Tag Archives: gastroparesis

Our Tenacious Little Dancer.

“I think she is growing up, and so begins to dream dreams, and have hopes and fears and fidgets, without knowing why or being able to explain them.”

Louisa May Alcott

Today, our beautiful daughter suddenly grew a couple of inches taller when she stepped into her very first pair of pointe shoes and she was up en pointe. This has been something she’s been aspiring towards ever since she first started ballet as an almost four year old eight years ago. Indeed, I remember a time when she was very small and she stood in a couple of plastic cups to get the look (and a bit of added altitude). In hindsight, I probably should’ve got those cups off her feet and been more safety conscious. However, she was so happy, and it was too good a photo opportunity to miss.

In typical Rowena fashion, this pointe shoe fitting demanded a bit of pomp and ceremony. Indeed, quite frankly if she wasn’t twelve years old, I would’ve popped the  champagne, even though I’m not that partial to the taste. Even as a child, I was mesmerized by the theatre of it all what with popping the cork and all those bubbles shooting out like stars across the room with unbridled joie de vivre. Bubbly encapsulates the excitement, the celebration the exquisite preciousness of the moment in a way that nothing else does. You don’t even need to drink the stuff.

However, instead of a champagne celebration, we met up with my Mum for lunch and coffee and then the three of us headed off to Bloch’s for her 3.00pm appointment. By the way, our daughter wasn’t the only young dancer who had to get that very special pair of first pointe shoes on the very first day of the school holidays. The fitter had been flat out all day and we were something like her 11th fitting. Yet, she seemed just as excited for my daughter and for us as the first. As a dancer herself, she knew what this moment was about and really helped to make it special and informative. If there’s one thing I now know about pointe shoes, it’s not to get them wet. I also confess that I’ve also seen my daughter’s feet in a new light.

Helping en pointe BW

We really appreciated the care and assistance we received at Bloch’s Hornsby with the shoe fitting. Naturally, the staff are dancers themselves and I felt that our fitter was handing down the mantle to our daughter. They actually gave her a certificate. She’d joined the club.

Our daughter has been learning ballet for eight years now and she’s worked very hard for the last 12 months doing all sorts of stretches to prepare her feet and toes. Indeed, she needed to have a physio consultation before she could go for her pointe shoe fitting. By that stage, her teacher already knew she was ready. However, she likes her students and a parent to be aware of the physicality of ballet and how the muscles bones and other bits and pieces come together to to produce your swan. Through being more conscious of this physical element and looking after your body, dancers can help prevent injury, wear and tear. Given the difficulties I have with movement, I have appreciated these physical realities through a different window, which has given me an insight into the physical demands of dancing. That it isn’t only about costumes, makeup and hair. After all, injury and being on the sidelines is not just an inconvenience for a dancer. It can mean The End, or simply the end of  dance as they know it. When dance is your passion and raison d’etre, that can feel like surviving your own death. (I’ve gone through that with my own battles.)

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There was so much to learn at her fitting and you can see here that Miss is very focused taking it all in. She hasn’t been swept away by the excitement of it all.

For every young dancer along with her birth and dance families, getting their first pointe shoes is rightly an incredible achievement and time for celebration. While you might see those beautiful pink satin pointe shoes and immediately think of the likes of Degas and his dancers and the professional stage, these young girls are still within cooeee of being the “awkward duckling” who started out. There were no guarantees back then and for us, there were  certainly no expectations. I just dropped her off for her first class and the mysteries of dance went on behind closed doors until open days or the concert. From where I sat, ballet was just a part of childhood for a little girl. A bit of fun. An activity. It had nothing to do with my dreams, unless it came to taking her photo. Now, that was something I understood.

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Edgar Degas, The Little Dancer. She reminded me of my daughter until I found out she was quite distorted.

Although I wasn’t so conscious of this at the time, seeing Miss in her pointe shoes really brought home what we’ve all been through to get her there. I don’t think anybody’s road is easy, but everybody’s road is unique with their own particular reasons why getting into those pointe shoes is a personal miracle and a triumph over adversity. Most of you will be aware that I live with a life-threatening auto-immune disease which affects my muscles and lungs. However, Miss has a rare digestive disorder called gastroparesis, which particularly flared up a few years ago and she was barely able to eat. Indeed, she was struggling to get to school or to ballet and she missed months of classes.

