I first came across the word ‘begat’ when I was a little girl.  Sitting through endless church services and looking for distraction, I would pore through my bible for words I didn’t know. In the Old Testament there are comprehensive family histories.  They list only the sons. But of course. Surely that isn’t where my feminism took root (or is it?).  They went on in variations like this:

And Canaan begat Sidon, his first begotten son, and Heth, and…

It’s not really a term we use anymore, but it is a useful word. The next time I heard the word begat (or a present tense version of it) was when I was a new Mum.  The plunket nurse was talking about baby’s routine.  She explained that “sleep begets sleep”.  The more sleep babies have, the more they want. And how the less they get the more and more wakeful, and therefore, harder to settle.  So I set about creating a better sleep routine.

And today, I added a new context to the word begat.   (Rude word warnings…)

Crap begets crap.

And so it was, that Crap begat Crap who

You know what I mean.  It never rains but it pours. Just when you think ‘surely nothing else can go wrong, I’ve had all the bad luck a person should get’ …a bird poops on your head, you jam your favourite scarf in the car door and rip a big hole in it, you stub your toe and miss a phone call from the radio station that would have won you a trip to Paris.

No amount of positivity works. Nope. Deep breathing is useless. There is nothing you can do but surrender to the crapfest and hope that somewhere down the line, the begetting will run out. And as my friend said to me this morning, it is okay to say “why me!?” sometimes.  I agree, but it is not easy when the kids are with me, to rail against the begetting of bad times. I’ve been trying to keep the self pity to my private moments.  The anger and the grumps. I’ve been trying to fake making it, so that the Universe might be tricked into laying off on the lessons for a while.  I am sick of learning lessons.

Universe? Take your zen-opportunities and go jump. Take your deeper meanings, your soul education, your wisdom bringing life experience.  I don’t want any of it. I’d rather life was easy and I could be shallow, thanks.

My mother-in-law is sick, she has advanced Parkinson’s.  My father-in-law is sick, we’re waiting to hear results from his recent tests to see if he’ll be having surgery or radiation therapy, or both. My brother just phoned to say something’s up with his liver and kidneys. And I spent this morning at a pre-admit clinic for the surgery I will have in August to remove pre-cancerous cells from my cervix.  It’s not a huge thing, but it is one thing too many.

I had to be there for 9am, so we were up and out of the house by 7.30 this morning, I had to first drop off my daughter and then my son both to the homes of two very helpful friends. And when I hopped back into my car to go to the hospital, it would not start. The lights were on, but nobody was home.  Glancing at the clock I realised that if I called for roadside assistance, I’d miss my clinic appointment.  I screamed then, in my car.  Let out a tiny bit of the anger that has been swirling around in my head. And I called a cab. After my meeting with the anaesthetist and the admissions nurse, an ECG and some bloods, I caught a cab back to my car. The bloody thing started first go.

See?  Bad times beget bad times.  I am sure my car wouldn’t start earlier, simply because I needed it to.  All this crappy minutae, on top of all the other stuff gets me down. My steroid trial is over and I feel myself sinking back into the quagmire, perhaps even more so after my immunologist yesterday made it pretty clear there was no way I would be eligible for IVIG. And all because I am seronegative, like 50% of patients with my diagnosis. I don’t even know if I can fight the fight for treatment any more. My steroid trial proved I have an AI aetiology, but now there is no treatment?! I can’t even explain how I feel about the shittiness of that. I feel like I am falling.

I know that my mind is a messy, noisy place.  I know I need help getting into a better frame of mind.

Let me know if you know how I can do that.

For now I am just putting it out there.  Crap begets Crap.

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When Life Gives you Lemons


Tonight at the dinner table, CC asked me why the fruit bowls are overflowing with lemons.  I explained that it is lemon season, and a dear friend had given me a bag from her tree.  Zed said, “Let’s make lemonade!” and I remembered.  That’s exactly what you are supposed to do when life gives you lemons.  So the girls got stuck into clearing up and Zed swept the floor while I made sugar syrup for the lemonade (1 cup sugar to 2 cups water, dissolved in a pan on the stove, set aside to cool).

I’ve been a bit grumpy with life lately. Tonight was a perfect antidote.
All you do is add the juice of two bowls of lemons to the sugar syrup.  The dilute the concentrate 2 cups to 1 cup of water.  Easy peasy, lemon squeezy!  Tart, but delicious!

Just like life.

