Tag Archives: myositis

Teaching the Kids How to Cook

If you have been following my blog, you will know that I am currently having chemo to treat a rogue auto-immune disease. The chemo is going well and apart from some fatigue, I am largely feeling quite well. I am also starting to feel that the treatment is working and that my lungs are slowly improving…at least a bit. I’m still walking. Still breathing. Yesterday, I was bouncing around in the pool with the kids giving them piggyback rides. I certainly don’t look sick at all!

While chemo is going so, so much better than expected, it has been very thought provoking time and my entire life has ended up on the dissection table. Where am I going? What is important? What stays in and what goes out? It has been very intense at times.

However, while I’m naturally concerned about managing my own life and health, the kids are virtually my all-encompassing consideration. Mister is almost 10 and Miss is almost 8. They are too young to be faced with losing their Mum. That said, they’re not as young as they were. I’ve almost been fighting this disease for 8 years and am thankful for each and every extra year that we have together. Thankful that they are older, stronger, more independent and more likely to remember Mummy than the year before. This isn’t a morbid thing. It actually makes me really appreciate life more as well as the need to carpe diem seize the day. Squeeze each and every last drop out of everything. No waste! We really enjoy life most of the time.

Yet, while there is every likelihood that I’ll get through this crisis and be fine enough, the shadow is still there.  I feel very strongly that I owe it to Geoff, the kids and also to my parents to have my shit at least somewhat sorted out. I don’t just want to leave them in the lurch and make any bad outcomes any worse than they need to be. We all need to be somewhat prepared for when that mythical bus finally comes to get us and I want to leave a legacy, some memories, something for them to hold onto and not just an empty space. That is really, really important to me and I believe even more important for them!

Just before I was diagnosed with dermatomyositis 6 years ago, I read a book called Letters to Sam by Daniel Gottlieb, which was a series life lessons written in a letter format to his grandson. I was incredibly moved by this book and inspired to write something similar for my kids. I pounded the keyboard and wrote something like 40,000 words stopped and walked away. I decided it was crap which was probably me just being overly critical again although I had also read The Prophet by Kahlil Gibran and he put things so beautifully that anything else seemed quite redundant. Besides, I went into remission and it seemed like life lessons could wait. I’d become immortal!

With my recent health setback, I was more concerned about the practicalities of life rather than philosophical issues. After all, not all life lessons come in a book. They’re also hands on and tactile, developing our bodies as well as our minds.  I realized that the kids needed to become independent, responsible and stand on their own two feet and that cooking teaches these skills. These are skills they need to develop regardless of my health status. After all, cooking and cleaning up after yourself are essential, survival skills.

The further I progressed, the more I came to appreciate that cooking actually covers a whole range of life lessons. Cooking teaches the kids how to:

  1. Plan an activity.
  2. Follow procedures.
  3. Listen to instructions and follow through.
  4. Learn by example.
  5. Time management
  6. Work as a team
  7. Experiment
  8. Clean up after themselves.
  9. Have fun!

They also learn about the ingredients, their nutritional values and how they work together (or not).

Cooking and food preparation, also teaches them about their own bodies and how they operate and how food establishes and maintains good health, preventing disease. It also teaches them about the environment, preventing waste and issues like ethical food production and reducing food miles.

For our family, meal time is also a time of prayer when we give thanks to God and also pray for people in need.

Another huge bonus is that we are cooking together and bonding as we go. As the kids gain new skills, their confidence increases and they feel I trust them. That I believe they can do it and that goes a long way in helping them believe in themselves.

I am the chef and they are my eager apprentices. They love it and are keen to help, be included and have fun!

I never realized the simple act of cooking a meal could be so educational!

The cooking project has evolved as I’ve gone along. What started out as a desire to share special family recipes evolved into teaching them how to bake basics like Chocolate Crackles. As I faced chemo, I realized that they really needed to learn to cook nutritious meals, not just cakes. Life had taken on a more serious tone.

However, like most of my “educate the kids projects”, I had to bring myself up to speed before I brought them onboard. After all, I had to provide clarity, direction and leadership. I need to have clear directions in mind and know where we’re heading. This cooking project was never going to work as some horrible variation of Blind Man’s Bluff. That would only lead to fights, frustrations and destruction. The outcome would be negative instead of positive.