Amelia at the san

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

As you could imagine, it was very difficult to know quite how to manage the situation. We were very concerned about her actual health and it would’ve been quite a logical decision to cut out dance to focus on her schoolwork. Yet, we’re fighters. We might be holding onto the cliff face by our fingertips and kicking and screaming, but we don’t give up. Indeed, it was only after missing a couple of terms and feeling like all my motivational strength had run out, that I truly started thinking it was time to pull the pin. Her teacher was also very patient. However, dancing is a team sport and it’s hard to manage a team on three legs. So, with the end of year concert rapidly approaching, it was crunch time. As a possible way forward, her teacher suggested that her friend came over and they practice the dance together. I’m so thankful because her friend saved the day. That was the turning point. She picked up the dance. Was in the concert and was back on her dance feet again. Then, the following year, she had a friend at her new school who was a passionate dancer and she also a tremendous encouragement. By the end of that year, Miss decided to audition for Dance Team at the studio and was accepted. She hasn’t looked back and with the incredible training and support from her teachers, is growing from strength to strength. Clearly, with all these dance angels working flat out with her on multiple fronts, our daughter must’ve been destined to get up on those pointe shoes today. It’s been a real team effort.

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Afternoon Tea.

By the way, while we’re talking about life lessons from the road, organization has been another hurdle. While other girls have managed to get to class with a perfect ballet bun and all components of their uniform, all too often Miss could only find one ballet shoe and her ballet bun could well have been reinterpreted as a bird nest of its own unique variety thanks to her superfine hair, where getting the knots out produced spine-chilling screams. Yet, somehow or another, all of this has mostly become a thing of the past.

After explaining some of the hurdles we’ve had to overcome, perhaps you’ll understand why I thought this moment might never come and the tears of joy I held back while we were there as I felt like the happiest Mum alive. Back when our daughter was struggling, I remember seeing a group of older girls who’d just got their first pair of pointe shoes. They were exuberant and clearly this meant the world to them not only as individuals, but as a group. I felt so privileged to catch a glimpse through this keyhole and get an insight into just how important this moment is to a young dancer and what it would mean to my girl. Whatever happened with my daughter and dance, I wanted her to hang in there at least until she’d gone en pointe and  been a part of that bubble. Not for me, but for herself. I could could sense something in her soul, which is becoming more apparent with every passing year. Dancing is her thing. It isn’t her only thing but it lights her fire.

So, now we find ourselves at a new beginning. Once she goes en pointe, she has to learn to dance all over again. Although it is tempting to try to fast forward and think about where all of this is heading, he’s only 12 years old. The world is her oyster and there are still so many forks in the road. She doesn’t need to choose one yet. However, it can be difficult to maintain a balance and keep an open mind when you fall in love with such an alluring juggernaut that you could easily sell your soul to dance in ballet’s fire. Somehow, we just need to keep a level head and maintain a balanced path…at least for now.

After the fitting, she went to stay with my parents for the week taking her beloved pointe shoes with her. If they weren’t so precious, it wouldn’t surprise me if she slept with them under her pillow or close to her heart. They meant the world to her and I’m so proud of her for all she’s overcome, her hard work, dedication and most of all her passion for dance. I am also very grateful to all the people who have helped her along the way, her teachers, my parents but also very much her friends who have been so supportive and encouraging and that’s not something you hear much about in the dance world. She has some incredible dancing mates.

That is also why I am sharing our journey via the road less travelled for our daughter to get her pointe shoes.  That parenting isn’t all about bragging rights and showing off about your kids’ talents. It’s also about sharing about the hurdles and difficulties so other girls don’t give up along the way because they feel they don’t measure up. Aren’t good enough without giving it all they’ve got. I belong to the Muscular Dystrophy community and not everyone can get up on pointe shoes or dance in a conventional sense. However, that doesn’t have to stop you from finding a way. Indeed, I’ve done some adult classes myself and have my own pair of pink satin ballet shoes. I think it helps to understand that you’re not the only one who might be going through difficulties and wondering whether to persevere with dance or whether it’s all worth it. No one else can answer that on your behalf. However, we are meant to encourage each other and dance is such an exhilarating experience. It’s worth fighting for.

