"Let the gratefulness overflow into blessing all around you. Then, it will be a really good day." Louie Schwartzberg
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In which one of our daughters runs away and then folds the laundry

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A couple of months ago we went through a tricky time with our twins.

Okay. I'm laughing at myself now. Flashback: I am juggling a giant u-shaped pillow on my lap trying to feed two babies at once in a football hold...two babies in high chairs throwing food on the floor and laughing hysterically...one toddler standing on the back of the other to open the lounge door and escape...both toddlers ripping the wallpaper off their bedroom wall because that too was hilarious...

When is it ever not a tricky a time with twins? It gets easier but it never gets less tricky.

I'll try again...

A couple of months ago we went through a VERY EMOTIONALLY tricky time with our twins.

The root of this tricky time was that since moving to a new school, they had been sharing a special little friend. At first the sharing of this friend seemed to work beautifully. All three of them had their roles and they sat together in the classroom, played happily together at lunch and enjoyed playdates together at each others houses. Together. I watched carefully, having seen little girls and their power plays at work in the classroom, but there was no cause for any alarm bells.

And then one day their desk groups were changed in the classroom and so one twin stayed with the special friend while the other ended up sitting with a group of boys.

A GROUP OF BOYS! What was the teacher thinking?!

Anyway, we counselled the heart-broken girl as best we could and watched with baited breath.

Cue power plays at lunch time and morning tea. Suddenly, our heart-broken little girl turned into mean-spirited little girl. And it didn't help at all that her sister is sensitive. When those big blue eyes of hers start to well up you end up swimming in the tears along with her. Trust me. I have swam in many oceans of her tears. But her sister seemed to have developed a taste for making her cry.

It all culminated in an incident at school where the mean twin wrote on a piece of the sensitive twins artwork, "I hate you."

Of all the things she could have done or said, she chose the H bomb. We do not say the H bomb in our family and above and beyond anything else in this life, WE ARE LOYAL TO ONE ANOTHER.

But before we could deal with the H bomb, the hater denied all knowledge. It was someone else that wrote it. It wasn't her. Except that...she had already confessed to the teacher that it was her.

Logic doesn't always compute in the brain of a 9 year old and so still she maintained her innocence despite her already noted confession. Which naturally led to tears and exclamations of "YOU NEVER BELIEVE ME."

No, we don't believe you little one. Not this time. We love you, but we don't believe you.


And so she did. 

We heard the front door open and shut with a bang. It was early evening and very cold so I knew she wouldn't go far. I looked out the window and didn't see her walking in either direction so assumed she had camped outside by the garage or perhaps under the rocks which landscape our yard, hoping for some attention. We gave her fifteen minutes until it was starting to get dark and then went outside to give her the attention she wanted and bring her inside.

She wasn't there. We looked up and down the street and couldn't see her anywhere. With the sky darkening as each minute passed, we got in the car and drove what we thought was the most obvious route.

Luckily it was the most obvious route and as we descended down the road towards a familiar place, we saw a shock of bright pink in gumboots trudging along the footpath. When we pulled up beside her she turned and started walking in the other direction. We tried again with the same result. Clearly this wasn't an attention-seeking ploy. She really was running away.

When we finally got her in the car and asked her what her plan was, she said she was going to go to her hut she'd built not far from there and sleep over night. When we asked her what she would do if she got cold she said she'd bury herself in the leaves. She'd thought it through.

And when we got home and wearyingly got our kiddios to bed, Paul and I had a massive debrief. We realised we'd reached crisis point in our family. It was not an easy time. Our man-child was unwell with CFS and painful headaches and the stress and anxiety of his condition had taken it's toll on all of us. We realised we had asked a lot of the girls without giving them much in return. And that made us terribly sad.

A few nights later when the man-child was well enough to have a family meal we talked it through with all of them. We talked at length about our relationships with each other, ways we can show our love and most importantly, all of us remembering to use kind words. And then we practised. We also told our little one that we do and will believe her from now on. Unconditionally. It was a gamble because we knew she had been lying a lot lately, but we knew we needed to try something different. And in that moment, I saw something click in her eyes. That affirmation was exactly what she needed to know she was loved and respected and appreciated.

