feeling weary

It's Saturday lunch time, and I haven't had treatment this week.

I feel entitled to some energy, some clarity of thought, some break from the relentless fatigue.

But I'm just worn out today.

So when do I know I've got more get-up-and-go? First thing in the morning Huz and I hear Soul through the baby monitor that's still in his room. We can often hear him chatting away to himself or laughing, and when I go down to get him he's cuddling his teddies, or playing with his blankets - kicking his feet up into the air inside his sleeping bag.

And that's when I know. If I hear Soul and feel like jumping straight out of bed to get him then I must be feeling more like my old self. The me who loved to get up at 6am and go for a walk outside before coming into breakfast and to get the family up for the day. The me who used to work (from home) from 5.30-8.30am everyday at the kitchen table.

I love early mornings. 

The whole day is ahead and is delicious with possibilities. It's quiet and full of anticipation and my mind is at its best: planning and hoping and thinking through the day.

This chemo has made me understand Huz who is definitely not a morning person. You know the type: the alarm (or wife) goes off and the not-morning person will groan, turn over in bed and hide under the covers until absolutely the last second possible.

Now that's me too.

The primal desire for more rest, more sleep, more time in those cozy covers overpowers. 

The boys, (and in particular) True is my alarm, coming in at 7am on the dot and not often a minute later. My favourite mornings are the ones they are happy to sneak into bed next to me wrapping their legs and arms around me to keep warm, and talking in semi-whispered tones.

I love that time to be close, and have my favourite people near. Before the demands of the day get in the way and no one can find even one set of uniform pants to go to school, and there's a time out and only weet bix for breakfast instead of rice bubbles due to some offence. Before the crazy hits.

I like the quiet time before that.

But lots of time it's messy. Wee on the toilet seat and bathroom floor. Boys who make forts in their bedroom waaayyyy before morning. Arguments over who was playing with that toy first, or which of the older boys turn it is to have 'special time' with Soul in his cot. It's the messy and the beautiful intertwined, and I don't think they could be separated even if I tried.

Bottom line. I love my people. They're the best.

getting in trouble

Naughtiest child in the house at the moment?

True. Definitely True.

It's a cyclic thing around here. Usually the boys pretty much take turns, and the boys who are not currently the record holder for naughty behaviour enjoy what Huz and I call, 'taking the high road' which usually (but not always) includes frequent reminders to naughty child exactly why they are being naughty, and to watch out because they don't want another time out believe you me, and an array of other haughty-taughty 'holier-than-thou' kinda vibes get put out there too.

It'll only be a day or so until the roles reverse. Then aforementioned naughty child is 'taking the high road' and 'holier-than-thou' child is humbled and now deemed the naughty one.

Being 6 must be pretty hard cos True has been the naughty child for a little longer than the regular 1-2 day spectrum.

It can't help that he's smart enough to at times call my bluff as I attempt to discipline from the couch (!). Suppose it only takes a little while to see that whilst Mum sounds cross, looks cross and is demanding he goes to time out…well..now…what's she really going to actually do about it. Get up? Ha! She hasn't moved for a week now! She's not likely to waste her first move on hauling my sorry self to time out he thinks.

But this time he was mistaken. oh yes. Mum moved.

Perhaps it was the pent up emotion of being on that couch for so long. Perhaps it was the cheeky smile True gave me followed up by his signature scowl. Whatever it was, I had decided the offence demanded a smack. On the hand. Right here right now. That'll learn him.

So True begs me not to. 'I'm sorry Mum, really I'm sorry'. 'It's too late' I reply. 'When Mummy asks you to go to time out you don't argue' and with that I go to smack his palm…and pretty much completely miss. 

There is no satisfying sound. 

There is no lesson learned. 

There is still a little hand waiting for it's punishment.

There is just this feeling welling up in me wanting to burst out laughing. It's ridiculous all this being sick all the time and all this staggering off the couch, and all this failing, all this missing the mark.

All it takes is True looking at me with his big eyelashes a little confused, and my gaffawing laughter has me with head thrown back.

Poor True. He's confused. Then I draw him close and we cuddle and laugh. Just keep cuddling and we're still laughing.

Oh dear. What have I done.

Could this all be a little scarring? I mean, discipline is serious. Discipline is all about my True respecting adults and behaving appropriately, and I've just gone and ruined six years of…of…well of something important.

So that was that. Me back to my couch and True to playing with the cars.

It's such a beautiful mess this life of mine. Such a beautiful, blessed, messy messy life.

I am more than blessed.

mayhem

Mayhem just walked out my front door and took with it my three sons and husband. 

The sheer willpower it takes to get all three ready for school/childcare looking like their parents care about them (i.e. dressed in correct uniform, bags containing lunch, teeth brushed and hair even possibly combed) is a multilayered task that I am sure uses every skill set Huz and I have acquired with our four university degrees between us.

The negotiation and people management alone should qualify me for a high paying role in a big corporation somewhere. I'm thinking of updating my resume…

But when mayhem left so did the fun. 

I listen to their chatter and footsteps on the deck, and then the 'click' of the gate and they're off. My tribe.