Do you have any dance stories you would like to share? Or, a story of triumphing over adversity? I’d love to hear from you.

Best wishes,

Rowena

PS I have a strange sense of humour. However, after hearing about how her pointe shoes have paper mache in the toes and are very sensitive to moisture, including sweaty feet, I found I found a great deal of humour in this quote:

“Growing up, I had only one good pair of shoes. So on rainy school days, my mom would slip plastic bread bags over them to keep them dry. But I was never embarrassed. Because the school bus would be filled with rows and rows of young Iowans with bread bags slipped over their feet”
Joni Ernst

So, if you see a dancer with plastic bread bags over er pointe shoes, you’ll know that’s our daughter!

The Rugged Road to School Spectacular…

Nothing makes my stomach churn more than yet another parent gushing about their progeny’s achievements. Indeed, this chunderous gushing of  superlatives has almost had me hospitalised in the past. Just call me Mr Creosote from Monty Python’s Meaning of Life. A bucket simply isn’t big enough! https://www.youtube.com/watch?v=aczPDGC3f8U

Film and Television

Mandatory Credit: Photo by Moviestore Collection/Rex / Rex USA (935963a) Monty Python’s The Meaning Of Life, Terry Jones, John Cleese Film and Television

However, just because someone is young and just happens to be my daughter, does that mean I should repress my pride and hide her under a proverbial bushel? Especially, when my pride has nothing to do with her singing ability but is more about her incredible tenacity and persistence in the face of formidable adversity?

Of course not!

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Miss Spectacular

After spending a few months under the medical microscope, Miss performed at School Spectacular last weekend, singing 30 songs as part of the 1,500 voice Combined Choir. It’s a privilege for anyone to appear at School Spec but after being diagnosed with severe vocal nodules on top of a rare digestive disorder, Miss was definitely overcoming the odds. Indeed, after undergoing months of voice therapy, it’s been a rather rugged road to School Spectacular!

Around April this year, Miss was diagnosed with having severe vocal nodules, which are basically blisters on your vocal chords. Her voice was very squeaky and she was missing letters in words and it difficult for her to talk, let alone sing. These nodules were caused by vocal abuse (ie screaming at her brother and less often mother) and stomach acid. The treatment involved intensive speech therapy and regular exercises and it probably won’t surprise you that routine isn’t our thing. We wanted that magic pill…the instant fix but without any alternative, we had to rise to the challenge.

Amelia hospital

Miss in Hospital

At the same time we found out about the vocal nodules, Miss was also diagnosed with Delayed Gastric Emptying, a rare disease where her digestion is very slow and she doesn’t feel hungry. Consequently, she doesn’t eat. She also gets stomach aches, reflux and all sorts of symptoms from not eating. She has been seriously underweight and had real trouble staying alert. She was looking pretty sick for awhile there before we found some food replacement drinks, which had made quite a difference to her weight and equilibrium.  She’s also been prescribed an appetite stimulant. You can just imagine what her moods have been like when she’s not eating at all! It’s been a serious concern.

While these problems weren’t imminently life-threatening, she went through a battery of tests and even a hospital admission in a very short period of time. While she didn’t say it felt like the end of the world, you could see those thoughts written across her sullen face. What with having a chronically ill mother and knowing what I go through, she was no stranger to what living with a chronic illness entails. She knew that when it came to life’s game of Snakes and Ladders, she’d definitely landed on the snake and wasn’t happy!

snakes & ladders

Snakes & Ladders…life’s ups and downs.

Fortunately, sometimes those ladders can equally be just around the next corner…

Of course, when I heard how bad her voice was, I was absolutely devastated. It was the vocal equivalent of being told your child is on the verge of spending their life in a wheelchair. Although it wasn’t going to kill her, for a kid who loves singing, drama and is thinking of becoming a teacher, this was serious stuff.

Of course, I knew it could be a  lot worse but pointing that out when she was devastated, doesn’t help. She needed hugs,  time and if she just stuck with her exercises, everything would be absolutely fine! Denial can be a wonderful thing!

Knowing how hard it is for anyone to stick with such exercises, her speech therapist dangled the School Spectacular carrot in front of my wide-eyed daughter. She even spoke to the teachers at school to develop an integrated, team approach. This was really inspired thinking because our Little Miss is extremely strong willed and that will doesn’t always comply with requirements.

