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.