Here are the pictures of our happy-making night of lemonade making.  🙂
Have you ever made lemonade?  Either the actual kind, or the metaphorical kind?





haha!  Love these kids.  CC, Bee, Zed and XiXi.   🙂

Peas Please

In our house we have an adventurous eater, and a fussy eater. Thankfully, both love peas!  Especially fresh peas, straight from the pod.  They always clamour to do the shelling so they can sneak those green orbs into their mouth while I am not looking.
(He he heh!  Little do they know what a nutritional hit they are getting while I pretend not to notice!)
Thought I would share some pictures with you of our latest pea shelling episode.  How pretty are peas?

We love them straight out of the pod, sprinkled over salads or steamed with a blob of butter.







If You’re App-y and You Know It

My mother guilt gets a good work out at this time of year… any time of year.  I feel bad that the kids might have had too much sugar indulgence (thanks Halloween), I’m less consistent in my parenting. And I notice with growing horror, just how much time they are really spending in front of screens.  It goes something like this:  The kids are bored/tired/arguing/wanting to do something that requires enormous amounts of mother-energy and glue.  It’s so very easy to send one off with the iPad and another to the TV. Sometimes screens can be such a seductive way to achieve peace in our house.  Is it like this in yours?  I feel like I must be a bad parent because the quiet message is out there, everywhere.  Too much screen time is bad for your kids.

Our nine year old has got her first laptop this year.  It was compulsory for school, but I have been surprised at how many issues it has created, already.  Until now we have shared the family iPad and I kinda liked it like that.  I could easily see what apps were being used because our small people never bother to close anything down, they just shut the cover.  Seeing their browsing history was also easy. And much to my own satisfaction, I am the Keeper-of-the-Password.  So I have lots of control of what apps are on our family device.  I have always had a fierce pride over the quality of apps my kids were using, the skills they were learning and the myriad of ways they could learn and consolidate their educational facts (and yes, all while simultaneously becoming quite possibly the fastest minion rushing subway surfing swipesters in the Southern Hemisphere)!

Yeesh, but the times they are a changing, aren’t they? The other night I took an online survey about media use.  I was asked how many screens we have in our family.  Er… twelve.  It shocked me!  That’s not counting those of our homestay students. That’s twelve between four of us.  That’s an awful lot of screen.  So I got curious about the issue of screentime.  Is it really bad for you? What are the official guidelines for screen time?  CSIRO to the rescue with the cold and uncomfortable facts. (‘Screen time’ includes all time in front of a digital device; a smart phone, tablet, laptop, computer or television).

“Where there is screen time, it is recommended that children have less than two hours recreational screen time per day. This includes watching TV, playing computer games and surfing the net for entertainment purposes. It does not include the computer time spent doing homework”.

Apparently the backlit nature of screens robs our brains of the natural daylight/nightime cues.  This can affect seratonin and melatonin production. Facts like this usually make me want to eye roll.  Except that seratonin is our happy hormone and melatonin is the one that helps us fall asleep.  Less happy kids who struggle to fall asleep?  Urk.  And just to horrify me further, studies show that kids who have more than 2 hours screen time in a day are more likely to indulge in other less positive behaviours; being less physically active, having less social interactions and snacking on more sugary, fatty and salty snacks.  Small wonder this group of kids is also more likely to be overweight. That is terrifying.

But  there is a little voice in  my head saying “What were those kids doing? Watching? Who is giving them these snacks? Did the research protocol encompass looking at the content of their screen time?”  Sorry.  It’s the teacher in me.  I taught a digital class for years, I am passionate about digital media and I like to make the distinction.  Just like not all reading material is great, not all apps, software, TV shows, games and browsing are great.  But some of it is truly great.  Some of it surpasses other modes.  Some of it increases our kids learning and multiplies their understanding, not to mention the opportunities to engage with activities and thinking challenges they love. The most comforting thing about being parents of our small ones, is that we are in a position to make informed choices about content, on their behalf.

I do feel sad when I see toddlers using a limited range of apps designed for slower learners than them (read: older humans).  Toddlers are uniquely positioned to learn really quickly, have you noticed how innately tech-savvy yours are?  What are they learning during their screen time?  It’s like making healthy choices about the snacks we offer our kids. Have you chosen carefully?  Popular apps are not necessarily the best apps to have and you can save yourself a whole lot of heartache once school starts if your kid has been engaging with important learning ahead of time.  Some apps are just like sweets, others are nutritious and thought provoking.  The same goes for TV.  Some of the shows available for pre-schoolers are really good for them, some are just like mental chewing gum.  So to my way of thinking, it is not just the time spent in front of screens that we need to be conscious of.  It’s what is happening (or not) in those brains while they are there.  