It was a turning point in our relationships. Since that family conference we no longer have a mean-spirited twin and a sensitive one. We have two cheeky girls who appreciate a good laugh but have learnt to not step over the boundary into meanness. Our family is now defined by laughter and love letters rather than hateful words and tears. Just the other day the girls' teacher confirmed that there has been a dramatic change and she no longer has any issues between them. And while still loving their special little friend, both of them are making efforts to be friends with other girls at school too. 

So the other night the girls were cuddled into our bed watching a movie while Paul and the man-child played XBox. I luxuriated in a book on the sofa. I can easily lose myself in a book on the sofa but I eventually became aware that the movie was long finished and that the girls should have been in bed but weren't. I went to investigate and found the twins were just finished tidying their room. They took great delight in showing me the dolls house, which instead of being a storage place for every spare sock, pair of nickers and loom band they could find, was all set up with the furniture and dolls in action. One was brushing her teeth. Another on the toilet (they are nine after all). One asleep while another cooking at the little plastic stove. 

Amidst hugs and "I'm so proud of you" and exclamations of satisfaction from all of us, I reminded them that it really was time for them to go to bed. I wandered off to my own room and gasped.

Not only had they made my bed after their movie had finished, they had folded all the laundry I hadn't got around to from earlier in the day and stacked it in neat little piles. There beside the piles was this note:

It reads:  

To  Mum and Dad

We wanted to help you guys out today So we made your bed and folded the clothes. We hope you appressiate it we even tidied the bathroom bench and tidied our bedroom.


VD and 

AD xoxo...

There were tears again. But this time good ones and all my own. We all had learnt a valuable lesson together. And the payback for that lesson is priceless.

In which I review Go Set a Watchman and stand on my conscience

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There has been a lot of criticism of Harper Lee's newly discovered and published Go Set a Watchman. It seems people either love it or hate it. I have skirted around the headlines and reviews not wanting my own reading to be shadowed by the opinion of another. From the start I was convinced the book was a worthwhile publication strictly from a literary and historical viewpoint. It is the parent of To Kill a Mockingbird, one of the most-loved novels every written. I was fascinated by the story and wanted to see the birth-pains and the stretch marks which so sacrificially produced one of my favourite babies.

I had no idea that in reading it, I would be so profoundly affected.

This book is important.

It is important because the issues exposed by Jean Louise during the Civil Rights Movement in small town southern USA are still issues that we grapple with today: bigotry, fear, racism, marginalisation, segregation. It breaks my heart that we have learnt so little in the sixty years that Harper Lee's novel has been gathering dust hidden in a vault somewhere in a lawyer's office. 

Jean Louse Finch returns home to Maycomb from New York and is dismayed to learn that her father Atticus and childhood friend Henry are members of the Citizens' Council, a group of men determined to figure out what to do with the NAACP and the supposed problems arising from desegregation of blacks and whites. They present a fear-based rationale for their motives as Atticus eventually explains to Scout: "Honey, you don't seem to understand that the Negroes down here are still in their childhood as a people. You should know it, you've seen it all your life. They've made terrific progress in adapting themselves to white ways, but they're far from it yet" (246-247). 

Jean Louise is completely derailed by this discovery. Her vision of her father and best friend is altered forever but even more compelling is that so is her vision of humanity. She struggles with the fact that sitting on this council are "men of substance and character, responsible men, good men. Men of all varieties and reputations...(110). Maycomb is changed forever in Scout's eyes, just as it is for all of Harper Lee's readers and fans. Together we discover the ugliness and the fear and the judgement that sits in the heart. 

And that is the point. Because while it satisfies us no end to forever think of Atticus Finch as the perfect father figure, purveyor of justice, and the watchman of all our consciences, he is after all human. We learn along with Jean Louise that Atticus is "a man with a man's heart, and a man's failings" (265). And in learning this, Jean Louise finally comes "into this world" (263). She sees the world as it is with all its ugliness, fear and judgement. She grows up.

But the difference between Jean Louise and those on the Citizens' Council in Maycomb is that she is colour-blind: "You always have been, you always will be. The only differences you see between one human and another are differences in looks and intelligence and character and the like. You've never been prodded to look at people as a race, and now that race is the burning issue of the day, you're still unable to think racially. You see only people." 

