it’s wrapping.

2. “Nut bans create a false sense of security – you cant guarantee a nut-free environment”

I’m sorry, I don’t buy this one. Managing allergies for very young children is about layers of protection: keeping dangerous food out of reach is one layer of several in protecting from life threatening situations. Carrying epipens (or equivalent) that are accessible and in date, having staff trained to both recognise and treat anaphylaxis – they are all essential layers in keeping an anaphylactic child safe at school.

Of course there’s no guarantees of a nut-free environment, but it certainly helps if a five year old child with a peanut allergy is not surrounded by peanut butter sandwiches. If using the word “ban” although technically incorrect discourages a parent from packing a deadly food into their child’s lunchbox, then let’s keep using it.

3. “You have no right to dictate to me what I can and cannot put in my child’s lunch box”

True. I can only appeal to your sense of decency, to your desire to not have children get sick or worse in school. I promise you, if you had an anaphylactic child you would feel very, very differently. And if you don’t wish to see it from an allergy parent’s perspective, see it from your child’s. What do you think would be the long term psychological effect on your child if it was their food that put one of their classmates into anaphylaxis?

4. “Allergy parents are exaggerating, they are just helicopter parents”

No, actually we’re not. We’re just not. A trace amount and 15 minutes is all it takes. The tragic story of Natalie Giorgi here is just one of many demonstrations of how serious this all is. A girl educated and vigilant, a mistake bite spat out, her father a doctor administering 3 epipens couldn’t save her.

Emotional, yes. Tiger mums, maybe at times. But exaggerating? No. Just no. We are advocates for our kids who have a serious medical condition that they didn’t ask for. As for the helicopter parent thing, I hate that sometimes I have to be that. But only in situations where there is unsafe food around, and less and less now the older my daughter gets.

Apparently there are parents around that have not had their child diagnosed, and are acting on their own assumptions without medical advice.  Others that lie about being allergic to get out of eating a food they don’t like. Others that don’t get their children tested to determine if they’ve outgrown the allergy. Trust me, we get as exasperated over those things as you do. They discredit those who suffer genuine, serious and life threatening allergies.

5. “If it’s that bad, the child should be home-schooled”

I’m not  really sure how to respond to this. These kids are entitled to be educated at school along with everyone else. They are normal kids with a medical condition that can be managed with care. And home-schooling just isn’t an option for many.

6. “Why should your kids allergies mean my child cant have a birthday”

This is the title of the article linked to above. I think it was poorly chosen by the author, although it is inflammatory so it probably had the effect she was looking for.

I’m actually dead set against treats and birthday cakes at school, not because of allergies, but because of the growing obesity rates in Australia and most other developed countries around the world. We did not have cakes at school when I was there – this is a tradition that has crept in sometime in the last 20 years. Every kid having cake at school on their birthday adds up to a lot of cakes in a year. Celebrate with non-food rewards at school and save the treats for the weekend and after school.

7. “Why should I have to cater for your child”.

Actually you don’t, I’d rather you didn’t. All due respect, I don’t trust that you’ll get it right. It took me months, years to feel confident that I was getting it right, and I was motivated by keeping my child alive. Please don’t cater for my child, but don’t exclude her either. She can come to birthday parties, she adores them, but while she’s little I have to come too and if after talking to you about the catering I’m not comfortable that the food is safe, I’ll bring hers. I won’t ask you to change the menu. Other kids birthday parties are hard work for me because I stay up the night before making party food she can have, trying if possible to make it similar to what you are providing so she doesn’t feel too different. But I do it, because she’s my kid and that’s what we do.

Exclude the food, not the child.

To be honest, I’d be really grateful if you didn’t have bowls of peanuts lying around, or if you didn’t do egg and spoon races, but if you do, I’ll be there and we’ll manage it. I think when you see a little girl or boy’s sadness at being excluded you might change you mind next time.

8. “So we ban nuts – where does it end, do we have to ban eggs, dairy and wheat too?”

This is a hard one, and one where even the allergy community don’t agree. Many allergy mums wont agree with me here. I think we stop at nuts (peanuts and tree nuts). Why? Because they are the most common, the most deadly, the ones that generally don’t get outgrown and the ones that are not “staples” in the average western diet.

My daughter has been anaphylactic to dairy in the past, and she’s outgrown that now, but even if she hadn’t I wouldn’t be demanding a dairy ban when she goes to school next year. Raw egg is dangerous for her, but I wont be asking for a ban on mayonnaise. Tiny amounts of peanuts can kill. By school age many of the other allergies have been outgrown, but peanut and tree nut allergy is often for life. And nuts are not difficult to eliminate for 5 out of 21 meals and 10 snacks a week.

I do support banning cakes and other treats and junk foods from school for health reasons other than allergies (see No.7).

9. “My child will only eat peanut butter on his/her sandwiches.” 

Three words: Eskal Freenut Butter. It looks and tastes very, very similar to peanut butter, but is made from sunflower seeds.

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Make sure you write on the lunch packaging what it is so it’s not mistaken for peanut butter and gets your child into trouble, or thrown away. NOTE: Sunflower allergy exists but is not in the “Top 9” most common allergens. It may not be an option if there is a sunflower allergy at your childs school.

10. “These allergies weren’t around when we were kids”

That doesn’t mean they aren’t real now. Something is going on to cause it. There is research going on all around the world. There are theories, but no answers yet. We just don’t know. And please don’t tell me I am too clean and hygienic so my daughters immune system has gone whacky. Did you put your 3 month old baby in dirt to play? I rarely vacuum, don’t use many cleaning products, have dogs that lick, and live on a farm. It’s a theory, not an answer.

It absolutely is a hassle being mindful of allergies, I get your frustration. I have no choice on the matter, I do it every single day so I know all about it. And yes, you have a “right” to put whatever you want to in your child’s lunchbox.

But please if you can, just understand that allergies are now a fact of life, they are getting worse not better. Your children will always go to school with and have friends with allergies. It’s the new reality, and until there’s a cure, we need to accept it, adapt to it and keep these kids safe.  This isn’t a time for righteousness, its a time for empathy and acceptance.

Be frustrated at me, hate me if you like, but don’t hate the kids with allergies, they didn’t ask for it. They wish it away everyday. Oh and you know what – it’s the teachers that want the bans, they don’t want to be jabbing needles into kids legs, and all that hand washing is a time consuming pain in the rear.

To those many friends and family who are supportive, mindful, and empathetic and go out of your way to ensure my daughter is safe and included, I thank you and I love you.