Weekend Coffee Share – 8th March, 2021.

Welcome to Another Weekend Coffee Share!

Happy Birthday to my 17 year old son , and Happy International Women’s Day. I’ve just woken up to wih my son Happy Birthday, and I’m not planning on staying up for long, and my stomach feels like I’ve swallowed Draino and my back feels like it’s been run over by a truck. I could say, that’s the power of positive thinking. That that’s me looking on the bright side. Well, I am looking at the bright side because I’ll feel bettter after a bit more sleep. I might also feel better if I wasn;t trying to type with a chewed up tennis ball under my right wrist too. There’s also an expectant do parked in front of my chair, too. That’s Rosie and the other two, Zac and Lady, are parked right in front of the door. I don’t know whether they’re hoping I might actually levitate out of my chair to take them for a walk. If so, they’re dreaming.

Our gorgeous little man as a new born in hospital.

17 years ago today, I became a mum and my husband and I became parents. I don’t think we truly understood what that meant at the time, even though we knew their were huge responsibilities and sleepless nights with our little bundle. I think beyond all of that, our fundamental feeling was profound and overwhelming joy. I’d had an elective caesarean. So, there isn’t a lot to say about that, except Geoff still hasn’t recovered from the stress of trying to juggle the video camera, SLR etc and actually seeing the baby. It was exciting times. Our hospital was also still using cloth nappies. I have no idea why because i was 2004 and they’d changed to disposables by the time our daughter arrived just under two years later just so she could always be first with the birthday, although she was the youngest and clearly number 2.

Little Man and Mum in Tasmania late 2005.

Meanwhile, I used to taken International Women’s Day a lot more seriously and have even gone into the local march and was on the organising committee. Today, I think International Women’s Day can also be able having a rest, taking it easy, and making birthday cakes.

Last week, I ended up heading down to Sydney for my first medical specialist’s appointment since covid and in just over a year. This was a big milestone in terms of feeling safe and being able to take what now amounts to an almost negligible risk, and also in extending my personal freedom.

We went out for lunch in Kirribilli afterwards, and also walked down to the harbour to fully soak in the magnificent views of the Sydney Opera House and the sheer imposing grandeur of the Sydney Harbour Bridge which truly towers over the top of you their almost stretching a protective arm around like like a father towering over a small child.

Walking back up the hill, I spotted a pair of boots sitting on a street corner.

Not only that, the boots were around the wrong way and looked plain odd, which of course told a story they wouldn’t have told if they’d been around the right way.Of course, I have no idea what they were doing there.

Whose boots they were.

That turned out to be part of their appeal, and their inspiration.

Of course, I photographed the boots, and needless to say, I wrote a post about them, which I’d like to encourage you to read: https://beyondtheflow.wordpress.com/2021/03/06/boots-under-the-bridge/

After all, they made a perfect analogy for how we respond to people who don’t quite fit the norm.

So, how are things at your end?

Before I head off, I thought I’d just update out on the vaccine roll out there. Well, to start that story off, we’ve had over 42 days without any community transmission here in NSW, which is wonderful news, and further praise for our response to the virus. Without the imminent virus threat, we’ve been able to wait to get the vaccine through the proper government approval processes, which also means vaccination is only just kicking off here. Vaccination began on the 22nd February, and they’re still just starting to vaccination health and aged care workers who are in category 1a. We fit into 1b of people with health conditions, and last night I heard that we’ll be eligible from March 22nd. That’s only a few weeks away as along as all goes to plan. I still don’t know how I’ll go with getting the vaccine via my local GP. They have nothing written up about it on their web site, but I should have faith, shouldn’t I?!! I shouldn’t panic. Freak out or desperately long to have some peace of mind?!!

Well, what do I have to worry about anyway? It appears covid isn’t here and yet, when it gets out of its box, it truly takes off and as we all know, you can’t tell you or someone else has it and it turns out this early barely detectable stage is when it’s most infectious. It doesn’t do a lot to ease my concerns. However, I’m not really complaining about taking measures to stay safe, because I’m still here and a year ago I had a chest infection, breathing difficulties and was concerned hospital would be full of covid cases and it would be too risky to go. Thankfully, that never happened here, and friends of mine who are even more vulnerable than I, are still around. I say that not to show off, but to show what is possible. We should never give up on what is possible, because sometimes, it can actually come to pass, and the worst case scenario passes us by.