I had a lot to learn! Although I am a good cook especially when it comes to baking, I’ve been sick for quite a long time and my cooking has ended up in an extremely narrow rut. Every time I visit the butcher, I stare blankly at what really is a smorgasboard of choice and order chicken schnitzel or a leg of lamb yet again. My niece recently shared her secret of roasting boiled potatoes in the waffle maker and that’s bailed me out too. I also keep peas and corn kernels in the freezer which have been a salvation as well. As bad as things have been, I’ve never resorted to tinned spaghetti and there’s always been the local Thai takeaway. They know us well and produce a good, nutritious meal! We’ve also been given a few meals too thank you very much!

Back to the Cooking Project.

Step one…planning.

Last week while the kids were at my parents’ place, I started the preparation process. I went searching for recipes and expanding my own horizons. It’s seems that in the many years since I last really went looking for meal ideas in recipe books (in contrast to baking which I’ve steadily maintained), the whole landscape of Australian cooking has changed. In my day, the Australian Women’s Weekly had an international cooking series where each nationality was kept distinctly separate. Italian was in the Italian book. French in the French book and Chinese in the Chinese book. Thai was a relative late comer to the series. They’ve recently put out a recipe book called Kitchen where the recipes are organized by cooking utensil. Under “The Saucepan” for example it includes: Beef Massaman Curry, Lamb Meatball korma, Baked Pumpkin and Spinach Risotto and Fettucino Alfredo all in the same chapter with all the nationalities mixed together under the unwritten banner of “modern Australian”. Don’t get me wrong. This is a great development. Australian society isn’t always such an integrated, cultural melting pot but it does show me that we’ve come a long way!

I developed a menu for the week, which has needed to become more flexible after my Dad bought us some chops and we’ve been out to dinner as a family and had a friend over for a rather unhealthy lunch of fish and chips. A friend also popped over with four of her kids and her daughter largely made the pancakes for lunch with me so that was another variation on a theme. Hmm…flexible focus. I’m learning on that front as well.

Here is our proposed menu for the week:

Monday night: chops and salad.

Tuesday night: Atlantic salmon and salad

Wednesday night: Pizza from scratch with Salad and Apple Pie for dessert.

Thursday night: Roast lamb with roast veggies (this is my chemo night).

Friday night: Lamb salad.

Saturday lunch: pancakes. We serve these with grated apple and I quite like blueberries as well.

Stay tuned.

Best wishes,

Rowena xx

Seeds for the New Year

January 2, 2014

Seeds in anybody’s language spell hope, new beginnings…the start of a dream but for me there was an added resonance.

Yesterday, I received the ultimate New Year’s gift.

It wasn’t expensive or luxurious.

In fact, it was deceptively simple and it cost its giver nothing.

Not even a cent.

“How is this so?” I hear you ask in a very Professor Julius Sumner Miller tone of voice. Perhaps, you haven’t heard of him but he used to host a science show called “How is it so?” and he also did an ad for Cadbury Dairy Milk Chocolate where he managed to get a boiled egg inside a milk bottle. It was pretty impressive stuff.

Julius Sumner Miller

This was in the days before a more recent Australian politician, Pauline Hanson, made the phrase: “Please explain” legendary.

Well, I am overflowing with explanations.

The kids and I were visiting some friends. All the kids were playing. I’d brought my friends some of my White Chocolate Rocky Road and she’d given me a slice of her Wild Strawberry Cheesecake, which was incredibly lush and made completely without additives and nasty chemicals. Wow! It was exceptionally creamy and I must admit I was feeling rather spoilt. This is the sort of thing you usually have to go to a café or gourmet bakery to find….very, very nice. My friend also made me a cup of tea and there is always something particularly healing and soothing about someone else making you a cup of tea, especially when you are a busy Mum and always seemingly looking after everybody else. She was an angel.

While the kids were bouncing round in the pool, I couldn’t help notice all their veggies. They grow their own tomatoes, beans, beetroot and more in garden beds raised above the ground. All these veggies, which could almost amount to a small market garden, are growing slightly more than a stone’s throw away from the beach on a standard suburban block. Quite a miracle really except you can see this garden is very well-maintained and cared for. Loved.
I was incredibly impressed and inspired.

Not that I looked at their set-up thinking: “if they could do it, I could do it”. Not on your life!!! However,  I did consider that just maybe we could manage one tub…a veggie patch on a smaller scale and actually grow something! The rest of our garden might be derelict but perhaps we could manage to look after this small patch of soil and develop our own backyard “oasis”.