If you are interested in the research around the benefits of screen time, have a read of this article by Peter Gray, Psychology Research Professor at Boston College.  He says many interesting things and provides loads of research findings to suggest screen time is not, in fact, harmful to kids. But I particularly liked this comment.  It helped to assuage my anxieties (thank you Dr Gray!)  but also gave me some perspective for creating balance on the issue.

“I’ve never known a parent to limit their kids’ reading time. Why is it any better to limit TV or computer time than to limit book-reading time? Why do we worry about a kid’s spending maybe 4 or 5 hours a day at a computer screen… but don’t worry about the same kid sitting at school for 6 hours a day and then doing homework for another couple of hours?”. What assumptions are we making about the mental value of screen time? Shouldn’t we know exactly what they are doing on there, anyway? All this thinking about my parenting in relation to screens has led to these guidelines in our house.  I am hedging my bets.   Screentime is now subject to the following guidelines:

Screens are to always be visible to me. This is about safety and enables me to do a quick check that they are doing or seeing what we have agreed on.
Choices are made by the kids ahead of time about what they want to spend their recommended screen time on.  When it is TV, we look at the TV guide and record the shows they want to watch.  This has really helped them to decide on their favourites and not watch mindlessly as shows roll from one into another.

We are encouraging more physical activity and have pulled out of their cobwebby box the outdoor games; swing ball and frisbee, balls, water guns and scooters.  I have been surprised to see that if I get the games out, they will be played.
We are going out of our way to make friends with more people in our neighbourhood.  More playdates, more social interaction.  And the bonus of more physical activity for the kids.  There’s nothing like other kids to get your kids out and running around or jumping on the tramp.

I have audited the apps/ software/ games on all the various devices available to my kids.  They are allowed two ‘sometimes apps’ and the rest are ‘anytime apps’; good quality learning and consolidating stuff.

Do you limit screen time in your household?  Do you believe we should or are you more relaxed about the issue?  Do you have mother-guilt about screens or apps?  What do you think constitutes a ‘good’ TV show, app, game or piece of software?


How do you spell love?

I wrote this draft for the DINET (Dysautonomia Information Network) Newsletter.  I am one of their new parenting columnists.  This piece is about the opportunity Dysautonomia gives our kids to learn about empathy.  If you have been reading my blog, you may remember some of these anecdotes.  It is a US based publication, which is why I refer to myself as MOM!  Do you have any feedback for me?  I’d love to know your thoughts on this aspect of parenting with Dysautonomia.


It’s one of those mornings.  I know it the moment my eyes crack open and the light floods my eyes. There is  a flash of pain as my pupils struggle to assimilate the light. Too bright. The nausea grips my abdomen and somehow, I make it to the bathroom to vomit.  I am there on my hands and knees when I feel a small, warm, hand on my shoulder. My daughter.  She passes me a hair elastic.

“Here, Mom …to keep your hair back” she says, quiet, matter-of-fact.  She is a special soul, my girl.  Kind, thoughtful; empathetic.  I so wish that these traits had not developed through living with a sick Mom.  But that fact is something I can’t change. It just is. We are in this together. My son, similarly, has grown up with it.

Recently I was again, in the bathroom. For weeks I had been unable to poop.  But this day, success. My son raced into the bathroom.  “It’s good to poop!” he whooped, grinning and tossing me a roll of paper with an exaggerated wink. It might be a strange thing to celebrate, in average households, but not when dysmotility will drive you to hospital.  I shook my head in wonder. What kind of extraordinary grown ups will my kids be? They already know how to respond to the distress of others, not just how to articulate their concern but how to behave in a responsive, helpful way. They are matter of fact in their understanding that some things just require action. And they have the ability to see the funny side of things other kids might find horrifying. They just get on and do what needs to be done.  Practical, kind, funny kids.

Empathy is a skill that has been researched thoroughly by those in the fields of psychology, sociology and genetics.  There are actually genes that have been identified as being markers of hereditary empathetic tendencies.  But empathy itself can also be taught and learned. It is easy, as parents with Dysautonomia, to think about all the things we don’t get to teach our kids, about every lost opportunity or failed parenting moment.  But today, I want us to reflect on the gift our illness does give us and our children, in particular. A head start on how to be good humans.