Humph. I’m not sure whether I should spend so much of our coffee time talking about covid. There’s so much more going on, but at the same time, i is having a daily impact on our lives. I’ve decided no to go to a physical Church service until I’m vaccinated, because people are singing and not wearing masks. Indeed, our Church has taken a stand against it because they feel the Church is being discriminated against when restrictions aren’t so stringent in other places, especially sporting arenas. However, singing has been shown to be a super-spreader. So, their decision counts me out. Moreover, when you’re having to make decisions all the time about wearing masks, hand sanitising etc, it’s hard to ignore covid’s omnipresence in our lives, and for that longing to boot covid out once and for all to reach fever pitch.

I hope you and yours are doing well and keeping safe. What have you been up to this week?

This has been another contribution to the Weekend Coffee Share hosted by Natalie the Explorer at https://natalietheexplorer.home.blog/

Best wishes,

Rowena

Evicting the Elephant from the Room!!

An elephant has been living in my room. It’s never had a name and it’s never shared its story but some time ago, it simply moved in and it hasn’t moved out, rudely bailing me up in my own home.

Ever since, I’ve been feeling like a teeny, weenie, terrified mouse scrunched up hiding in the corner too afraid to come out.

After all, how could a tiny, little mouse ever take on such a monstrous elephant? It wouldn’t even need weapons of mouse destruction. It could just sit on me and I’d be flatter than a pancake. I doubt you’d even find my shadow.

Obviously, confronting an elephant is a serious consideration and not something I’d file as an “irrational fear”.

However, costs are mounting and I simply can’t afford to indulge its freeloading consumption any longer. That elephant has to go and I will do whatever it takes to get it out!!

For many years now, the elephant in the room has been my auto-immune disease, which is inconveniently known as dermatomyositis. That elephant moved on now that I’m back in remission. However, as we all know, elephants are very sociable and have fantastic memories. So once you’ve entertained one elephant, word gets around and another one quickly takes its place. You don’t even need to serve peanuts.

While having your own elephant might seem amazing, they’re actually very hard work. It might be fun riding an elephant to work or using it to clean the car, water the garden and even to do a bit of heavy lifting. However, take a serious reality check. Elephants are actually seriously high maintenance!

After all, elephants not only eat and eat and eat and eat. What goes in, must come out.

Talking about what goes in, a handful of lawn mower clippings is hardly going to feed this insatiable beast. Elephants eat 250-300 pounds of food per day on average and in a zoo, a typical adult elephant eats 4-5 bales of hay and 10 – 18 pounds, or 4.5 to 8 kg, of grain. Annually, that’s more than 29,000 kg of hay and 2700 kg of feed per animal. Naturally, buying all this food puts a serious dent in your household budget.

An elephant also needs to be bathed and thery don’t exactly fit inside your tub!

Elephants also need to drink and in a drought-ravaged country like Australia, an elephant places an enormous drain on your resources. Their daily water consumption is 25 – 50 gallons per animal, or 100 – 200 litres. Let’s hope you’re not depending on a rainwater tank! I wouldn’t like to run into a thirsty elephant on the rampage!

Obviously, just satisfying the consumption requirements of an elephant, even a metaphorical one, takes an enormous amount of effort.

However, that’s only half the story and to be perfectly honest with you, that’s the better end of the story too!

Elephant Poo.

As I said, what goes in must come out and in the case of a herbivorous elephant…out and out and out!!!!!
An elephant defecates from 12 to 15 times a day, a daily quantity of 220 – 250 pounds. This adds up to a yearly quantity of over 85,000 pounds of manure, more than 40 tons per adult elephant. That’s a huge pile of dung in your room and can become something of a Tower of Babel rising right up to your ceiling and you really wouldn’t want to fall in!!