60 years on and racial tension is still an issue in the USA, as the people of Ferguson Missouri and South Carolina are fully aware. Reaction to these events as well as a string of others has been strong and swift in the online world. But fear-based violence and segregation extends into so much of society beyond race and colour. Women's rights, abuse of children, murder and executions in the name of religion...all in the headlines at the moment. And recently, the US Supreme court legalised gay marriages nationwide, causing a furore of debate on-line. 

A furore of debate on-line. Really? Why in the name of humanity should it be an issue?

It has saddened me--derailed me in fact--to see Christians up in arms against this decision. So much vitriol and hate and fear has been universally rationalised with the words: "the Bible says clearly..." by the same people who withdrew their sponsorship of World Vision children in 2014 when the organisation announced it would hire Christians in same-sex marriages. The children were used as pawns and it worked. The organisation reversed it's policy. Where was the love in that? My heart broke and my eyes opened. In that and in other things happening at that time, I came into this world. I grew up. 

My response to them and to anyone who uses the Bible, their religion or belief to rationalise poor behaviour can be summed up by these words of Scout:

Why doesn't their flesh creep? How can they devoutly believe everything they hear in church and then say the things they do and listen to the things they hear without throwing up? I thought I was a Christian but I'm not. I'm something else and I don't know what. Everything I have ever taken for right and wrong these people have taught me--these same, these very people. So it's me, it's not them. Something has happened to me. (167)

I thought I was a Christian but I'm not. I'm something else and I don't know what.

But I know I'm not alone. There are others like Jean Louise Finch who do not see colour, race, religion, gender or sexuality. We see only human. We see only people. And I know there are many voices out there that are calling for an end to the hate, the fear, the ugliness. There are watchmen and women set in place, standing on their conscience. 

There are watchmen and women who write and speak and call humanity to account, just as Harper Lee did, sixty years ago. 

I always thought I did not wear a mask but apparently I do...

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When I say that I always thought I did not wear a mask, I admit to a certain amount of pride in that statement. See? No mask...I admit to pride.

By mask I am not referring to the various roles we have to play in our lives. I go from teacher to mother to friend in a day and each role has its own face which I must put on. These faces do overlap but generally I can't go into the classroom with my friend face on, and likewise, it would be unwise of me to wear my mother face when I am with a friend. But all of these faces are truly me and reflect who I a genuinely am. I am revealed to others whether I am teacher, friend, mother, writer, wife, so on. These faces are all a part of who I am.

They are not a mask. A mask covers and hides. As a quietly-spoken introvert who has always had to fight to be heard and known, the wearing of a mask to hide and cover is a strange concept to me. So I was taken by surprise when a friend I thought I knew and loved turned out to be an entirely different person. Looking back over the years of our friendship, I realise I did in fact see glimpses of the person she was hiding, but our friendship was built on a facade. When that facade was broken to reveal only duplicity, my heart broke too.

I was heartbroken and disillusioned not only because of the loss of a friendship which turned out to have never existed, but because I suddenly grew up. I faced the reality that not everyone is as they seem, a truth which had previously only existed in literature to me. As a student of Shakespeare, Austen and Thackeray, I should have known better. Just like every other good Honours English student, I had written essays on the theme of Appearance versus Reality. I knew this stuff. But it had always been head knowledge, rather than heart knowledge. I guess I was lucky that I had never experienced the heart knowledge in my own life until then.

But it made me examine myself in terms of the masks I might have been wearing and I was glad (proud!) at the end of it to have confidently ticked every authenticity box I designed for myself.

And then a couple of weeks ago we had some friends over for dinner. We hadn't seen each other socially in a number of months because for both us, life had become a bit of a challenge. At least we knew of each other's challenges and were open about them. Once netball season started we began to meet at the courts and as good honest friendships do, we were able to pick up where we left off. Each Saturday my friend would share snippets of their life having recently moved to New Plymouth from the country, and I would update my friend on our young man's health and prognosis. I thought I was being entirely honest and open in my sharing.