Her voice was so bad that she was told that she needed to rest her voice. She wasn’t allowed to sing for at least 3 months and had to mouth the words at choir. Of course, this was like shutting a wild bird in a cage but she complied. I love singing myself so I know what that meant.

Amelia Gretel on stage

Miss on Stage Performing Marta with her Musical Theatre Class.

That was until it came to auditioning for the role of Marta, the second-youngest Von Trapp child in the Sydney production of The Sound of Music. Miss does musical theatre and she came home from class with a web address to apply for auditions

As far as I was concerned, getting the role was the equivalent to flying to the moon. Of course, you superficially encourage their dreams but you don’t even need to look deep in your heart to know that this is a dream and not part of the real world. It’s your job as parent to encourage such dreams while gently bringing your child back down to earth safely without smashing into a thousand pieces. After all, we all know what happened to Humpty Dumpty!

Knowing how much the vocal nodules were affecting her voice, I knew she didn’t stand a chance and subtly tried to encourage her to audition for something next year. Next year when, of course, everything would be better and “just fine”.

Of course, she wouldn’t hear of it and burst into tears: “But Mummy! I’m the right height now and I’ll never be the right height ever again!”

As a parent, you come to appreciate when you’re beat. I filled out the application and attached a photo and pressed send. Meanwhile I developed a nasty bronchitis and was on standby to go to hospital when the email arrived. She had an audition.

https://beyondtheflow.files.wordpress.com/2015/09/dsc_5234.jpg

Practicing for her audition.

 

 

She didn’t receive a callback but she was stoked about the audition and a seed was definitely planted.

Swings and roundabouts, missing out on Sound of Music meant she could still do School Spec. Yes! Miss and her entourage were starting our way up the ladder again.

You can read about School Spectacular here: https://beyondtheflow.wordpress.com/2015/12/01/introducing-school-spectacular/

Among the 30 songs our daughter sang with the Combined Choir, one had a particular resonance:

 “Climb every mountain,

Ford every stream,

Follow every rainbow,

‘Till you find your dream.”

Rodgers and Hammerstein, The Sound of Music.

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Sound of Music Tram near School Spectacular.

It almost brought tears to my eyes knowing just how far she’d come and what it meant to her not only to be able to sing in the shower again but to perform in School Spectacular. As she said:

“Last year, being in School Spec was my dream and it came true!”

Of course, achieving such dreams doesn’t happen single-handed and our choir had an impressive support crew headed by the choir teacher, exhausted parents and I’m also going to mention big brother who has been supporting his sister’s creative dreams without getting jealous and has simply encouraged her. Thanks to her friend’s family, Miss also enjoyed fabulous accommodation across the road and was spared a lot of travel. Geoff and I were also incredibly thankful for that. It was great to give the “taxi” a break.

I hope our daughter’s story might encourage you to overcome your hurdles and reach for the stars. That the seemingly impossible can become a reality and even exceed your expectations.

So, even though I’m risking joining the chunderous brgging parents collective, in so many ways our daughter’s journey to School Spectacular has made her a  hero:

Hero

There’s a hero
If you look inside your heart
You don’t have to be afraid
Of what you are
There’s an answer
If you reach into your soul
And the sorrow that you know
Will melt away…

And then a hero comes along
With the strength to carry on
And you cast your fears aside
And you know you can survive
So when you feel like hope is gone
Look inside you and be strong
And you’ll finally see the truth
That a hero lies in you
That a hero lies in you
That a hero lies in you

Mariah Carey

https://www.youtube.com/watch?v=0IA3ZvCkRkQ

If you have written any encouraging posts about overcoming similar difficulties, please leave a link in the comments below.

xx Rowena

 

Parents in the shadow of illness.

If you have been reading my blog this year, you’ll know that my daughter was diagnosed with a rare digestive condition, called gastropresis. This post was written by Cassie, who has the same condition xx Rowena

Indisposed and Undiagnosed

Thank you for sending through your ideas for my next post.
It was extremely hard to choose from, until I came across a response from a mother, and I knew in my heart that this was the one I had to write.
We hear stories of the teenagers and children going through Chronic Illness, Depression and Anxiety, but rarely do we hear from behind the scenes.
So, thank you to https://perfectlyimperfect05.wordpress.com/ for choosing today. I will try my best to do this topic justice.
Please take the time to read her inspirational work.