Yet, that’s not all that comes out either!

Elephants also produce huge amounts of methane gas. Properly equipped, a car could travel 20 miles on the amount of methane produced by one elephant in a single day. That also makes having an elephant in the room, a rather stinky proposition, well beyond the scope of even the strongest air freshners. Urgh!

So after exploring the barest minimum survival, “nothing fancy” requirements of that elephant living in your room, perhaps you, like me, can appreciate that it’s time to send that elephant packing.

No more being nice!!

Miss in hospital waiting for her endoscopy. So brave but she also loved having her own remote control TV!!

The current elephant in our room is our daughter’s health. She is struggling to eat and is seriously under weight. She’s 9 years old and eats less than 500 calories most days when she should be eating upwards of 1,800. Most of the time, she can only eat very small amounts and then feels sick. She also complains about bread and potato getting stuck in her throat and troubles with reflux.

You can just imagine the stress that we’ve been through having a child who doesn’t eat. She’s now 9 and this has almost been going on almost since birth. Well-intentioned multitudes have told me that they’ve never seen a child starve themselves to death but our daughter has certainly pushed the boundaries. It might just be the gastro bug that’s been going round or our increased awareness, but she seems worse over the last couple of weeks and is arriving home from school looking weak and off-colour but perks up with food and will eat something. At the same time, she’s a pretty active kid so it’s hard to understand where she is getting that energy. It’s been very perplexing.

Late last year, we took matters in hand and over the last couple of weeks she’s had a barium meal test, an endoscopy and a tube into her nose to check her throat. She’s been so brave and gone through this with courage and strength but even though I’ve had these tests myself, it’s awful to watch her suffer. My heart aches for her and I just wish I could simply kiss her and make her better! Yet, I can’t and rather than being the strong rock I’m portraying, I want to cry and cry and cry. Crumble apart like sandcastle being swept away by a sea of tears. A bit melodramatic, I know, but she’s my little girl…our princess!

So for us, dealing with the elephant in the room has meant documenting what she eats and after realising how close she is to running on empty, I’ve bought her some medical food replacement drinks to at least try to bridge the gap while we seek answers.

I know I probably should’ve been looking into her calorie intake before, but I’ve been trying to keep this low key. I don’t want this thing to evolve into an eating disorder and I wasn’t sure that teaching a child who doesn’t eat about calories was a good thing. The same goes with getting on the scales. I also don’t want her feeling bad about herself or thinking that she’s faulty in some way. I would love to be thin but the more I look into how she is, the more I’m noticing that she’s becoming like a car running out of fuel. Moreover, I’m also realising that whatever the elephant in the room might be, identification, classification and treatment are beyond my capabilities.

I don’t know whether my awareness has just increased but she’s seemed worse this last week. She’s come home from school really tired and lethargic a few times. Feeling completely confused, stressed and perplexed; I didn’t even know which doctor to call or whether I should go to emergency or what. I’m trying to limit her doctor’s appointments and so I needed to pick the right doctor out of the hat. After flapping around all week and getting some good advice from the pharmacist and some food replacement drinks, I finally rang her paediatrician yesterday. I was trying to get my story out and convey some sense of urgency but didn’t need to. She gave me an appointment this very Monday. The only thing worse than having to beg and plead for an emergency appointment is being offered one. Then, you know that your worries are really something to worry about.

At the same time, I am so relieved!! Whatever we’re dealing with, we are no longer alone. Our concerns are being taken seriously and help is on its way. Our paediatrician really is excellent and I know he’ll help us navigate whatever this is and find a clear path. We are also fortunate to know two people with delayed gastric emptying, who have been very helpful and supportive. I also expect we’ll be seeing a dietician and other health professionals who’ll enlighten us.

I’m sure that now we’re starting to expose the elephant in the room and reveal it’s true identity, it’ll either take off straight away or deflate from a 4,500 kilo elephant into a mouse-sized ornament.
I sure hope so!!

Thank you to all those of you who are supporting and encouraging me through this journey with our daughter. It is much appreciated and reflects so positively on the bonds of friendship forged through blogging and even though we have never met face-to-face, that we are connected, if not becoming good friends.