It turns out, I wasn't.

My friend confessed to me a few days after they were over for dinner that she was shocked to see our young man in his condition. She said she had not expected him to be as bad as he was, even though I'd been telling her he was in bed constantly, suffering from headaches etc. She told me that the expression on my face in telling her about our young man's condition didn't match the words I used and she would walk away from our conversations assured that he was okay. It was okay. We were okay. Because I was smiling.

Welcome to my mask. 

He is okay. It is okay. We are okay. I had no idea I was wearing a mask.

I looked at my facebook page. First, you need to know that I do not have a thousand friends on facebook. I don't even have hundreds. And I have unfriended people without a tinge of conscience because at any point, if I feel I can't be myself or share openly or honestly on facebook, then I scrutinise my friends list and discover that yes, there is someone there I am not entirely comfortable with. It's not that I share everything. Facebook is not the place. But I definitely do not want to have a facebook projection of me which is a different person than the real me. I understand why other people do that very thing and I am not passing judgment here. That just isn't my way. In all things, authenticity is my benchmark.

Sure enough, there it was, all over my facebook posts: He is okay. It is okay. We are okay. 

It's not that I am being inauthentic in my conversations with people or in my facebook posts. He is okay. It is okay. We are okay. That is all true. But it is only half the truth and I began to look at why I was only sharing that half. Why was I wearing this mask?

It certainly is not because I want people to think I am a superhero. I do no more than any other mum whose child is struggling. It also isn't because I wanted to hide the truth. It's not because I didn't want people to know the other side of it. In fact, I desperately do. 

It is simply because the other half of the truth is frightening and exhausting and sometimes terribly sad. I am constantly afraid of things getting worse, hospital visits, more tests and examinations. I am constantly scared that I am doing the wrong thing and frightened of the unknown because no one knows what it is, what caused it, why it has happened, how to treat it and what the future will look like. I am afraid for his future full stop. And I am constantly exhausted by the roller coaster of good days and bad days and maintaining positivity for his sake as well as our own. 

Often I am sad. He is missing out on so much and he is also in pain with severe headaches. How can I be anything other than sad about that?

But all of that truth is a burden. And I don't want to burden anyone else with what we have to carry. That really is what it comes down to and why I wear a mask.

So I share one side of the story, one truth, and in so doing, I mask the other. I share the funny things that happen, the times when our boy is up and laughing, and photos of the excursions we have with the girls. Yes, every time we take the girls out for a "family" outing, my heart breaks a little bit because we are missing one. Yet I love and cherish these moments too as the photos show.

The smiles on our faces are very real and true. We are happy. We can be extremely happy while also being very sad. We are okay even though things are not. Because we have hope. And hope gives us the strength to carry the burden and the sadness and the exhaustion and the fear into tomorrow. Because that's all we can do.

So if it is a mask I am wearing, I'm good with it. My pride can take that knock. It doesn't mean I am Becky Sharp or Mr. Whickham. Mine is a hopeful mask; it says, yes, there is a hang of a lot of stuff going on that quite frankly, sucks, but I'm smiling because I know it's not forever. And I'm smiling because there is a lot of good stuff too.

Choosing to trust the best way when there is no manual

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When we were pregnant with our first baby, I was rather perplexed to find that there was no manual. I found a lot of books and a lot of people willing to give me their advice but everything and everyone seemed to say something different. In fact, they often gave the complete opposite advice. Bed-sharing was a classic example. Everyone had a well-formed, backed-up opinion on whether it was right or wrong to share your bed with your baby. It became obvious that there was no right way, and to my clear-cut, black and white logical way of thinking, that did not make sense. Surely there is a right way. Lots of different ways, yes, but what was the right way?

Thus began our journey into the great big perplexing world of parenting. 

Thank goodness this was before the days of Google. I had enough to sift and filter without the opinions of the entire world-wide-web. It was already too much and we had to find a way that suited us. Perhaps it was not the right way, but it was the best way. I had to be satisfied with that, and looking back I can see that it was definitely the best way to parent our first baby. By the time babies number three and four came along (at the same time), all manuals would have been thrown out the window regardless of what they advised. Right or wrong, bed sharing became our default. We were so tired we had no other option.