Actually producing veggies we could eat would be nice but that would be more of a by-product. I was equally interested in the gardening experience in itself and all that excitement that comes with planting seeds and waiting, waiting, waiting for that very first green shoot to finally poke its head through the soil to greet the sun and a whole lot of eager watching eyes. The kids would love it. I remembered picking beans straight from my grandfather’s vine and just how amazing that was. As a child, it was a veritable miracle!

Moreover, being somewhat of a life-lesson addict, I thought the routine of having to water our plants was going to be good for the kids as well. Routine, responsibility, nurturing…these are all important life skills. Things perhaps you could learn from books but I really doubted you could learn them from playing Minecraft, even if you do get to grow virtual crops!  They need life experience as well. To do things with their hands aside from pressing buttons all day.

There was only one drawback to my veggie garden scheme.

Me!

Although I’ve always loved gardening and used to have quite a green thumb and have grown my own herbs, bulbs etc even in our exceptionally barren and sandy beach soil, I’m not good at keeping up the watering and so many, many plants have died from thirst.

In other words, I’ve become a plant killer.

Now, being a loving, caring and nurturing person at heart, I’ve had more than a little guilt over this and stopped buying plants until we could get the watering system going again. We’ve been on drought status and water-restrictions for many years but now we have no excuse. Water restrictions have eased and while we still need to be responsible about our water consumption and I do tend to re-use water at home, we can actually water our plants.

However, I have a very bad track record. It all starts out alright but slowly but surely the watering tapers off and without rain, we all know what that means.

But I am always a firm believer in change. Personal growth. After all, we are fluid, flexible beings. We’re not set in stone.

So after expressing my interest in starting our own veggie patch, my friend gave me a handful of dried beans filled with seeds with the potential to create our very own bean plantation in our small, yet to be constructed, backyard tub.

I carefully, put the beans in my handbag trying to think of the right words to tell Geoff, ask Geoff, to build our veggie patch. It wasn’t exactly the best timing but it was something we could do together as a family and I wanted the kids to learn all about gardening, soil, watering, worms…our environment. We have had a worm farm for 4 years and so this would just be an extension of that and indeed it would be a great use of all our juicy, fertile worm dirt. It no longer go to waste just sitting at the bottom of the tub. We would convert it to lush, fresh produce oozing with vitamins and none of the horrible chemicals. Perfection, in other words.

But as I said, this isn’t exactly the best time to launch into new gardening project even a small-scale because we are currently struggling to manage the everyday stuff and when you consider Maslow’s Hierarchy of Needs, growing your own veggies is more of a luxury not an act of survival. At least, when you live walking distance to at least three huge supermarkets and a great fruit and veg shop, it is.

I guess this is where I really have to stop being cryptic and answer your “please explain”.

You see, I haven’t really explained or updated my health status for some time. Even though I am fairly open about my life, I have struggled to find the words and it is difficult to tell people when things get worse, when I have a setback because I know that even people I haven’t met in this weirdly intimate world of blogging, care about me.  We are only human and you don’t need to meet in person to be a friend, to love or to care. My situation is also quite emotionally charged because I have young kids and it’s not nice having to think about children potentially growing up without their Mum but that is what we live with. We are conscious of this as a possibility as it is for any one of us. We are just more conscious of this possibility than others and can actually take steps and plan ahead. Not for the eventuality but the possibility. While this shadow lurks around,it also enables us to capre diem seize the day and squeeze the marrow out of life. We have fun!

Anyway, a few months ago, I developed pneumonia. This wasn’t as bad as pneumonia gets but it was pretty awful and I spent 3 weeks in bed and was coughing so badly that I pulled muscles in my stomach. That’s never happened before and that was really scary and it hurt. We put the kids in before and after school care for 2 weeks straight…something we’ve never done before. It was a big deal. Things were pretty serious and we were considering hospital but there was also the risk of catching something else in there so Geoff wanted to keep me at home.

My GP sent me off to get lung x-rays and these showed some issues so I went for an updated CT Scan. I’d had my last CT scan two years ago and it had shown mild institial lung disease, which is a form of fibrosis. This wasn’t considered a problem at the time but they started monitoring things more closely. This is a nasty disease and it kills. But treatment is available and of course, works better when you catch it early, which we have. Monday I saw my rheumatologist. Tuesday his secretary called and Thursday I started chemo along with transfusions of methyl prednisone, which has all the reverse side-effects of the chemo and makes you really bouncy, euphoric and unable to sleep. It’s like buzz! Buzz! Buzz! All this steps are designed to reduce inflammation and gain control of my disease.