Love and blessings,

Rowena xx

Sources
http://www.elephantconservation.org/stay-informed/just-for-kids/

Why Stay Calm, When You Can Really Panic???!!!

Keep Calm and Carry On might work well if you’re a rock or the proverbial brick. However, if your passions are somewhat more easily aroused and your blood starts to boil and explode despite going to your happy place or bathing in the Pool of Siloam, welcome to the club. Feeling rather aroused, agitated and more of an Incredible Hulk than a Bruce Banner, I have tried going to my happy place of calm. Indeed, I’ve tried locking myself inside and throwing away the key. However, I keep returning to turbulent seas, which are much better depicted by  Munch’s The Scream. Indeed, if only I could scream, I’d feel better.

The reason I’m feeling all wound up and tense is that our daughter will be having tests next week to investigate some issues with reflux and being underweight. She will be having a barium meal and endoscopy to check things out. These tests aren’t difficult, traumatic or life-threatening and neither are the potential issues we’re investigating. Miss is largely well and energetic but she barely eats and is about half the size of many of her average-sized peers. If this is who she’s meant to be, that’s great. I would love to be almost that lean and she can be the real fashionista. However, there are a few ripples that concern me…as well as my gut intuition.

All the same, I’m still wound up and agitated about it all and feel like something sinister is running after me and I just want to whack it on the head and destroy it completely…a bit like Basil the Rat in the final episode of Fawlty Towers.  https://www.youtube.com/watch?v=mv0onXhyLlE

I’d love to put an ad in paper and get rid of my health issues.

Where is a good cannon when you need it?

Of course, it didn’t help when the doctor’s secretary called out of the blue offering me an appointment “tomorrow” and then the doctor telling me he can do the endoscopy next week. I know I said it was urgent before Christmas but after being in the deep freeze for so long and not thinking about it, suddenly it’s all systems go and I’m struggling to defrost. Despite my best efforts to self-calm, I am well and truly freaking out!!

You would probably imagine that after all my medical issues and treatments, that our daughter’s tests would be a walk in the park. I’ve had brain surgery twice, chemo, an arterial blood test. I have lung function tests where they even block off my breathing for a second or two. Hey, I’ve even given birth to two children, albeit via the zip. I also had blood transfusions every 3 weeks for 5 years where they probed around through dry river beds and often had a few jabs before they found a decent vein…ouch! I also had my teeth cleaned at the dentist lately, which was probably more painful than any of this. My teeth, like the rest of me, are over-sensitive.

Oh yes! When it comes to medical trials, I’ve definitely earned my stripes. I am very, very resilient!!

However, there’s a huge difference between being the patient and being the patient’s Mum.

No parent likes seeing their child experience any kind of discomfort or pain but for me, there’s also this sense of responsibility. An awful, sinking feeling that I’m leading my precious, baby lamb to the slaughterhouse, especially as we’re not even 100% sure that there’s a problem. Of course, that would be the ideal outcome. We don’t want them to find anything. However, that also raises the question of whether the tests were needed in the first place and whether I’m putting her through all of this for nothing.

If only I could add this to the barium meal, Miss might drink it.

I mean getting a child to swallow the barium meal when she’s been known to refuse to chocolate cake is going to be no mean feat. Indeed, Dad will be coming with us for moral support. It reminds me of an old ad for Quik we had as a child: “Drink it Freddy! Drink it!” www.youtube.com/watch?v=-P-OFW3ZDB4

Am I just being an overstressed, over-anxious Mum? Am I so used to being overweight that seeing ribs on someone else seems odd and verging on starvation just because I’m so well padded?

Moreover, while we’re on the subject of overly anxious parents, Munchausen by proxy syndrome (MBPS) comes to mind. MBPS, which is also known as “medical child abuse,” involves the exaggeration or fabrication of illnesses or symptoms by a primary caretaker. It was named after Baron von Munchausen, an 18th-century German dignitary known for making up stories about his travels and experiences in order to get attention. “By proxy” indicates that a parent or other adult is fabricating or exaggerating symptoms in a child, not in himself or herself.