Forgetting that feeling of "too much," when we received our son's diagnosis of Chronic Fatigue Syndrome a month or so ago we went straight to Google.

CFS on Google: it's a minefield. Worse than parenting methods. Trust me. More than once I slammed my laptop shut with exclamations of "rubbish!" (or worse).

Too much!

I didn't want the opinions of everyone on the world-wide-web; I wanted the right way to treat our son.

Once again, I've had to accept there may not be a right way to treat his symptoms. But I do believe there is a best way and it was a matter of discerning, filtering and judging what is the best way.

Ultimately, it has become a matter of trust.

I know better than anyone what it is to be so desperate for something that you leave your brain at the door. My excuse is that I did not realise at the time what I was missing and consequently searching for. I'd like to think that if I had been self-aware then, I would have been more discerning about the people who were so ready to jump in and fill that need. Hindsight is a wonderful thing.

Out of that experience, trust has become very precious to me. I used to trust naively and unthinkingly. I always saw good in others; therefore, I trusted them. Now it doesn't come easily, but it comes appropriately and when I have it, I value it. Trust and I have learnt to understand one another in a carefully considered and reasoned way. I do not trust blindly. But I still trust. And when I say "I trust you," or "I trust this," it means an awful lot.

So I have chosen to trust a team of medical professionals in the care and treatment of our son. Whatever they say goes and whatever "manual" they offer me, I will embrace and pursue with all the commitment I can muster.

In trusting our team, I have not left my brain at the door. I have reasoned this choosing to trust logically and very carefully. First, they are medical professionals. They are educated, highly trained, experienced and are doing their job to the best (and beyond) of their ability. Well-meaning people have (unhelpfully) regaled us with stories of medical misadventure and I understand this risk but I am putting those fears to the side. Second, our team has no vested interest in us trusting them other than medically and ethically, to see our son get well. No financial gain, which is important because not all people who offer us a solution can say that. Third, they are all individually saying the same thing. They all have embraced the best method for treatment. Consistency is a very good sign.

Finally, I discern that our team is made up of honest, good-hearted and caring people. To some of them at least, we are more than just another case. I am aware that I have been a poor judge of character in the past, so I won't rely on this alone but it is almost enough. Actually, in this case, it is very nearly enough.

Do they have all the answers and the right way forward? Possibly not. Will they let me down? Possibly. Should knowing this affect my trusting them now? No. Because it is my reasoned choice to trust.

If you have stumbled across this blog because you too are facing Chronic Fatigue Syndrome or some other chronic illness with your child or loved one, I encourage you to find the best way forward for you and your family, to trust that way and to commit to it. It's not a manual and it won't always be easy but the distractions and other paths can be overwhelming causing you to lose your way. In this, we do not want to lose our way.

Welcome to our Table

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Our family lived in the same small town for nearly 17 years. I had lived there longer than any other place in my life so that says a lot. And in those 17 years we had managed to accumulate a lot of stuff. I am a pack-rat, a hoarder, a lover of keepsakes. My husband has to throw away anything from the fridge that is passed it's used by date. I can't. I just can't. But upon selling our house in Inglewood and looking ahead to packing, storing and moving, I took a good long look at all the stuff in our life from those 17 years. And I didn't like it. Any of it. I filled the wheelie bin week after week as I chucked, discarded and pruned our life back to the bare minimum. Anything worthy of being kept but by someone else either went to Hospice or I sold it.

Thus began my love-affair (okay, not quite the beginning, but it sounds good) with Trade Me, our national auction site along the lines of Ebay. I listed everything I no longer loved for $1.00 and watched it all walk out the door. 

It was so satisfying.

We pared our possessions back so that they filled every square centimetre (just ask my husband the mathematician who looks forward to packing our van for camping every year as a challenge of which only he is worthy) of a three metre by three metre storage container. Then we hit the road with our worthily packed van for a holiday.