Now its just me here, with my water bag on my lower back, and I'm nestled in my 'spot' on the couch with the white pillow. I spend hours on this couch in the days following chemo. Technically I shouldn't need to gravitate here today. It's a week off chemo, and I should be full of beans and ready to go out into the big wide world and do all those things I've been dreaming of the past three weeks when I've been feeling so awful.

But here I am.

Maybe a bit of confidence knocked out of my sails, maybe I don't know how to be 'normal' anymore. Maybe there's just not much that I feel like doing to drag myself away from being all cozy.

I think it's got more to do with what I don't like to admit. 

I'm exhausted.

From treatment, from the CT scan a couple of days ago. From appointments with Dr K, from port access and blood tests. From Tennyson Centre where I go to have all this fun. From the cough and cold that I can't shake for the past three weeks. From the ever present anaemia.

It's not just the medical stuff though. I'm emotionally exhausted from the constant processing of this diagnosis, of what it means to have breast cancer spread throughout my body, of what the images from the scan looked like with all the tumours in my liver and bones. With knowing that when my back aches it's not muscular, but instead it's the holes in my bones from the tumours that are the cause. 

Yuck.

The CT scan showed that the cancer is stable. A good outcome by Dr K's standards. By my standards, it just sounds like a C+ when I was really after an A + for shrinking tumours.

I promise I will study harder for the next cancer exam.

But then, that's the problem isn't it?

Doesn't matter how faithfully I turn up each week for port access, blood work, appointments and chemotherapy, with a happy face on and a great attitude, then back home to lay on the couch with exhaustion for the next 6-7 days before I face it all again…well…look who's cancer doesn't really care. 

Yup. My cancer doesn't care.

I guess cancer is a hard task master, and an unreasonable one at that. Best to not look him straight in the eye in case he gets mad. I'll just keep sneaking in the chemo to beat him back and maybe he won't get so cross in the future. 

10,000 points and nobody understands why

Oh my goodness, the life of a cancer patient is constantly bombarded by unwelcome, scary numbers.

I don't even care much for numbers. Maths at school was always my dreaded lesson, Dad spending literally hours tutoring me at home with his brilliant mathematical mind that left me behind daydreaming about how to escape having to ever use maths in my actual life.

Now it's my actual life.

Somehow Huz and I are still taken aback, and even shocked when tumor markers or CAT scans or MRI's come back with bad news. Yesterday it was a tumor marker of 10, 000 (a healthy number is about 130) that has skyrocketed from 7,000 even since last month, making my doctor question if the treatment is even working.

The scans I had only last month showed tumor reduction, but I'm still getting blood transfusions every couple of weeks and the numbers of my red blood cell count keep dropping, so something is very wrong.

My heart should know that this is what my stage IV diagnosis meant those four months ago. My heart should have done its crying and now understand that this number isn't 'newsworthy' as such…it's actually exactly what we were told would happen. 

Treatment works for awhile and then it stops working. Tumors grow. I change chemo's. I pray it will work. I know that my God has the full picture even if my doctor doesn't.

Numbers frustrate me.

Being in bed or on the couch all day with exhaustion frustrates me.

Dr K seems baffled. He told us he's never had a patient in 35 years who has remained anaemic for this long.

I guess I'm just that special;)

Let's just say there was a fresh round of tears from me last night, and a fresh reminder that it's God who holds me and I am completely out of control at this point. It's all I can do to keep holding His hand. 

Thank goodness I know He would never let go of mine.

at the feet of Soul

It's a Saturday afternoon and the five of us are gathered in the living room waiting for pizza and watching the movie, 'Turbo'. Somehow I've managed to monopolise the heater (my favourite is laying spread out in front of it) and you're next to me Soul. You are busy playing with a puzzle and some sort of sorting game.

And all in a flash flood of emotion I'm looking at your little feet, fresh out of the bath, and I'm wondering where these feet will carry you in your life, the places you will go, what your passions and desires will be. And I feel it well up like a flash flood, this longing to see you grow, and have those late night conversations, and glimpse your heart, and for you to hear me tell you I love you, and for you to be old enough to remember it, know it, be without any doubt that you are deeply keenly loved by me. And it overwhelms me for a minute, so I grab that little foot and kiss it, knowing that it's not in my destiny to be here for the milestones that will gather and see you a grown man…And the ache of this takes the rest of the movie to settle into deeper places in my spirit - not gone - just put away into a safer place that won't threaten to pop out at any moment like that 'Jack In A Box' one of you boys were given.

So here I am thinking about you Soul. How I love your cheeky expression when you get your way, or your quick succession of, 'sorry, sorry, sorry mum' when you know you've misbehaved. I adore your big eyes, your air kisses and your ever growing array of sentences. 

But I'm greedy.

I want to see you start school. See you join a basketball club. Help teach you how to ride a bike. I want to watch you grow into a gangly teenager who eats me out of house and home and who is much much taller than I am. I want to meet your first girlfriend, I want to be your confidant as you seek out who God has created you to be. I want to welcome your wife into our family.

Oh my goodness I want too much Soul.