This situation may not be ideal but I am certainly in the best position to mount a counter offensive and I am also looking at other ways of improving my lungs such as swimming and playing the recorder.

Of course, the side-effects of the chemo can include losing my hair. I almost had to laugh at that because after taking 6 years to finally get my hair cut off and being really pleased with the results, now I was being threatened with losing the lot. 90% of me didn’t care as I had no doubt that losing my hair was nothing compared to saving my lungs. I need to breathe. But at the same time there was still a residual “growl”. I figured that it would be just my luck for my hair to fall out just when I’ve got it all sorted.” I really do love my new hair.

So far so good. My hair has stayed put and I’ve had none of the expected side-effects from the chemo aside from fatigue. I have a few buzzy days after my treatments from the prednisone and then a few days feeling wasted and then I’m back on deck for the next one.

While chemo might and I guess certainly does sound depressing, right from the start I have been telling myself that it is only six weeks. Being in the lead up to Christmas, I thought of the kids countain down the number of sleeps until Santa arrived and I would do the same…6,5,4,3,2,1…blast off!

This really helped me face my first treatment and now that the side-effects are nowhere near as bad as I’d expected, the countdown isn’t really an issue. I had my third treatment today so now I’m officially halfway. It’s all been going so quickly.I also made jokes about getting chemo for Christmas, which in reality is the best Christmas present I could have. Treatment and hope. These are a gift.

Yet, to be perfectly honest with you, the important thing isn’t just surviving chemo and getting through.

What matters is that it works. That my auto-immune disease responds and goes back into its cupboard and doesn’t come out.

A rainbow of hope.

A rainbow of hope.

That’s the real waiting game. My cough has dramatically improved. Yet, as positive as I am, I still have doubts. Just like the seeds of faith, the seeds of doubt can also germinate and grow like crazy…the weeds in the garden of hope.

That’s where my ultimate New Year’s Day present comes in…those bean seeds.

It didn’t hit me straight away but those seeds were almost like a promise ….a hope. I will get better. Those seeds are offering me the vision of a brand new life and healing…renewal. I cling to that hope and pray!

Now, I don’t know that for sure. My disease has been pretty resistant in the past but it has also responded…eventually. I like the science behind my new treatment. I will also be treated with a drug called rituximab after the chemo and it is a much more targeted therapy without the toxicity of the chemo. It really could be the treatment that will ultimately work for me and you can only access it after other avenues have failed due to the cost.

So it could be that while this setback is serious, it could well be that coldest time of night before dawn. That this new treatment should and could be the solution!

That is our prayer and our hope.

I would love to receive any words of encouragement or stories of overcoming the odds. It would mean the world to me.

Love & best wishes,
Rowena xx

I was given a handful of dreid golden beans filled with seeds….the makings of our new veggie patch.

Turning My Mountain Around

Now that I have pulled off my Great Downhill Challenge, it might appear easy, achievable, a fait accompli which was never in doubt.

That is the great value of hindsight. Until I had actually skied down the Front Valley at Perisher, even I had my doubts. I was optimistic, hopeful and had put in the hard yards. Yet, the great unknown was still hovering over my hopes like an omnipresent raincloud threatening to burst. All I could do was have a go and do my best. I booked myself into a private, adaptive ski lesson and really didn’t know how things would pan out. Far from being the all conquering hero, I was 100% chicken wobbling on my skis gritting my teeth, holding my breath and staring at my feet. Thank goodness I had my instructor Tom to guide my path. That made all the difference.

My other life- having my transfusion of IVIG. It's actually quite relaxing.

My other life- having my transfusion of IVIG. It’s actually quite relaxing.

Skiing isn’t an easy sport for anyone and perhaps not a good choice for someone in my situation. I was diagnosed with hydrocephalus (excess fluid in the brain) in my twenties. I had brain surgery and had a shunt inserted which largely manages this condition, although I still have some residual symptoms. I also have a serious life-threatening auto-immune disease called Dermatomyositis (DM) which seriously affects my muscles, lungs, skin and digestive tract. I developed DM after my second pregnancy at age 35 and had experienced no prior symptoms. I literally take a dozen tablets every day to manage DM, in addition to having blood transfusions of immunoglobulin every 3 weeks. My DM is considered severe and fairly unstable. My mobility and energy levels fluctuate greatly even within a given day. Most days I have a 1-2 hour nap to get me through the day and I usually wake up feeling like a lump of stone. I can barely move.