The first time I was seriously ill and hospitalised, I was about eleven or twelve. I had been complaining of stomach cramping for weeks, nausea and bloating. My parents just assumed it was a mild stomach bug. They pushed it aside. I woke up one night, though, on the floor screaming and my parents rushed me to the emergency…

View original post 1,594 more words

Finding A Magic Pill.

Good news! Our daughter has mild gastroparesis or delayed gastric emptying and no signs of coeliac disease or diabetes…phew! She has been prescribed periactin, which as far as I can see through a quick Google search, can stimulate the appetite in underweight people. I am also looking at her diet to boost her intake and she’s also having a food replacement drink.

So it’s looking like I’ve got all the bases covered…including having to grind up the tablets at the moment. She had a really good try at swallowing it but she just couldn’t even swallow half or quarter of a tablet. I was like this as a kid myself and I remember my poor mother grinding up tablets and mixing them with honey. It seems what goes around comes around.

I don’t think we could have had a better outcome from yesterday’s appointment. I was stoked, relieved, so very thankful and would have been doing the Happy Dance if I wasn’t feeling physically and emotionally drained. I still feel like I’ve been runover by a steamroller or squashed by that very heavy, metaphorical elephant. It was a long day and I did the 1.5 hour drive home admittedly via the deli in Wahroonga where I procured some top shelf gourmet mental health food: Double Choc Brownies and a gooey cinnamon bun. Cinnamon scrolls are a rare breed in Australia or at least gooey ones like this are. Wow, it was good!

Driving home, in some ways, the whole scenario felt like a huge non-event. Oh! It’s just mild gastroparesis and we were told there was essentially nothing they could do to treat it but we have this pill. Yet, this doesn’t negate that she’s underweight, a picky eater and was once again feeling sick after breakfast this morning. It doesn’t cancel out the extreme stress we’ve had with a child who can’t or won’t eat and ends up with low-blood sugar and gets cranky. I’m sure this isn’t going to magically go away by just clinking my fingers, either and it hasn’t!!

My kind of journey: time traveling back to the 1970s with Qantas flying over the Sydney Harbour Bridge.

My kind of journey: time traveling back to the 1970s with Qantas flying over the Sydney Harbour Bridge.

All of this is what people call “a journey”. However, when I think of going on a journey, doctor’s surgeries, hospitals, waiting rooms are certainly NOT on my itinerary. No! That’s not a journey. It might have its moments of sunshine but it’s still a perplexing quagmire and “journey” just doesn’t convey the intensity of those moments when bad luck, despair, pain and sorrow converge and attack. The bullets are flying. You’re madly scuttling for cover…any kind of cover just as a bomb goes off. Although you emerge from the battlefield unscathed without a scratch on the outside, you’re certainly NOT at the Teddy Bear’s Picnic either!!

If only life could be a continuous Teddy Bear's Picnic!

If only life could be a continuous Teddy Bear’s Picnic!

Here’s The Teddy Bear’s Picnic performed by Bing Crosby: https://www.youtube.com/watch?v=IrvkHAxnjzI

Don’t get me wrong. I’m as positive and the next person but it is what it is. Even when you come through the battle unscathed, there are still those invisible scars on the inside because you know what might have been. It didn’t happen but you went there in your mind and you knew. You saw. You anticipated but somehow found a U-turn.

So getting back to the elephant in the room…

It’s still with us and hasn’t gone away but it has very much shrunk and I hope become more manageable. As we left the doctor’s surgery, I picked the much deflated elephant off the doctor’s desk and brought it back home and it’s now sitting in my china cabinet alongside my vintage teacups. The elephant in the room is no longer looming overhead and intimidating me like a stand over man. It’s shrunk back down to size and I’m so relieved.

My next challenge after all these tests and appointments, is to convince our daughter that the elephant’s under control or at least will be in time. She is very much in the early stages of coming to terms things and this process is intensified through lack of food. As much as we might want things to go back to “normal”, she needs to be given the the time and space, understanding, compassion and acceptance to deal with this in her own way and I’m pretty sure that once she does that, she will start getting better too!

After this afternoon, I say: “Bring it on!!”