And it's greedy of me because I longed with all my soul for you my darling after two miscarriages, and you are unashamedly the biggest miracle of my whole life. My joy was complete when I gave birth to you my third boy. God has big, beautiful, crazy, better-than-you-can-imagine plans for you.

I just ache because I so badly want to be a part of those plans.

So, here I am thinking of you, wanting to burn the memory of you into my very spirit, and wishing badly I could make all of the yuck that's happening/going to happen with me being sick just go away so we could always be together.

But I'll remind you as I'm reminding myself tonight that God is good and it's His hand that we hold as we go through this trial. We are not forgotten, and in the deepest part of me I am already looking forward to our family being together again in heaven. 

He Who has promised is faithful.

I love you Soul.

xx

anniversary

Huz and I celebrated our 'admission into the halls of highest human happiness' on the weekend! 12 years ago we were married at Blackwood Uniting Church with all of our dear family and friends by our sides. It was one of the best days of my life, and a day I will never forget as I married my one true love.

We spent two nights away at a hotel in the city and it was absolute bliss. Having Huz all to myself was unbelievable, and it was so very relaxing. With no schedule or places to have to be we just enjoyed two days of doing whatever took our fancy!

We managed to fit in a candlelit dinner at Vino's on Unley Rd, an amazing breakfast at the hotel the next morning after a relaxed start to the day, did some shopping, caught a movie, had a spa and champagne, and had lots of time for long chats and reconnecting after a hectic and stressful few months.

Our marriage has been a deeply happy one. Without a doubt I think we are the best married couple in the world. We have grown up together and enjoyed all the best life has to offer side by side. We have served together, renovated our house together, parented together, and enjoyed each other's company more than I can say. We have been truly blessed. It's a God thing.

I love our coffee's on the front deck. A chance to have a long chat about whatever takes our fancy. Huz is literally my favourite person in the world. He is an astonishingly wonderful husband, a great listener, he makes me laugh, he is loyal and kind and believes the best in me when I really don't deserve it. He has walked alongside me through thick and thin and he has my whole heart. I am deeply in love with this man.

Huz, I love you with all my heart. It's truly a privilege to have been married to the love of my life for 12 years.

You're my best thing. Definitely.

xx

new pjs = happy boys

Aunty S shopped for snuggly new pi's for the boys this week. It made them all kinds of happy crazy dancing about in their new bedtime wears!

I love bedtime around here. Boys getting into warm pi's in front of the fire, lots of stories read, snuggling together on the couch, sneaking in school readers too, and then into bed with prayers together, little songs to sing and sweet cheeks to kiss to sleep as we tuck them in. Fun.

This week I have been rocking out my new beanie with the 'pon pom' that Soul loves so much. Not as cute as the boys in pi's, but keeps my head toasty in all this fog and rainy weather we have had in lil' old Adelaide this past week.

I love snuggling up in my cozy blankets on the couch with the fire blazing while I listen to the rain bucket down. Now all I need is the energy to make a cup of hot chocolate and I'll be all set!

starting taxol with a side of transfusion

Taxol was pitched to me as a low maintenance chemotherapy drug -  or at least one with very minor side effects. One that would get down and dirty with cancer while I carried on with life pretty much aside from perhaps a day or two of feeling more tired than usual.

Umm...not exactly accurate in my case!

After my initial infusion almost three weeks ago I was overcome with fatigue to the point of not lifting my head off my pillow for any extended length of time until day before the next infusion. Every fibre of my being felt deeply tired. With a HG count of 71 instead of 100 it made sense. However, for whatever reason the blood transfusion has been unable to keep my numbers up. Dr K thinks this is perhaps due to the cancer in my bone marrow, or perhaps some very slow internal bleeding somewhere (what the?) but whatever the case I have had two more transfusions to boot, and today am still knackered. Sigh.

Only two months ago I was racing the boys around, running my household, and getting stuck into life. I really am chained to my bed or the couch at the moment. Just such a sudden and unwelcome aspect.

Praying for a heart that is anchored in Jesus during this storm. 

My daily work is to trust my Jesus. To not focus on the waves and the rising ocean, but to fix my eyes on Christ. 

This is such hourly, minutely, secondly work. I fail and I fall and I struggle to get up and trust Him. With each appointment and with each day of exhaustion, and with each day of seeing my family get on with life without me it is WORK to trust, because I can't make any sense of this thing and there's hardly any respite.The difficult days are by far outweighing the easy and light days and so it is work to put aside my interpretation of my circumstance and look to Jesus and in the deepest place in my heart trust Him.

But it is my daily work, and i will keep on. 

Glad God doesn't mind baby steps.

A trip on bikes to Glenelg the day before my treatment starts

Heading off to a party my sweet friends threw for me

sports day

True and Brave had sports day today at Belair National Park in the drizzling rain. It's the day that all the minutes of practicing hurdles (over kids picnic chairs on the front lawn) was about to pay off. 

I had told the boys I would do my absolute best to come and watch, but that if I couldn't come cos I was too tired, that I would ask Gramps to take some video so I could see it later. When Mum and I got there we could see Gramps with his camera following them around. He is the absolute best Dad and Gramps ever. Reminds me of how he captured almost every single minute of my own childhood on camera. All the mundane and the sensational. Love that.