Obviously, my medical situation turns any kind of skiing into a fairly significant challenge.

2012...Writing at the snow

2012…Writing at the snow

In June 2012, our family went to the snow using Flexirest funding. My husband Geoff and our children Jonathon and Amelia all went skiing while I stayed down below doing my writing and photography. I was enjoying the view but at the same time, I was pretty upset about not being able to ski with the rest of the family. Moreover, I’d really enjoyed MDNSW’s Adventure Camp at Nelson Bay and now found that I now enjoyed outdoor challenges and wanted to be a part of the action as well. I did do a bit of half-hearted research into skiing for people with disabilities but couldn’t find anything. Meanwhile, the afternoon before we were to leave on our big skiing adventure, the pathology lab rang me directly at home to tell me to go straight to Emergency. They thought I was having a heart attack. My CK levels were also up. Yet again, my life flashed in front of me. We hoped that the DM flare was responsible for the blood test results in which case there was no heart attack but we still had to go through Emergency. As you would appreciate, you never know how long that will take and there was also the usual concern about being admitted. Hospital was the last place I wanted to be. Fortunately, three hours later, we were given the all clear and we were still off to Perisher but my DM was back and my prednisone was also on its way up again…a double whammy!

Family Portrait 2012- I had serious breathing troubles climbing up the hill.

Family Portrait 2012- I had serious breathing troubles climbing up the hill.

Almost as soon as we arrived at Perisher, we spotted the Paralympics ski team zooming down the slopes. They put me in touch with the Disabled Winter Sports Association (DWA). I heard that they had special equipment which could get me down the mountain. The Great Downhill Challenge was born. Instead of trying to climb up the mountain, I would ski down. It all seemed so much easier and I pictured the four of us smiling away as we skied straight down the Perisher’s Front Valley holding hands. That “vision” shows just how much I was dreaming. That’s not how you ski down a mountain, especially as a beginner.

As time went by, I also realised that when you draw a mountain and turn it around, you get a smile. You can even add some eyes and you have a smiley face! I loved that. However, I came to find out that turning a mountain around is much, much easier on paper than it is in the real world. Those mountains have been mountains for a very long time and weren’t designed to be moved at least by me.

Initially, I had intended to do the Great Downhill Challenge as a fundraiser but realised that skiing itself was going to be challenging enough. I also thought it would be better to try skiing first before I committed myself to any great feats of heroism. Moreover, a friend of mine had pointed out that if I staged a down the mountain event, then I’d actually have to go down the mountain. It was only when I stood at the top of Front Valley gazing over the edge in horror, that I understood what that really meant. It was a very, very long way down and I was absolutely terrified. I was quite relieved that I didn’t have that extra pressure.

My first time up the magic carpet Perisher with my instructor.

My first time up the magic carpet Perisher with my instructor.

Membership with the DWA entitled me to 50% off my lift pass and ski lessons. I wasn’t quite sure what equipment I would need and in the end we agreed that I would try a private adaptive ski lesson without equipment to see how I went. My instructor was the wonderful Tom Hodges from Perisher Ski School, who also volunteers for DWA. He has had a lot of experience teaching people with a wide range of disabilities to ski using a range of equipment. I thought I might be needing a sit chair but no. I was out on two skis and Tom who doubled as my anchor. We started off going up the magic carpet and then gently snowploughed down the slope (it was a huge hill to me at this point but in reality it is almost flat!) Tom told me to breathe. Look up and enjoy the scenery. Apparently, I was staring at my boots, holding my breath and gritting my teeth the whole way down. Gradually, my fear eased and by the end of the lesson, I was feeling quite exhilarated and was almost having fun.

Day 2 proved much more challenging. Tom with his big ideas suggested we take the chairlift up the top of Front Valley. I was keen enough. I trusted Tom and ignorance was bliss. I didn’t quite realise we were going that far up and the mountain looked very different close up especially when I was about to ski down. I was absolutely terrified, consumed by fear!!! It was such a long, long way down. I felt like I was perched on the edge of the world about to plunge to my death.

That said, Tom was very encouraging and saw strength in me which I couldn’t sense in myself. He reminded me that I just needed to do my snowploughs and turns like I’d been doing down below and I’d be fine. I fell on a tricky part at the start and Tom held my hands for a bit until I found my footing and gradually let me go.