Thanks once again for your concern, encouragement and support. It means the world to me!!
xx Rowena

PS: Bex Powders used to be known as “Mummy’s Little Helper”

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!

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.

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!!

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/

Catching the Palm Beach Ferry – the Perfect Antedote for a Rough Week.

Last week might not have been the worst of times but it certainly wasn’t the best of times either.

No matter how medical tests pan out, they still put you through an emotional and organisational wringer. Moreover, I won’t even mention what we all could have accomplished if we hadn’t spent an eternity on hold… waiting. That just adds stress on top of stress because you can’t help thinking about what else you could be doing if you weren’t still waiting. After all, didn’t you know? Life’s a beach!

So far the test results are encouraging but we are waiting for the final results. Make that still waiting!!

Anyway, whenever you are going through a trial, you have to do the whole ying and yang thing and somehow balance up the good and the bad. You need to look after your mental health as much as your physical health…even when someone you love is seriously ill.

Ettalong Beach

Ettalong Beach

So after a rough week, we needed a great weekend. The kids were already been booked into scout and cub camps and were looking forward to extreme fun as well as pushing their physical limits.Geoff and I were off to Palm Beach together until fate intervened. Miss needed a taxi and so Geoff stayed home. I did reconsider Palm Beach but I really needed a break and we all know what the home front’s like. It’s a constant battle against an insatiable, demanding beast which is constantly sucking you dry. So as much as I hate to admit it, I took off on the Palm Beach Ferry looking forward to drifting off into a blissful state of suspended animation in Palm Beach and I wasn’t looking back.

Ettalong Wharf looking towards Booker Bay

Ettalong Wharf looking towards Booker Bay

Meanwhile, on the way to the ferry, Geoff’s short straw was cut even shorter when his mobile rang and he was off to work for a few hours. What have I mentioned about Mrs Murphy’s Law?

So there I was at Ettalong Wharf about to set off on my own private adventure, which, as it turned, it wasn’t going to be all rest and recuperation, after all.

What I love about traveling or going out solo is that you can meet an amazing cast of characters you’d never meet otherwise. When you’re with the family or group, while it’s fabulous to enjoy each others’ company and do things together, you also become insular. Immersed on your own private island. But Rowie was out of her chrysalis and my wings were just about dry. This repressed social butterfly was about to take off!!

Boarding the ferry.

Boarding the ferry.

Before even boarding the ferry, I met a wonderful group of 20 somethings who made me their  Paddington Bear.  I didn’t even need to lure them with marmalade. You see, with my broken foot back in the boot again and staggering along with my walking stick and my bag, I didn’t even need a sign saying: “Please take care of this bear”. It was pretty obvious I could use a hand. My new-found friends chivalrously carried my suitcase onto the ferry and even invited me to sit with them in the crew section, among the privileged few, which I might add, did not include the buck’s party wandering around the ferry wearing green aprons. Suddenly, I was part of a mobile party and it was such FUN!!!! Surrounded by a kaleidoscope of outfits, fake and real tans and short skirts. Actually, make that short short or some instances, even short short short. It was time to  Party!!!!

Traveling in style with my absolutely fabulous ferry friend, Emma. Happy Birthday!

Traveling in style with my absolutely fabulous ferry friend, Emma. Happy Birthday!

Fun and compassion…such a wonderful mix.When you’re having a bit of a rough trot, you don’t want all doom, gloom or even too much sympathy. There’s no better therapy than a laugh and experiencing an unexpected, spontaneous act of human kindness and the hand of friendship, especially from strangers from the distant galaxy of youth. It was just what the doctor ordered!

After all, don’t you sometimes get sick of being a grown up and I didn’t realise the Palm Beach Ferry could also be a time-machine.

Heaven!

Heaven!

But my new found friends, weren’t just about partying, looking good and having fun. They were such caring, compassionate and thoughtful people who really touched my heart. They had time for me. Included me.They even carried my bag to the bus stop, which also involved a lot of trust on my part as well. That’s gives an insight into the bond we’d forged on a very short ferry ride. I know this meeting wasn’t a random thing. That it was destiny. Meant to be. Serendipity.