Laying in bed this morning, and dozing in and out of sleeping and hot flushes and feeling disheartened I wasn't there cheering them on was one of those hard days when it's clear I'm not in control of my days and the impact on my boys is not one I would welcome. I wanted to be there the whole day, dammit. I wanted to be all up in the action, cheering them on, wearing red war paint myself. 

But it's ok. It's just not how I wanted it.

My lovely Mum drove out to the park in the hopes that the boys might be competing in events near where we could park the car so I could watch. We didn't manage to get too close, but with the help of some trusty binoculars (sorry other parents who thought I was keeping a sharp peeping Tom eye on your kids!) I did see True race and caught a glimpse of Brave play volleyball.

If only True and Brave had known mama was there.

And the deep sorrow of many years to come of mum not attending dampens my mood this afternoon. I've taken on some cares of tomorrow by the looks of my messy heart.

It's the skipping ahead days and months and years that will do my head in if I let it. The jumping ahead to sports days, and birthdays, and school awards that will make me feel ripped off and jaded that it's all going to be 'taken away'...

But nothing has been taken away because all of life, even this very day is a gift, a total gift, that I can't make happen myself or orchestrate even if I wanted. No one can add even one day to their life by worrying. And my Jesus said it so I know it can be trusted. I know that it is true. Besides, if I had a choice I wouldn't be adding a day, but a lifetime to cuddle and play and enjoy and give time outs to my sweet boy brood.

One extra day wouldn't be enough.

So I'll lay aside not being able to get out and cheer at sports day. I'll thank you Jesus for my Dad who is out there in the drizzle now filming the boys athletics. They will know they are loved, and it is a wider and deeper love than just what one mama can give: these boys of mine have the love of a Heavenly Father who will provide for all their needs, come what may.

A safer love than just what I can give them alone. And so my heart is thankful.

hair gone

I heard the door open and shut. I can't mistake the sound of my love coming home. I look forward to that sound all day. 

He's let in the cat, or maybe he's let the cat out; hard to tell, but the boys are making a fuss of it all. I breathe out slowly. I've remembered what we agreed had to be done today. My hair has started to fall out days ago. I'm covered with itchy, gross, wayward stray strands that won't stay where I want them anymore. I've begun to avoid running my hands through my hair at all...really don't want to pull out a clump.

He's quietly set up a chair and the razor in the bathroom. The second time he has shaved his wife's head. Not the maiden voyage. No uncertainty about how I will look. We have travelled this before.

Last time, two years prior, our little True about four years old at the time watched without blinking as the hair fell down, piles of long fair locks cascading down on the grey tile in ribbons. One minute a crowning glory and the next swept up and binned.

What a difference a day makes.

This time True and Brave begged for their heads to be 'made bald', and the night before they had followed through and the #1 all over had thrilled them to the core - running around the house in an excited frenzy-all baited breath over their new look. And the feel! I couldn't stop running my hands over those perfectly formed, sweet heads...eyes that looked ten times the size and sweet soft skin of cheeks softening the stark impression.

But me?

Freckled skin on cheeks, eyebrows threatening to abandon ship. Wrinkles around eyes deepening with lack of hair, and no protection for tired drawn expression thanks to chemotherapy and anaemia. 

And when I take my seat in the bathroom ready to just get it done, the last time floods back and it all tastes like deja vu and the tears I don't want to fall just come anyway, and it's pathetic, and Huz says he is so sorry to have to do this my love. And I know he is. Know he feels bad for me. But it doesn't feel like pity, just him being on my side. 

When he has cut off the longest locks his phone rings. A work emergency. He has to answer, but why now? Why when I look like a beast in this cropped hair? 

At least the boys have abandoned the jumping in the bath game they have played as they watched me and now they are watching 'Clifford the Big Red Dog'. I'm grateful they don't see the tears. But this time I don't cover my head as soon as I'm done. I don't bother. These boys of mine can't be protected from it all like I tried so hard to do last time. They must be made to see. Must be allowed to see the sickness in Mummy. 

And it breaks me. 

i love huz

Dear huz

I am all busy thinking about how well you love me, how deep we have traveled together over the past 11 years of our marriage. We have loved one another with all our hearts from the very beginning, and I can't imagine the person I would be without you. I actually can't imagine the girl I would be...most likely lots more fiesty ; )

I woke up all out of sorts this morning. The morning of Brave's 5th birthday party, and the emotional struggle I was facing in planning to go along. There will be many many more birthdays ahead that I won't be able to attend. So many celebrations I will miss out on. The sick feeling in my stomach gave witness to the desire to be there today and the fear of going and having to face countlless school parents with well meaning questions. I couldn't do it. Couldn't bring myself to go. And you knew Huz. The whole time you knew my heart and why I was a mess.

And when you just spoke it aloud to me, and I heard the thoughts in my heart reflected exactly, it just made me fall to pieces. And when you held me and just let me crumple up, there was a kind of healing in the deep hurting place I was protecting.

Truth is that I'm not very brave.

Truth is that I want to think I can just push on, but my heart has taken a big old beating in these last few weeks.