However, when it comes to attracting medical attention, I don’t need anymore.

I don’t think hospital was on Dr Suess’s list.

Moroever, I’m with Dr Suess. When he wrote: “Oh the places we can go!”, he wasn’t talking about hospitals or doctors’ waiting rooms!

All these things aside, our daughter’s refusal to eat does put quite a lot of added strain on family meals. Under duress, she’ll eat a Weetbix for breakfast. For years, her sandwiches have come home from school untouched, day after day, year after year. She eats an amount of food the equivalent to two match boxes for dinner and often complains about feeling full or sick. Even as a baby, she refused to eat and her weight has hovered around the bottom 5-10% most of her life. The fact that she has remained on the same trajectory and is relatively healthy and active are very encouraging but there’s still this nagging doubt.

I just need to make sure. Know I have covered the bases but not put her through exhaustive, unnecessary testing. Despite my uncertainty, I do think that when you have concerns as a parent and that uneasy feeling in your gut, you need to put some trust in your own judgement and intuition. Investigate. Ask questions. My daughter’s doctor also thought there was enough evidence to take the next step and refer us on. After all, these symptoms are concrete, measurable and aren’t the product of my over-active imagination…the stuff of a medical, fantasy novel published by Hypochondriacs Anonymous. To be honest with you, I’d much rather be a hypochondriac than really be sick.

To some extent my approach, has been informed by my own experience. When I was around 25, I was diagnosed with Dandy Walker Syndrome (DWS), a variation of hydrocephalus or fluid on the brain and had brain surgery to insert a shunt to treat it. Our best guess explanation for DWS was my difficult birth. There were times where I’d had various tests and we came close to working things out but we always missed the next definitive step, which would have given us the answers.

I have often wondered how different my life would have been had the Dandy Walker been diagnosed as a child. Growing up, I always felt “different” and I think I always knew there was something and I really did try to work out what was going on. I turned to psychology to try to unravel these inner mysteries when in fact, the problem was organic, structural and all in the plumbing. I was teased and bullied and all but destroyed at times and it would have been helpful to have understood what was going on. Since I had the surgery, my coordination also improved and I could have been spared a lot of heartache.

On he other hand, I was very independent and  I traveled quite a lot with that harbour in my head. I traveled quite a lot within Australia, usually travelling on my own but meeting up with others on the road. All this travel culminated in a trip to Europe in 1992, after my parents gave me a 12 month open ticket for my 21st birthday. I stayed in Europe for 9 months, mostly living and working with a family in Heidelberg in Germany. To be quite frank, I doubt my parents would have funded that if they’d known about my head.

No! No! No! That would never have happened. I would have been way too precious. Wrapped in more layers of bubble wrap than a fragile porcelain doll, I would have been protected, sheltered and to be honest…as stunted as a bonsai. Not that all parents of children with disabilities closet their kids and when they do, perhaps not without due cause but having a shunt in your brain is a fairly major thing for a kid and they are renowned for blocking and being temperamental…particularly in years gone by. We’re not talking about having a broken toe. Brain stuff is at least potentially major.

I know my life would have been very different.

Perhaps, it is this awareness that even serious medical conditions can bubble along seemingly under the surface for many many years while only causing intermittent trouble, that has caused me to be vigilant with my kids’ health. That’s not to say that intuition is always right and that your worst fears will turn into reality but it is a reminder. Serious health complications can have relatively subtle symptoms (at least at the start) and prevention and early diagnosis can be life-saving.

That said, as I head towards our daughter’s medical tests, I am hoping that it’s all nothing or just something simple and easy to accommodate. I’d much rather be an anxious mother than having a sick child. Wouldn’t you?!!

By the way, thank you so much for listening and I would welcome your thoughts.

xx Rowena

PS I’d like to share Ronovan’s post on boosting your positivity. I need to revisit this myself: https://ronovanwrites.wordpress.com/2015/02/18/positivity-negativity-be-gone/