We can look at our illness as the taker of so much. Or we can choose to remember that character is built on adversity.  Ours, but also that of our kids.  Have you ever considered that you look at the world differently since you became ill? Your kids will too. They will have a heightened experience of beauty, a deeper appreciation for relationships, a better understanding of why it is important to make the most out of every situation. They will have that, especially if we are modelling it for them.

Studies show that as many as 1.4 million children in the US, aged between 8 and 18 are caring for a parent, grandparent or sibling with disability or illness. The numbers are undoubtedly higher now.

We can’t change the fact that our children shoulder more burdens than many. But we can be mindful of what they need within the context of their child care-giving roles.  Here are three things we can make sure we are doing to help them.

Talk about it, but not too much
Make sure your kids have age-appropriate information about what is wrong with you. Don’t discuss it constantly, but make sure it is a natural and easy thing to talk about.  Be open to answering their questions. This will help them to reduce the stress and worry about it.  It also helps them to have the vocabulary to explain things to their friends and people in their circle. There might be scary situations that happen; like passing out in front of them. Make sure they have a clear plan for what to do and reassure them that your body is trying to do what it needs to do, but sometimes it doesn’t work right. My son is seven, he explains Dysautonomia this way: ‘something isn’t working right with how Mom’s brain tells her body what to do’.  And that is no more and no less than he needs right now.  If you talk about your every symptom with your kids, it can increase their emotional burden. Try to generalise. We talk trends rather than specifics wherever we can.

Identify a support crew
Caregiving kids need someone outside the immediate family that they can talk to about things. It is best if this person understands the situation thoroughly, is trusted and chosen by your child. They will need to talk sometimes about the difficult stuff. But don’t take that personally, it is a natural and healthy thing for children to be able to discuss things without feeling like they will hurt your feelings.  They need the freedom for that.  This support person/crew might provide time and activities that you can’t. If you don’t have a network around you, try contacting community organisations, churches or your child’s school.  There are organisations who can provide more information.

Respond to their emotional needs
We can do that. Many a deep conversation and tender commiseration has been given right here on my bed, with my kids in my arms. I am able to be present to their feelings. I can empathise with their problems. They both say they love having time with me here. They love that I have time to spend with them. Many well Moms are too busy for that. It’s a gift.  It reminds me of that saying


Photograph by Be CouperResources:
Statistics sourced from the National Alliance for Caregiving, 2009 ‘Caregiving in the U.S’.
Prior reading from the American Psychological Association.
Care Giving USA
Young Carers Australia
Carers NZ
Young Carers UK
Young Carers Canada

Paper: Global perspectives on young caregivers


Screen Shot 2014-09-02 at 9.14.36 am
“I hope you don’t feel trapped”.  I say to my hubster, blowing the steam off my cup of tea.  It’s the quiet time of the evening.  We are alone in the living room, we’ve been talking about our days.  We’ve discussed future proofing the next new car purchase against the possibility of needing mobility wheels for me. We’ve talked some more about IVIG and our optimism about it, we’ve discussed side effects and risks.  We’ve mourned the end of our channelopathy hopes.  It’s not an uncommon intensity of night time conversation for us.

And then, I see him objectively, for a split second.  This lovely big guy, greying around the temples.  So tired.  So sad.

“That’s exactly how I feel,” he says.
I panic when I hear that.  I think I was hoping for him to say “of course not” or “-whatever!”.  But I can always rely on him to be direct.  It’s his talent to cut to the chase.  My heart hits the floor. In my head, our conversation escalates to custody proceedings in T minus two seconds.  He wants to leave but he can’t.  Oh no!  He’s with me out of obligation?  I should offer to leave him.  Give him his freedom.  No!  I love him!
He watches me spinning into divorce infinity inside my head and reaches out his hand.
“Rach.  It doesn’t mean I want to leave you.  It doesn’t mean I don’t love you.  Differentiate. You are not your illness.  I don’t feel trapped by you.  I feel trapped by what is happening to you; to us. And I am not going anywhere”.
I stare at him.
He is extraordinary.

Here’s to all the partners.  To all the people shouldering big burdens just because they love someone who is sick. Here’s to the parents, the caregivers, the kids and the circle of people who surround us.  We are not sick on our own.  We are sick and the consequences of our illnesses are shared with anyone who loves us.  We wish it wasn’t that way.
We wish you weren’t trapped too.

Here’s to the ones who love us.  The ones who aren’t going anywhere.
You are beautiful.

Thank you.