Truth is that when I talked to Brave about how mummy was really tired and didn't think she could come to his party he was totally fine with it, and said, 'I wish you could come mummy but I will tell you all about it'. 

Thankyou Jesus for the grace from a 5 year old, and the deep love of my husband.

I am more than blessed.

birthday pancake brekkie for Brave

extra chicken or a broom with that?

This week Grandad did a head count of our chooks. Came up as 6. Problem was that we used to have 6 chooks and then 'chocolate' one of them got sick and had to be buried a couple of months ago. Hmmm. Something had to be wrong with that head count then.

True helped Grandad bury that little chooky, so today he was super baffled and suggested we check the hole to make sure she hadn't come back to life!!

Turns out our neighbours chook went for a little walk across the road, and Huz and Brave let her in when they saw her wandering around our yard. 

Problem solved.

Phew. I was starting to wonder how they had begun to multiply before our very eyes!



Just a little funny quote to add: The boys were about to head out to Brave's 5th birthday party at the park, and I wanted to brush their hair after their shower. When I got out the brush, True asked me why I was BROOMING Brave's hair. 

Brooming! 

Oh my I really need to brush their hair more often!!

It's called a BRUSH my boys. A brush.

xx

a splendid day

One must wait until the evening to see how splendid the day has been.
Sophocles

I love this. Because you just never know what joys today might hold. And sometimes those joys don't surface until later in the day. 

I want to 'gut-believe' in the good touch of God. (Ann Voskamp, One Thousand Gifts) 

But until it's my default to believe in His fierce love and protection, I am naming the good things He gives me each day to remind myself that even when the day is bleak, He is with me.

One of the clearest things God has ever said to me was when I had a long scan of some sort right back in 2011 when I was first being diagnosed with cancer. I was laying in this huge machine and got to about halfway through the 20 mins when I started to panic and wanted to just get out. 

I felt Him say, 'Beloved, I am here'. 

Immediately I calmed, my heart rate slowed and I felt entirely calm. 

He was here.

That was all I needed.

The scan finished up and I got out. To anyone else it was just a routine check, and I was the poor girl just being diagnosed. But I felt the presence of God, and He had made the inside of that machine holy ground.

So typical that my Jesus would make a moment so ordinary, so mundane and so ikky into something more. He's rad like that.

i feel good...I knew that I would now!

I am almost out of days until I start my next round of chemo, but am beyond thrilled that today I actually have started to feel 'normal'! Oh my, today I actually went out for coffee with my gorgeous friends Sal and Chelsea and it has literally been two whole months since I have been practically anywhere. (Sal and I even fit in a quick trip to the op-shop...ahhh bliss..I adore a good op-shop outing) 

It felt so strange to get dressed in something other than trakkies and bedsocks. I'm so glad they took me out though - It's been hard to keep perspective being at home in bed for so many days straight. When I got home I immediately wanted to go out again! Don't make me sit in my house unless I absolutely have to...i've had enough of being in my room to last a lifetime.

Then I read this as I was lazing by the heater in the afternoon:

'You would be very ashamed if you knew what the experiences you call setbacks, upheavals, pointless disturbances, and tedious annoyances really are. You would realize that your complaints about them are nothing more nor less than blasphemies - though that never occurs to you. Nothing happens to you except by the will of God, and yet God's beloved children curse it because they do not know it for what it is'.
One Thousand Gifts
Ann Voskamp

Hmm.

That is extremely challenging for me at the moment. 

I have lost almost total control of every.single.part.of.my.life. 

I have family and friends helping with everything from meals to childcare to transporting my boys around, to taking them to the doctor. We have just enrolled Soul in childcare, and True and Brave will be going to after school care a couple of afternoons in a row. Our church family and neighbours have been making us meals, and my beautiful mum and mother-in-law have been cleaning and washing and tidying and putting away on repeat for the last few months continually.

That overwhelms me.

That feels like I'm letting the 'we are healthy people' down.

Actually I would love to be able to help someone else the way we are being helped, but instead I am on the receiving end. 

That feels harder in some ways. I like very much to be self sufficient.

Anyway.

This experience which I'm walking absolutely feels like an interruption (that's an understatement) and I have complained sometimes aloud and lots and lots in my head about the hardship of this cancer.

And so, 'nothing happens to you except by the will of God'. This is pretty full on to take in. I need to change my theology! It has always comforted me that God is 'sovereign' and absolutely holds the whole world in the palm of His hand. I love that I can have this as the bedrock of my faith. God isn't going to change. He is in control.

But.

That leaves me reeling a little when I think about all the grief I am walking through thinking about leaving my boys so young, leaving my Huz when I want 50 more years of being married to my incredible husband. When I think of all the 'life' I'm no longer participating in as I lay in my bed trying to recover from awful toxic drugs pumped into my body. When I think about the revolting 'cloud of chemo' that shrouds me until the next time I'm due for the same concoction all over again.

It's easy to sink into self-pity. It's easy to want to jump into a big ol' pit and just stay there.

I don't think that's what the God wants for me. The butterflies in the pit of my stomach are showing my desperate desire to control some of this, to write it off as a huge 'interruption' to my life. In so many ways I don't like the thought, but there is a comfort to knowing that this is God's path for me, and He will not let me go. I need to keep holding His hand.