Upon our return we reclaimed our 9 cubic metres of possessions and moved into our rented house in the city, where we are living now. Paul and I slept on the floor for six weeks because we'd sold the bed I no longer loved. Our eldest was on a roll-away bed. We watched TV from the bean bags having sold our lounge furniture. We ate dinner off the arts and crafts table and sat on borrowed chairs. It was a bit like flatting again when you're newly married and broke. An adventure and a challenge. And it was just short term until our house was built and we could move again. We were living in the in between and we could get by with that. It didn't make sense to buy stuff and then shift it again in a few months.

But there is only so long you can live your life in the in between. Soon I began to look for new things, to get a sense of what I wanted in our new house. Just looking of course.

Pretty soon there was a new couch in our family room. And two high-backed chairs in our living room. All on sale so it made sense. Perfect sense. And sleeping on the floor grew old very quickly.

The thing I didn't replace straight away was the dining table and chairs. I was determined we could continue to make do there. However I did begin to look at different ones in order to narrow down which style I preferred.

I've grown to love pre-loved, well-made furniture at a bargain price. Our buffet falls into this category as well as our china plates and teapot. These are treasured items in our home. It is also very therapeutic to find pretty things and make them prettier. During a difficult time in my life, I learnt the techniques involved in restoring furniture and how to apply different paint finishes. I experimented with chalky paint and dark wax. It was extremely satisfying and I found my niche. Plans are already afoot for a workshop in the new house. My cave, not a man-cave.

So when our man-child became unwell earlier in the year we found ourselves in the wilderness again. A perpetual state of waiting. Waiting for appointments, waiting for tests and waiting for results. Then still more waiting for a plan.

It was excruciating.

Paul periodically absented himself from the wilderness by going to our section and building two retaining walls. This was no small project, but it was a therapeutic one. And I was so jealous. I had no project and no space in which to do one anyway, until a friend suggested I find something small that I could work on.

Back to my beloved Trade Me where I found two stools, a small table and an adorable cabinet.  All pre-loved, all pretty and all requiring some upcycling. Those projects got me through the worst wilderness days and I am so thankful for that simple but much-needed suggestion. Besides which, shopping itself is therapy.

But in that time of scouring Trade Me and Pinterest for projects and ideas, I began to narrow down exactly what I wanted in a dining table for our family. While there were a lot of elegant and vintage styles I loved and became very familiar with words like mahogany and queen Anne and pedestal, I knew that our dining table had to convey a very particular message which wasn't quite achieved with these styles.  Quite simply, our new table had to convey the word welcome

Welcome to the table and share with us.

When you have a child who becomes unwell, the very first thing that can happen is that you feel isolated and alone. For a start, you find yourself at the mercy of the medical system and all of it's bureaucracy. Second, your well-meaning and loving friends just do not know what to do with you. And you'll be the first one to admit you're not much company anyway so you don't blame them when they think the best idea is to give you space. You cannot plan, you cannot invite and you cannot even fathom what the next day might look like.

But we have been blessed. While still feeling isolated at times, simply from the knowledge and overwhelming feeling that no one else can wear these shoes for us, we know that we have not been alone. 

We have a community holding us up and for that we are very grateful.

I admit there was a time I shut up shop on the whole idea of community. I had been used and abused and not only did I think our table would only ever seat my family alone, I had planned to build very big walls around our new house.  Thick and high walls. An impenetrable fortress.

But that's just not me and definitely not how I want to live. My community knows that too and they have patiently waited for me to heal, to grow and to know it too.

So I pursued a table to symbolise welcome with a passion which bordered on obsession. Something like this was my goal:

Or this:

I decided upon a farmhouse table and occasionally I even found one but it would be too small or too expensive or too broken. Which was okay since I was determined to make do until we moved. A table is a very big and heavy thing.

This week I found my table. An old, planked, knotted, wood-splitting, carved-legged, orange, pine farmhouse table that has so much history it's been extended to accommodate a growing family and then neglected as the family has grown up and moved away. 

Now we are the table's new family. I will eventually refurbish it but for now it is just right in all its orange knotty two metre long brilliance. It is the table around which this family will grow and laugh and cry and share our stories. And even though it was not logical to buy this table now when we are only a few months away from moving again, and because most often there is only five of us seated at it, it is necessary. 

The table reminds us that we are still six; in fact, we are more than six. And that the more than six of us will gather together around this table soon.

And often.