Skiing down the mountain was much, much harder than I’d ever imagined. Rather than skiing straight down the mountain, I needed to snowplough and then put all my weight on my downhill leg to turn. This took quite a lot of force and I was needing to trust my “jelly” legs which have let me down in much more humble situations. That in itself was scary. Yet, Tom had faith in me and besides, I wasn’t going down the mountain alone. I had expert help where I was encouraged to do what I could for myself but with a safety net when I struggled. Struggle I did. My legs were sore and I was really straining to breathe. I had to stop a few times to rest, catch my breath and take some Ventolin. Apparently, I was holding my breath and clenching my teeth and my whole body was twisted and contorted by fear. Going down the mountain was so much harder than I’d thought but I was doing it. At least, that felt good!

I was certainly no picture of success but that’s what it takes to catch your dreams and finally make them real. You have to push yourself well and truly beyond your comfort zone or there is no challenge.

Somehow, I actually skied down the mountain and survived. I’d done it! I’d turned my mountain around but would I tackle the mountain again? Could I go back? I still had 3 days to go. That was my second challenge and at this point, I hadn’t skied with the rest of the family yet either. That was really the most important part of my goal…for us all to ski together. That was getting harder because the kids were no longer beginners and they were rocketing down the slopes after ski school with Geoff. They were proud of me but I was way too slow.

The next morning was a bit of a turning point. I had a nasty chest infection threatening to put me out of action. I scoffed down some olive leaf extract to fight it off and used my puffer. I wasn’t going to let a cold hold me back. We had one week at the snow. I could collapse when we got home.

My shadow taking the chairlift

My shadow taking the chairlift

I was sitting on the chairlift heading up to mid-station for my morning hot chocolate with cream and marshmallows when I experienced such pure peace, serenity and weightlessness. It was like an out of body experience where all the heaviness of my tired limbs and heavy ski boots were gone and I was just floating along like a bird freed from all restraint. Feeling so unbelievably good and that liberated, I considered spending the rest of the holiday just going up and down the chairlift instead of skiing. Take the easy way out. Why push myself when I could just relaxed and have fun?

Enjoying the view without skis at the top of the Quad Chair, Perisher

Enjoying the view without skis at the top of the Quad Chair, Perisher

However, I remembered my battle with the violin and how it took time and a lot of practice to get over that beginners hump before I could actually enjoy playing. It takes 10,000 hours of practice to succeed so how could I possibly expect to ski like a pro after just two hours? I decided to spend more time practicing where I was comfortable on the carpet before I tackled the mountain again. I practiced, practiced and practiced and by day 5 on Friday, I again felt able to take on the mountain, although this time we went halfway and did it twice. Geoff joined us the second time round and Tom did a great job capturing the moment on the Go Pro. For once, I wasn’t behind the camera.

I still had my L plates on and my instructor in tow but I had become a skier. Me with jelly legs, dodgy lungs and a shunt in my head had actually conquered the mountain or at least a small part of it. Awesome!

At 4.58 pm Friday afternoon, just minutes before the magic carpet was closing on our last day, the four of us finally skied down the magic carpet together. We weren’t holding hands but the kids and Geoff were following my lead and we finally skied down the mountain together all smiles!

Together, we had turned the mountain around!

PS You can beat one mountain but you can be sure that another mountain is just lurking round the corner. This year, I waited until we arrived home before I had my blood tests. Wise move. My Professor just called. The dermatomyositis is on the march again. CK reading of 423. Not too bad but heading the wrong direction. Let’s  hope I start going down this mountain again soon!

Poem – Mummy

The steadfast oak

stands strong and proud –

an omnipresent silhouette-

in the local park.

 

Her roots spread deep

throughout the earth.

She’s rock solid.

A survivor.

Victorious over much adversity:

drought, wars, storms,

the angst of love gone wrong.

I    Love     u

is still carved in her bark,

long after the lovers have gone.

 

Children climb.

Lorikeets, magpies, noisy minors

all chatter, sing and squawk

in her strong, muscular  branches.

Possums play ping pong

long after dark.

A myriad of bugs

march, flutter and buzz

through her crisp, green leaves.

 

Bursting with acorns,

she is the tree of life

carrying the world

on her shoulders,

while cheerfully smiling

up at the sun.

 2.

It was neither autumn,

winter,

nor the time for old age.

Somehow,

the rot just set in,

eating away all her strength.

All floppy jalopy

with a rubber trunk,

she could barely stand up.

Yearned to become a chair.

Rest.

Fall asleep.

 

But an oak is still an oak.