A very wise friend gave me that advice a few years ago when I was first diagnosed. 'I can't choose the circumstance, but I can choose Whose hand I'm going to hold'. This just about sums up the dilemma. And really what would I choose? Him of course. A thousand times Him.

I am more than blessed.

a saturday morning breakdown

Night sweats distort my perception, and the repeated waking makes the night feel tedious. I'm awake now, with boys needing breakfast, a husband needing peace and I'm unfit for duty with this heart all blurry and water coloured. 

It's a full time job to pretend I'm okay. 

I'm not.

Soul is knocking at my locked bedroom door. I've pleaded with Huz to let me have half an hour to cry and be on my own. Writing calms me, and lets the pain take a shape. It's less elusive than the big bad wolf of fear breathing down my neck. At least on paper I can search my heart and the places I've let fear be the hero instead of my Saviour. 

I need a Saviour.

This volume of pain must be measured beyond what I can manage. What must be tonnes and tonnes of heavy worry surely can't be just for me? 

The hours drag out when my bones ache, and my body just won't cooperate to heal. I count down the hours until I can have a bath as a distraction.

And I should really hit the delete button on this post because it's not masquerading as upbeat, it's just the cry of my heart...help me God for the waters are up to my neck.

My hope is being tested in the firey furnace, and I'm crouched on the sidelines with fingers and toes crossed I will come through.

I can hear one of the boys being put in time out. There's crying and wailing, and 'Dadddddyyyy...I want Mummy', and then it's only a second before this changes to, 'sorry Dad, sorry Dad, sorry'. 

Am I that much different from my boys? 

I would make this pain vanish in a second if I could. It's beyond my capacity. I can't choose the path, but I can choose whose hand I am holding as I walk through. 

And I won't be letting go of the hand of God. 

This I know.

murmuring thanks

I'm murmuring thanks soft. 

it's barely audible. 

Mustering up a gladness in my weary bones has been left to the side for the last few weeks, but it's my soul that's going bankrupt in the absence of the thanks. It's revolutionised me before this giving thanks in the mini blessings, the unseen music that I hear playing in the background of doctors visits, desperate prayers to be well, tears that I let sneak down my face when it's just me in the bathroom. Because it's not all sad. It's deep too.

When I swallow the thanks that sparks small and soft I am left empty. Because there's always thanks to be murmured to my Jesus. He sustains me when my soul is heartbroken and I don't know I can wake up and do another day. He is watering the garden in my soul, inhabiting my heart.

Yesterday I woke to terror. The terror of the night where fears roam free and take over, gaining ground and size. Too big for me to reign in, too big to wrestle. Huz held me close, spoke truth to me. It was still early, but True and Brave came in, wrapping little bare arms and legs around me on each side, snuggling as close as possible and showering kisses on my cheeks. 

And my God who sees it all gave this gift just when I was at my lowest. His mercies are new every morning. And I murmured thanks soft because I couldn't help it. And then I remembered how long it has been since I have thanked Him for anything. 

He hasn't stopped giving gifts, both the hard and the welcome ones.

Mothering is at once the hardest and the holiest and the happiest 
(Ann Voscamp One Thousand Gifts)

I never knew being a mother would revolutionise me, break me so I could be mended and see everything entirely differently. God's greatest gift to me in so very many ways. How could I have known? And it's taken me years to get comfortable in it, years to warm up, see how my selfishness needed to be broken into a thousand pieces by ways of little hands and hearts needing all of me when I have longed for silence, peace, less housework.

Jesus you knew what I needed so much better than me. I have been sanctified in so many ways through motherhood. What a gift.

And so this begins my list. My little list of thanks.

aunty A has to go home

Aunty A has to go home this evening. All the way to Turkey, and I'm not ready to say goodbye. It's been such a treat to have her here. She has taken over caring for all of us and I will desperately miss her. 

I've battled today with what I am looking forward to at the moment. Chemo definitely doesn't count. Actually nor does any trip to Tennyson. These appointments are pretty much all that is in my diary. I'm thinking I really need to plan something lovely for this week off! 

My mini miracle has come. The miracle of having an extra portion of energy. I swear my red blood count has upped or at least stayed at the point it was after the extra blood on wednesday. Of course I won't know until I get bloods done on tue, but I am certain it has to be better. This time last week I had my head on the pillow pretty much 24/7 and today I've been sitting up lots, and my mind even feels like it can make a decision or two if push came to shove! An improvement that's for certain.

The best part of an extra shot of energy was feeling good enough to go out with Aunty A for lunch yesterday. We kept it pretty short and easy and just went to one of my favourite spots along the beach just near Glenelg at the Broadway Cafe. 

I can't even put into words how amazing it was to have my beautiful sis with me and have her all to myself to just chat and be with each other. She is such a significant support to me and a huge encouragement as she has been fully journeying alongside us since I was first diagnosed. I am more than blessed. Having two sisters by my side means I never have to feel alone as I process it all. She's leaving tonight, and will drop in this afternoon to say goodbye. Will be very difficult to say goodbye. I've got the Kleenex ready.