On Music and Keeping "this love in a photograph"

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We keep this love in a photograph
We made these memories for ourselves
Where our eyes are never closing
Hearts are never broken
And times are forever frozen still -- Ed Sheeran "Photograph"

When it started to become clear that our man-child was sicker than just a little bit sick and that I might quite possibly need to be prepared to spend more time with him at home rather than working, I realised I was missing something.

Music was missing from our house.  And I needed music more than anything.

We had moved into our flat in January and setting up the stereo was something we just never got around to.  It was out, on the floor, but not set up and unplayable. Besides which, our stereo is barely 21st century technology.  I suspect it isn't.  I suspect its a decent still-working relic of the 90's.  Speakers and speaker wire, volume knob, equaliser, 5-disc CD carousel and...wait for it...a tape deck.  An actual bona fide tape deck.  

Looking back I realise that music has always been part of my life.  I grew up listening to my parents' Abba and Boney M vinyl records. When my dad was particularly nostalgic it was Scottish bagpipes bouncing off the ceiling, or one of the crooners and Doris Day. My mother took me to classical concerts where I first learnt of the power of music and how much it can evoke an emotional response. I played the piano and the clarinet and sang in choirs all through my youth.  At university my favourite paper was tracking music and literature together through history. I still play the piano. I still sing (the clarinet is long-retired). Music is more than just a part of my life; it is embedded in it.

My husband also grew up with the radio playing in his house.  He was raised to the tune of Radio Sport New Zealand.  

So I realised that if music was to be re-introduced in our house, it was going to be up to me.

I looked at that silver and orange piece of still-working-but-not-set-up 90's retro technology and I made a decision. I bought a perfectly good retro table, painted it, placed it in exactly the right spot by a power outlet and voila!  The stereo had a home and was set up and working again within a day or two.

I fondly reacquainted myself with Ken and Anna from More FM when I tuned in my favourite station (okay truthfully we had never lost touch since I am with them every morning in my little Honda Fit and just ask me to turn down the volume and you'll get "the look.") However, while the 5 disc CD carousel worked perfectly well (we won't talk about the tape deck) I realised my CD collection was...sad.  To put it rather kindly. Where was Lorde? Coldplay? Hozier? Nickelback (one for the Canadians)? Sam Smith? Oh how sad.

So Google and I had a date.  Since we were building a new house, I decided to research just what exactly this Gen X family needed to do to get set up with music again. We needed to get with the programme. We needed to get up to date. We needed to modernise. 

During my Google date there was a fair bit of furrowing my brow at the options ahead of us. I suddenly had deep respect for the elderly who have embraced cell phones.  I understand!

Thankfully, with my skills in "keeping it simple (stupid!)" I discovered that one portable speaker system with blue tooth was all I needed.  I quickly narrowed down exactly which one would suit us best, found it on sale, heard a demo in the shop (thus discovering Pandora Radio but pretending I knew about it all along) and came home with my Marley speaker.  

The Marley is now my best friend and I'm rather fond of Pandora too. In fact, more than once I have asked them both where they've been all my life. Ed Sheeran is my station and if you don't believe me, you'll have to try it for yourself because when I say the song selection is exactly right, I am speaking Truth.  Seriously. Every time.

Music now plays constantly in our house. Well, not quite.  The man-child seems to have inherited his grandparents' "appreciation" for music (from his father's side). Actually, in his case, it's more of a phobia but I'm working on that.  But since he's asleep A LOT, music now plays almost constantly in our house.

As a music lover, it is always the music I hear first: the tune, the melody, the harmonies, the cadence, the instruments working together, the rhythm.  The lyrics are always secondary to me.  I've been known to sing along to songs without having a clue as to what I'm actually singing.  Must remember to work on that now that the kiddeos are actually listening to the music I am singing.

So the Marley and Pandora conspired to greet me with a song the other day.  It was an Ed Sheeran song that I hadn't heard before.  Ed Sheeran is almost always perfect all of the time (who didn't sit through the credits of The Desolation of Smaug to listen to "I See Fire," tears streaming?!?), but I knew deep down that this song was something else.  It was just the tune at first and those drums! I loved it instantly but the next time I heard it I listened more carefully to the words to see how well lyrics and music worked together.  I have to tell you, a lump caught in my throat.  They worked well.  So well.