Children climbed her hollow branches

at their peril.

The lorikeets, magpies, noisy minors

still sang oblivious to her cries.

Possums still played ping pong after dark,

although fatigue smothered her

like a fatal shroud.

The bugs never, ever stopped.

As much as she tried

to kiss them goodnight,

they couldn’t see

and she couldn’t speak.

Slowly but surely

the world was sinking.

About to fall off

those once firm shoulders

and crack like a fragile egg.

 

Splat!

 

3.

 

But then the gardener came.

The gardener came with x-ray eyes

somehow sensing her weakness,

despite her strength.

He knew the tree.

Cell by cell,

he painstakingly

restored her soul,

making her whole.

 

Strong, scarred

and a little crooked,

the oak again stands tall

carrying the world

on her shoulders,

smiling at the sun…

the tree of life.

 

15 & 16th August, 2013

 

Reflections…

 I have been feeling tired and rundown lately and yet am expected to keep going. The kids jump all over me with no idea that I am struggling to stand up. That I’m stumbling. Perhaps, that’s my own fault. I cover my tracks too well.

 

When it came to writing this poem, initially I wanted all the critters to get out of the tree. Give the tree a break. But then I realised that the tree loved being part of that community. That they gave her life. I realised that I push myself to spend time with my kids, to be a vibrant and active part of our community and this connection gives me life, even if it does sometimes feel a bit too much. I struggle to pick the kids up from school most afternoons because I love to be involved, catch up with my friends and fellow parents and be an active part of the school. As much as I struggle to do this, I would feel so cut off if I didn’t.

 

I hope this poem captures the tension between being loved and part of community and also the weight of illness and disability which can rob you of these relationships and experiencing the intensity of close relationships. This is where equipment like wheelchairs and walking frames facilitate relationships and connection. I don’t use these and I currently end up staying home and in bed when my mobility deteriorates. In many ways, I become cut off.

 

This poem also leads towards a cure and being healed, which remains a bit of wishful thinking on my part. I was excellent only a few weeks ago but dropped my prednisone and am feeling weak at the moment.

Anyway, these are just a few reflections.

 

xx Rowena

 

 

 

 

 

 

My Son and the Rose

This morning, I had an incredible Eureka moment.

No! I didn’t go running naked through the streets like Archimedes but I was running naked on the inside. The drought had broken and I wanted to run outside and feel all those life giving raindrops wet against my skin. Stick out my dry, parched tongue and quench an insatiable thirst.

Our son did the most amazing thing and I was the proudest mother on earth! This came after a difficult time for our family and I really needed a bit of affirmation. Being a parent is a wonderful thing but it can also be quite a challenge. Like the rose, love also has its thorns.

For even as love crowns you so shall he crucify you. Even as he is for your growth so is he for your pruning.
Even as he ascends to your height and caresses your tenderest branches that quiver in the sun,
So shall he descend to your roots and shake them in their clinging to the earth.

Like sheaves of corn he gathers you unto himself.
He threshes you to make you naked.
He sifts you to free you from your husks.
He grinds you to whiteness.
He kneads you until you are pliant;
And then he assigns you to his sacred fire,that you may become sacred bread for God’s sacred feast.

All these things shall love do unto you that you may know the secrets of your heart, and in that knowledge become a fragment of Life’s heart.

Kahlil Gibran, The Prophet.

For the last four weeks, I’ve been ill. I’ve had serious stomach pains and I’ve barely been eating. I have also been sleeping a lot and feeling extremely vague. I wasn’t sure whether I had a virus or if it was stress. I had another appointment with my lung specialist (which went well) and more tests and was feeling pretty stressed. Anyway, I was finding it very difficult to get the kids to school and organised some outside support to help get them ready in the mornings. I also lined up some friends to drive them to and from school. I needed to stop and recover somehow.

Despite my usual health issues, I don’t usually stop and my whole modus operandi is to keep going no matter what. Keep putting one foot in front of the other, even when it feels like I’m wearing concrete shoes and it’s quite difficult to for me to walk or even lift my feet. At times, it can get very, very hard but I’ve always been convicted that it’s easier to keep going than try to restarting the engine. I guess I’m scared that if I stop and actually let everything go that I’ll lose the lot…poof!