Feeling like a lost ship at sea.

round one done!

Taxol round one done baby! For the last three weeks I have had my weekly infusion of taxol and as it happens pretty much a weekly blood transfusion or two thrown in there too. Add in a power port insertion surgery, and it's pretty safe to say I am a hospital dweller through and through.

my pretty orange decolletage after port is put in

The actual infusions themselves have been super straight forward and have been given over 3 or so hours. The blood transfusions are longer depending on how many units - they have taken up to 5 hours in the chair. Lucky those big old plush chairs at Tennyson are so darn comfy.

Huz making me laugh at chemo

The most challenging part without doubt has been the overwhelming fatigue that has made me feel each of my cells are gasping for oxygen, and then laying down on their own individual feather pillows and declaring a strike until I can organize better air flow and working conditions. C'mon little guys! This is when I need you the most and you are totally just laying down on the job. 

Slackers.

With my normal racing around a lie down actually sounds appealing, but this kind of tired has dragged along some unwelcome companions such as boredom (but too stinking exhausted to even play music) and a side serve of mild depression. 
 
Today I feel way less tired than I have done. A little corner of my heart is celebrating, but I'm cautious as day two after chemo is always mild compared to day three and four, so I'm expecting the next couple of days to be bumpy to say the least. 

I'm planning to try a couple of new things in the next few days to detox so I'll have to see if they make any difference at all. I've been drinking warm water with lemon juice squeezed in today - really really yum. Tomorrow I'll be having an epsom salt and lavender oil detox bath and might even throw in an enema if I'm feeling brave. Just want to take things into my own hands a little more instead of just waiting around for my jolly red blood count to hit the roof.

True and Brave are about to be dropped home by Granny & Gramps, Soul is coming round with cousin L and Aunty N and also Aunty A is coming round. She only has two more days here before flying back to Turkey and I'm going to totally lose it when she goes. It has been amazing to have her here. There are no words. When a sister fly's all the way around the world to see you when you are sick you know you are loved!

Aunty A came with me to treatment and some blood tests this past week. She is such sunshine. All the nurses love talking with her and she is just the perfect relaxing companion to take along. 

I just realised though that we havn't managed to take a photo of us together since she's come. No surprise really as I'm not exactly dressing to impress these days and barely ever really feel like having a camera pointed at me, but I have to remember to take some this afternoon amongst all the crazy!

Just one more thing since the boys aren't home yet...

My 'Jesus Calling' has been so very encouraging for my spirit over recent months. A recent theme in my life is all this waiting. Waiting for results. Waiting for this pain to pass, this chemo drip to finish, this afternoon to drag on, this exhaustion to cease. Waiting.

'Waiting on me means directing your attention to Me in hopeful anticipation of what I will do. It entails trusting Me with every fiber of your being instead of trying to figure things out yourself. Waiting on Me is the way I designed you to live; all day every day.' 

Light bulb moment. 

Waiting on God is not like waiting on circumstance. Waiting on God is how I have been designed to live in hopeful anticipation. It's just how to put skin on this when I'm not able to lift my head off the pillow, and my heart is sinking and downcast and it's just all hard work and I'm searching for the sunshine or even the silver lining; I'd take that...but even the lining seems grey.

So what does it look like to trust and wait on Jesus in these times. 

I guess I'm in the middle of learning.

brave's 5th birthday letter

Dear Brave

Tomorrow you are turning 5 years old. And in your words, 'What the hecka?'

Your little baby self is in my minds eye-so little, very petite, deep eyes peering back at me, and a persistent cry reminding me that you are really the boss now that you have arrived. 

You have always had spark. An attitude of defiance sometimes, and a straight forward unapologetic view of yourself and the world. Love that.

You play hard and then crash. I've not ever seen one of the other boys fall asleep in about 12 seconds flat as soon as their head hits the pillow like you do.

When you come in with your little lips pursed to kiss my cheek first thing in the morning, or your cheeky grin (with that dimple I love) tempting me to just scoop you up for a cuddle. Your cuddles are better than medicine. They heal.

And so the dressing up continues with True. You now have your own crazy schemes and plot outlines to contribute, and the giggling and the silliness ramps up even at 6.30am, and gets me all hot under the collar as Dad and i try to steal maybe just a few more minutes sleep. And then I listen in to the banter, and I can't stay mad, can't even wish you'd be quiet, because the two of you together have the strongest bond, the deepest love for each other, and the desperate need to hang out all the time. 

You love animals with passion. We used to say that you 'loved too hard' Brave. But it's changing, and you are loving with a sweetnesss in place of the hard squeeze it used to be, and Galahad likes you. We have been wanting to get you a dog. We will, because I sense it will be one of your 'happy places' in life. One of the things God has gifted you with.

Tomorrow we have Granny & Gramps, Aunty A (back from Turkey for 10 days) Aunty S, and Nana & Grandad coming at 7.30am for a birthday pancake breakfast. You are excited about opening presents, and I am exited about seeing you gorge down your maple syrup and pancakes and be celebrated and gets lots of cuddles and to tell you how glad we are you are here in our family, how we wouldn't want it any other way, how you being here is sunshine and joy and funny sayings, and smelly pops and asking you again and again if you washed your hands after visiting the bathroom, and you are loved Brave. You are deeply loved.