Then I went to Youtube to find the official video.  And settled in with a whole box of tissues.

It's a perfect song. Perfect lyrics. Perfect video. For me, for now, for the man-child.  And this is why I love music and why it is embedded in me; music speaks the words I can't.

"Photograph", by Ed Sheeran (lyrics to follow).


Loving can hurt
Loving can hurt sometimes
But it's the only thing
That I know

And when it gets hard
You know it can get hard sometimes
It is the only thing that makes us feel alive

We keep this love in a photograph
We made these memories for ourselves
Where our eyes are never closing
Hearts are never broken
And times are forever frozen still

So you can keep me
Inside the pocket
Of your ripped jeans
Holdin' me closer
Til our eyes meet
You won't ever be alone
Wait for me to come home

Loving can heal
Loving can mend your soul
And is the only thing
That I know (know)
I swear it will get easier
Remember that with every piece of ya
And it's the only thing we take with us when we die

We keep this love in a photograph
We make these memories for ourselves
Where our eyes are never closing
Our hearts were never broken
And times forever frozen still
So you can keep me
Inside the pocket
Of your ripped jeans
Holdin' me closer
Till our eyes meet
You won't ever be alone

And if you hurt me
Well that's ok baby only words bleed
Inside these pages you just hold me
And I won't ever let you go

Wait for me to come home
Wait for me to come home
Wait for me to come home
Wait for me to come home

Oh you can fit me
Inside the necklace you got when you were 16
Next to your heartbeat
Where I should be
Keep it deep within your soul

And if you hurt me
Well that's ok baby only words bleed
Inside these pages you just hold me
And I won't ever let you go

When I'm away
I will remember how you kissed me
Under the lamppost
Back on 6th street
Hearing you whisper through the phone
Wait for me to come home

Chronic Fatigue Syndrome and Hope

posted by Susan Dominikovich on , , , , , , ,

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For those of you who don't know, our eldest was diagnosed with Chronic Fatigue Syndrome about a month ago.  I use the word "about" rather loosely because its easy to lose track of time when the days of waiting turn into weeks and so on.  What I do know is that he started to droop in the middle of February after only a few weeks of school.  And not long after that, the droop turned into excessive tiredness and fatigue, the likes of which his doctors have never seen before. Since then we've been to countless consultations, appointments and examinations.  Chronic Fatigue Syndrome is a diagnosis of exclusion so he had to be tested for everything first.  He's had a night in our local hospital, a trip to Palmerston North, an MRI, EEG, lumbar puncture as well as numerous blood tests.  And sure enough, every single test was negative. No smoking gun. Only theories.

Chronic Fatigue Syndrome was all that was left. 

The road ahead is unclear. We don't know how to ease his symptoms and we don't know how long he will suffer. All we can do is guess so the road ahead involves trials of different drugs and therapies. The road is a storm which leaves this mama's heart torn in two equal parts: one part frightened and one part hopeful. With each drug we try I am as much frightened of the consequences as I am hopeful that it will make a difference.  This time.

We have beautiful friends. Amazing friends who support us practically and emotionally. I am grateful for them and quite frankly I don't know what I'd do without them.

Yet with every hug and with every conversation and with every offer of love and affection from them, I have found myself needing something they cannot give me. I ache for a look or a word from someone which says, "I get this; I understand." Someone who gets the unpredictability of chronic illness and of living every day with uncertainty. And the look in their eyes or the catch in their voice would convey more than the words themselves.

Today I got that.

It is Mother's Day In Canada and I rang my mum who is living in an Intensive Care ward of the hospital on Vancouver Island.  My mum, who has suffered from chronic illness almost all of my life, spoke to me with a gentle smile in her voice and listened as I described the rhythm of our life and that some days are harder than others but we still hope and we still persevere. She simply said, "That's all you can do." 

That's all you can do.

And it meant so much, because of course, she knows.  She gets this; she understands.

Happy Mother's day to the woman who has taught me what I need to know about hope and perseverance.

For this day, today.  Right now.