At this point, we parted ways as I waited for the bus but the party continued. Another gaggle of twenty somethings were spilling over the footpath and onto the road. Putting my “mum hat” back on again, I felt like shepherding them off the road and back onto the footpath, although I said nothing. I don’t think you needed any testing apparatus to know they’d had more than a few drinks and I could sense the Palm Beach locals would be eying off this unruly mob thinking “@#$% Coasties!!” However, at least these characters knew how to have a good time and as long as they stayed off the road, they weren’t hurting anyone.They were all heading off to Newport Arms, which is abut a 15 minute bus ride from Palm Beach. The Newport Arms is one of Sydney’s most popular hotels or pubs and is quite legendary.

A disapproving Mrs Mangel from the hit drama series, Neighbours.

A disapproving Mrs Mangel from the hit drama series, Neighbours.

The bus pulled up and I sat opposite an elderly lady who was already sporting a few frowns and other disparaging expressions. If you ever used to watch Neighbours going way back to the beginning, there was Mrs Mangel and this woman was a white-haired impersonation a she sat in her seat so stiff and almost frozen,  The party revelers, including the bucks party, also clamber on board. By now, they were under the weather, rowdy and rambunctious. No sooner than the bus starts moving and the bucks start belting out iconic Cold Chisel songs, providing live, on bus entertainment. I loved it. Soaked up every minute of it. Great memories.

Cold Chisel: Cheap Wine & A Three Day Growth: https://www.youtube.com/watch?v=cFKxbr4_-Vc

Jimmy Barnes: Working Class Man: https://www.youtube.com/watch?v=tQl8_u-JKew

However, to say “Mrs Mangel” was looking “Uncomfortable” would be such an understatement. Evidently, she found the echoing sounds of fun and jovial happiness. as torturous as fingernails scratching down a chalk board. I could sense the pain in every cell in her body. It was etched across her face and she’s so incredibly uncomfortable. She yearned to get out of here. Get those louts off the bus so she could return to civilisation. She was really suffering in serious pain and looking across to me for some kind of understanding or even salvation. I haven’t made it to the hairdresser for awhile so the grey is showing but being more mature doesn’t make me a wowser. That said, I shouldn’t judge. I often struggle with loud noises myself but juxtaposed against everyone else on the bus, who were squeezing the fun out of life, it really looked like she’d swallowed a bag of sour lemons.

This reminded me of something an elderly friend once told me. She said that her husband had “decided to get old”. At the time, that struck me as odd. After all, he was in his late 80s and a returned serviceman, At that grand age, he was old. However, I am coming to realise that there is a difference between getting old and feeling old. Feeling old is a choice.My grandmother said much the same thing. That she’d look in the mirror and she didn’t know the old woman staring back at her. Quite remarkable really. At least, I used to think so until I started looking in the mirror and started seeing glimpses of photos I’d seen of my great grandmother looking back at me when I still feel 25 on the inside and I suspect I will feel forever young: www.youtube.com/watch?v=rQi8wEHMm5Y

I was barely on the bus and I was off, leaving the party behind as I headed for a weekend of silence, solitude and serenity alone at Palm Beach. Almost immediately, despite the animated screams from the kids playing in the pool next door (this time it was my turn to feel somewhat tortured), I fell into a deep, comatose sleep and began to dream.

Sunset, Pittwater, Palm Beach.

Sunset, Pittwater, Palm Beach.

When I finally woke up and the sun had all but set, I realised that the screaming had finally stopped. I’m not talking about the kids screaming in the pool but the screaming in my heart and in my head. I had only been vaguely conscious of the scream before but now that it had stopped, I could hear it so clearly and feel its pain. Yes, I’ve been screaming, silently, unconsciously screaming for some time but it was only now that it had stopped that I could ironically hear myself. The touch of human kindness on the ferry had released me. Set me free. Probably not forever, it was only intermission but it brought relief.

Now, I could feel myself slowly starting to stretch back into my full height, gaining strength and being able to stretch my wings enough to fly, instead of being curled up into a self-protective ball so I could just survive.

It was then I remembered a childhood song, which Google (my not so secret best friend) reminded me came from Romper Room: https://www.youtube.com/watch?v=aIRu8-5Nyek

Bend and stretch

reach for the sky

There goes Jupiter,

There goes Mars

Stand on tippy toes

Oh so high!”

I would love to hear how the love and compassion of a stranger has touched you. Please share!

Love & Blessings,

Rowena