This weekend we have planned a 'space party' for you in Bonython Park. We have invited the whole class, and some special friends from church, and friends from far and wide are going to help cook and run games for you and basically just lavish love and attention on you Brave. Can't wait for you to have an amazing day.

It's always hard to put into concrete words what you boys mean to me. It's vast and it's hard to wrap it up like your presents and cards sitting on my dresser waiting to be given to you. 

The words don't seem large enough, potent enough to spread out loud on this page...just in case you think that 'I love you' is just three words next to each other, and not the feeling of a thousand balloons being let up into the sky at the same time and littering the blue air with colour and joy and abandonment. You are colour and life and a spectrum of bold wonder to me Brave.

Love you Brave,

Love Mummy xx

the best thing since sliced bread

Today I sit at the cancer center, hooked up to receive blood for a blood transfusion from a person I have never met. The soothing ticking over of the machine comforts me somehow. It's measured and it's steady; following protocol. My senses are all at once nauseous and clean, taken over by exhaustion and can I please just shut my eyes for a bit?

Last week Miss J explained the infusaport to me. She hauled me over the other side of the room, taking me past the brown padded chairs, and the dark grey ones with the wooden levers right up to the chair which Doris sat in. 

Doris said I could take a peek at her port. For a $10 fee. 

And after she was hilarious and witty and at probably around seventy years old, she seemed happy enough with it. 

Afterward, I saw Huz had been talking to the wrinkled beauty next to her. White hair and gentle, she had asked Huz if I was worried about having it put in. She told him that she had fought against having the port for a long time, 'but it's the best thing since sliced bread'.

Back at my own chair, I looked across, and she waved.

Thanks Doris and sweet old lady!

Yesterday the port went in, and today in goes the blood from a stranger. I'm feeling a little more awake 3 hours into the transfusion, but it's best not to get squirmy thinking about this blood, this life, this gift from a stranger.

I am more than blessed.

a reason for hope

After the knock at the door, my friend's husband was brave and handed me the meal she had made us. He could have left quickly, with a small tight smile or a sorry expression. He asked me how I was instead, if I was feeling positive? And all at once I didn't know how to answer, didn't know if I was positive or negative or ambivalent or just really scared.

It changes.

This morning it was hope filled with hope. As big as a hot air balloon headed into a sunshiney day with just a still breeze. 

This afternoon the knots started with a simple granny knot and built up and up on themselves until they could have held a ship steady against a warf. 

I answered him, but it was a simple answer. My hope is in Jesus. Not exactly sure what I'm meaning when I say it, and fully aware that this answer could be a let down as perhaps I'm supposed to be pretending I'm not dying. Pretending that my doctor didn't just show me scans with tumors throughout my body, growing and growing and making my eyesight go strange and my legs ache. 

I trust Jesus and choose to hold His hand, but I will not pretend this means I will see my 40th birthday. If I do it's gonna be a huge celebration. It will be at Carrick Hill on those huge lawns with hundreds of my favorite people, and it will be glorious, and I will raise my glass to the extra years, the ones I wasn't supposed to have, and I will think back to the knots and the fear and the year 2014, and it will be epic and I might even have some extra wrinkles, and my boys will be older, and I long for that.

But. if it's less time that I have then I will trust Jesus knows what He is doing with my family and my life. If all my days are written in His book, then i'm really not getting ripped off like it feels sometimes. The days were never mine to have. 

I really have to work on my answer though, because as the days turn into weeks, I want to be ready with an answer for the hope I possess. 

I think it looks harder to live this from the outside than it feels to live it from the inside. 

I have a reason for hope.

a day for Soul and I

Soul and I like a nice relaxed morning around here after sending the big boys off to school. He toddles, asks for puzzles, follows me around, and just lately has thrown into the mix standing silently half hidden in a doorway until I see him. When I look, he just stares back and says; 'hiding' before running off. It's become a serious sport! Reminds me of Pat from 'We Can Be Hero's'...totally cracks me up that show.

True and Brave are getting really good at doing 'bag jobs' before school (getting lunchbox from fridge, packing up readers and sight words, remembering a hat, jumper, umbrella etc), and I love seeing their independence. Just the last two afternoons, it's been the joy of cutting one's own kiwi fruit in half to go 'halvies' with your bro and then scoop out the rest with a spoon. They love it. It's the small things!

After school True has been exhausted despite being the older of the two by 15 months...playing hard, being around roomfuls of kids all day, i totally get how tiring that is. Maybe he's an introvert too? I sure am. 

But I felt lost after they left this morning. The demands left with them, so I just sat out on our huge red comfy chairs on the deck. No more 'requests' for a drink, to scramble for the lost shoe on the way out. Just a quiet little space, and I'm left thinking about what they are up to at school...is it reading time yet? Free play? 

I love that they joined forces yesterday with True's friends, and Brave just joined in. Love brothers that play all day every day together at home and then go back for more in the school yard. 

Makes my heart warm and glad that they are two peas in a pod.