Anyway, we’ve really enjoyed having our helper here and she finished up this morning. As a bit of a parting gesture, our son gave her a beautiful, red rose from our garden. We were both deeply moved not just because he gave her the flower but his timing was quite incredible. You see, she had been having a bit of a rough day and she really needed a bit of encouragement and then Mister just turned up offering that great timeless symbol of love…a beautiful, home-grown  red rose with all its thorns. It was exactly what the doctor ordered…exactly! I could have cried and our helper was naturally deeply moved. It’s not the sort of thing you expect from a knock-about nine year old boy who plays football and runs everywhere with dirty, skinned knees but our boy is often full of surprises. No matter how hard we might try to classify him and squeeze him into some kind of box, he resists. He is full of so many contradictions and always keeps me on my toes. I never know quite what to expect next.

I was so proud of him. I could have shouted it from a mountain top: “I have the very best son in the whole entire world!!”

I was so proud of him and yet there have been so many times as a parent when I’ve wondered whether anything is getting through. Some things are private but suffice to say that my son has struggled a lot with my illness. There are times when I’m well and fully present and there are times when I can be like a ghost. I’m there but not there. When he was 3.5 years old, I was admitted to hospital and rehab for 7 weeks. That was a very long time for such a little boy.

Reading with Mister while I was on weekend leave from the rehab hospital

Reading with Mister while I was on weekend leave from the rehab hospital

For awhile there, I was either in bed or in a wheelchair and was really crook. I had two professors looking after me along with an entourage of medical students. That gives you some idea of just how serious things were. My prognosis was really quite unknown. Mister came in to see me. He looked up at me with his huge brown eyes and blond curls and asked: “Mummy better? Mummy better?” I remember that moment so very, very clearly. Bang!  It was like being shot between the eyes. Being shot in the heart. I said absolutely nothing and simply didn’t reply because we didn’t know. We didn’t have an answer. It was an incredibly hard moment!

We look like the epitome of happiness yet this photo was taking while I was at rehab hospital.

We look like the epitome of happiness yet this photo was taking while I was at rehab hospital.

My illness hit Mister pretty hard. He knew what it was like to have his whole mum and to be the centre of my universe. We used to do so many things together.  Then, along came his little sister and shortly afterwards, I became ill and everything changed. I was so exhausted and we juggled his care between my parents, day care and time at home. We did our best and it wasn’t anybody’s fault but that didn’t mean he was happy with the situation. I knew he was angry. I knew that anger was somehow locked deep inside him and it wasn’t coming out. His development froze for some time and he stopped writing, cutting and drawing. My health is a constantly shifting carpet with marked good and bad days so we can’t really come to terms with anything. But these good days are also a blessing because we can largely live an almost “normal” life. We squeeze as much as we can out of life because we know life is short and we have to …carpe diem seize the day.

I view my illness as an external force, an outsider, some kind of malevolent stalker. I don’t blame myself and I certainly don’t see the illness as part of myself, who I am or part of my “identity”. This perspective has been quite critical to how I’ve managed. I live with dermatomyositis. I am not my disease.

Unfortunately, the kids don’t make that distinction. For them, the illness and I are one and the same. When I’m well and able to do things, they are happy and I am the best. When I’m sick, they usually muck up and I’m “the worst mother in the world”. That’s a bit simplistic but you get the gist.

It can be very difficult, discouraging and downright depressing when I’m fighting my disease and a pair of cranky kids at the same time. So when my son gave our helper the rose, it was so much more than just an act of kindness. It was a sign of healing and of hope. I saw such love and kindness in his heart.  It was extraordinary and I was immensely proud. The drought had broken.

The rose is usually used to symbolise the duality of romantic love…the beauty of the flower and the pain caused by its thorns…a double-edged sword. However, the rose also represents the love for your child. There is joy and pain as a parent which all starts off in childbirth I guess.

Somehow, when our relationships with our kids are going through a period of drought, we need to hang in there. Keep the lines of communication open so that when the drought breaks, the seed is still there ready to grow.

When the night has been too lonely
And the road has been too long,
And you think that love is only
For the lucky and the strong,
Just remember in the winter
Far beneath the bitter snows
Lies the seed that with the sun’s love
In the spring becomes the rose.

As beautiful as this moment was, I am still a realist. Every rose has its thorns but it’s still a rose.

xx Rowena 

PS It was interesting looking through the old photos to find some shots of Mister while I was in hospital. I have thought of him as a fairly lone, solitary figure and very sad. However, when I looked through the photos, I found much happiness, cuddles and togetherness. I actually remember kicking the ball briefly with  him while I was in rehab and we read together. We had fun despite our circumstances…an important thing to remember.