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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).


"Photograph"

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


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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.



An Update and a Turning Point


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Time for an update.

A little over two years ago after launching this blog I wrote the following words in a post about Me, who I am what I am doing here:

It isn't possible to blog at this level, to write of things that you hope will challenge, provoke, sometimes entertain and possibly even inspire others, without also being vulnerable.  If I were worried about privacy or how to share without sharing too much, there would be no point in even writing one more word.  And I, like everyone, have had experiences which make me far more guarded and protective than ever before.  But therein lies the point.  I've been on a journey.  A crazy one.  Everyone is on a journey and everyone has a story.  A great story.

I love other people's stories and I follow their blogs.  I have conversations with people and I ask questions.  I am not afraid to push a little deeper; I am not afraid that I may appear to be prying.  In my experience, people yearn to tell their stories.  I rarely get the brush off.  And there is a reason for this.  People need to tell their stories because they yearn to be connected.  In her research into shame and vulnerability Brene Brown discovered that the people to whom she refers as "whole-hearted" are people who "understand that what makes them vulnerable, makes them beautiful."  These are people who have courage, compassion and connection with others, and I love that Brown defines courage as "to tell the story of who you are with your whole heart."  Whole-heartedness.  The secret's out; my journey of vulnerability is in fact my desire to be whole-hearted. 


Two years later and every word still holds true.  In fact, having had my openness and unguardedness exploited, threatened and betrayed makes this even more an exercise in whole-heartedness and vulnerability.  However, it is now much less an adventure and much more a discipline.  It is something which requires courage and faith in which to proceed. It's a journey full of risk and uncertainty.

What has changed in these two years is some of the peripheral stuff of life, the situational trappings which shape and ground us. We no longer live in a small town in New Zealand, but a small city. We rent but are building a house nearby. Our children no longer attend a small country school but are enrolled in big city schools. I am still in love with the New Zealand landscape but with it comes the sadness of knowing it is not my own.  I am no longer teaching as I take care of our eldest child who is unwell.

Because chronic illness is now a part of our story. 

I am still a woman of faith but that faith is being challenged. Actually everything is being challenged.

I'm millennial in my thinking rather than Gen-x. I look for insight and wisdom from women like Rachel Held Evans and Sarah Bessey but I savour and mull everything without coming to any conclusions.  Yet.  It's a time of wandering and exploring amongst the one and only thing that I do know which is that there is no place for me in the modern evangelical Christian church. 

And so this is a turning point as I acknowledge out loud all of these things.

I also acknowledge that my faith is not and never has been in the church; and my faith in God has never let me down.

I am Susan Dominikovich:

Mother
Lover
Writer
Daughter/Sister
Friend
Beloved

From Fractious to Sleeping...So much Sleeping


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Not long after the man-child was brought into this world thirteen and a half years ago--rather unceremoniously with forceps and a great deal of tugging--he grew fractious.

Fractious.

It's a word known to mothers world-wide.  Fractious.  I am sure every language has a word to describe the same condition:  inconsolable, crying, not sleeping, crying, red-in-the-face, crying, tight-fisted, crying baby.  All summarised in a single word:  fractious.

It's a word that still raises the hair on the back of my neck.

Because not long after my bonny newborn 9 pound boy was deemed "fractious," he was whisked away from me and taken to the neonatal unit.  I was told he had a fever and a fever meant infection and in a newborn, a fever that meant infection meant danger very quickly. There was a lot of action in my little 2 x 2 room that night leading up to the moment of the whisking away.  And there was a lot of me protesting, "he's just hot; it's hot in here."

So they took him to the neonatal unit, my giant among pre-term infants, and performed a number of tests including a lumbar puncture, to discover the cause of the infection.  But in the meantime he was administered a drip and broad spectrum antibiotics.  The nurse called me down four-hourly to feed him.  Other than that, I was not needed.  In fact, in that I also was not needed since he was being fed by drip anyway.  I was left to blubber away my two day blues (who said it was three?) without my baby back in my 2 x 2 very hot room.

Lucky I wasn't a blogger back then.  

Turns out, he was dehydrated.  No infection, no disease, no illness.  Just plain ol' dehydrated because my milk didn't come in quickly enough for his big baby needs.  And within three days my boy was back in my arms.  But in that time of separation, one thing became very clear to both his parents:  our boy was no ordinary child.

And I was not wrong.  That boy with those eyes; those eyes that looked and saw so much.

Fast forward.

The man-child is thirteen but going on twenty according to his height.  He stands and looks down on me, ever-so-slightly.

If fractious means "does not sleep," then he is definitely not fractious.  He is sleeping.

He is sleeping too much.  And has been, off and on for six months.

What we initially thought was an emotional response to bullying and unhappiness at school half a year ago no longer fits.  The fatigue overtook him even when he was happy and safe at the small school we attended at the end of last year.  He couldn't fully attend his own end-of-year concert except to accept a gift from his teacher and a speech of gratitude. Then we moved and went away on holiday and remarkably he came right again for awhile. We had a fabulous summer full of adventures, which set us all up for a fantastic start to a new house, new city and new schools in the new year.

And it was wonderful.  It absolutely was.  Our man-child went off to high school with his head held high and he approached the challenges he faced (because let's face it, high school is a challenge for EVERYBODY) with courage and conviction and positivity.  We were so proud of him and even just a little bit amazed.

Until the fatigue overtook him again mid-February.  It hasn't eased this time, but has grown steadily worse as the weeks have passed.

He sleeps.  He sleeps a lot.

So now the man-child and our family are on a journey.  It's a journey which involves specialists and hospital visits and tests and ruling out rather than finding answers.  A journey which cannot and does not plan anything except wait and see.  A journey which celebrates each laugh and joke together at the dinner table and which savours the couch-cuddles in front of Doctor Who, but which also understands the laying down of the head and rest. This is definitely a journey of rest.

And ultimately, it's a journey of faith.  Because a journey without faith isn't much of a journey at all; it's more of an aimless wandering.  Or a stab in the dark.  


Using the Cheat Code


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I was happily washing the dishes the other day, thinking about autumn layers and what goes with what while the man-child sat playing Minecraft on the laptop. It is not a silent thing, this boy playing with virtual worlds and I usually let him alone with his self-talk, tuning in only when something in particular was directed at me. Suddenly I heard the word "cheat."

Suds on dishes, I stopped and said, "what did you just say?" Because this family does not cheat.  Ever.

"Well it's not like I'm trying to win or anything," he explained.  "I'm just going to cheat with a code to turn the storm off."

In my mind this was still cheating. Clearly the storm is there for a purpose in the game. It's supposed to challenge the player, get him or her to learn to problem-solve.  The teacher in me knows this is a good thing.

So I probed and asked, "What's wrong with a storm?"

In an instant, the man-child said, "storms cause fires and they hurt people."

Storms cause fires and they hurt people.

Yes. Yes they do.

My family has weathered a few storms recently. In the scheme of things, we endured some heavy wind. Maybe a bit of hail and the odd thunderstorm thrown in. At the time scary enough but probably because we didn't know if the storm would ease or in fact increase in intensity. The storm challenged us and we learned to problem-solve. In fact, we learned to batten down the hatches and grew stronger for it.

But sometimes, storms cause fire and they hurt people.

I wonder how many of us would like to know the cheat code to stop the storms?

I get it, dear man-child of mine.  Carry on.