the inside

I got to meet with some of our 'forever family' yesterday. For the first time in months and months. It was like taking a big gasp of air after being underwater for far too long.

Our church is kind of small and humble. It's got some broken, real people. Like me. And it was so good to be there in person and get to sing alongside others worshipping Jesus, and next to my boys who cuddled close to my legs during the worship time. To sit together as a family was sweet and so comforting. My beautiful friend Em came and joined us halfway through, and to feel encased in love after being tucked away in my own sick world for so long was especially lovely.

And just being there together was enough to refresh my soul. It was good. And I felt ridiculous for all the times over the years that I have resented going to church because of various things ranging from tiredness to not wanting to front up to having to be authentic with people after a particularly difficult week. It just felt a little silly. My perspective has changed since not being able to go for most of this year. I guess absence does make the heart grow fonder.

But today it's been the little moments that have made me catch my breath, and at the times I'm least prepared for it. Just in the middle of normal I'll feel my stomach give way, and I go from being all normal to being all 'cancer-y'.

I dropped off Soul to my mum and dad's for the day, and just in the middle of talking about photos and how to get them off my computer I just felt myself spinning out. And it was the bolt of lightning to my heart saying that all of it is for nothing because all my effort is in vain to capture memories. Huz won't do all of that after I'm gone, my boys won't have albums all neatly lined up of year after year of memories. It is all for naught.

And my heart writhed in me while I pretended to be normal and discuss photo storage options, but my soul was faint with the realisation.

Another thing I can't control.

Another area of my life and priorities that will crumble as soon as I am gone.

Somehow I can't get used to how shocking this all is. This letting go. This gradual, hair pulling, nail biting, deep hallow sickness that weasels its way inside my insides. 

It's the inside of my insides that hurts.

And there's no denying the power of the grave in those moments, because all seems lost. All is lost. When I cease to go on so will every single priority I have ever set, every dream I have ever dreamt, every song I have sung, every word I have spoken. All gone. Done and dusted.

But all is not over. The Jesus in me will raise me from the dead just as He was raised, and I will go on to be with Him in the sweetest place I can dream. This heaven is more real than this earth. And there I will be.

And I bet I won't be thinking about my lost photo albums then.

Today I'm asking myself if Jesus is enough. If He's really enough for me. Enough in the face of lost dreams and futures and photo albums and moments I imagined were mine for the taking but have been snatched away. 

Is He really enough? And He's come to me before and reminded me that He is, but I'm needing the reminder again. A fresh one, because the inside of my insides needs to hear it. I need to know He's enough for me, enough for this life and the next, and enough for my boys. 

More than enough.

sweet and sour

It's been an afternoon of sorts. Well, out-of sorts. Huz for whatever reason has bitten back at a few of my remarks that he has taken badly. I guess I don't blame him.

Part of the deal with 'getting better', or 'coping really well' comes the confusion for everyone about how to treat me. What is the new normal, and all that. I mean, one minute I'm flat out on the couch or bed and sleeping most of the day, and all of a sudden I'm getting amazing medical scan results and bouncing around like a new little puppy who has been locked up too long. I actually really do feel like a puppy -just wanting to go go go until I literally collapse to make up for all the lost months.

But that does make it pretty confusing for handsome spouse and wonderful family who are trying to interpret/continue to support sick/bouncing puppy moi. 

I'm a little confused myself.

The 'rules' seem to shift beneath us each time I take a step of health. This weekend we spent the morning clearing out the back garden of branches and foliage to prepare for bushfire season, and I did my first bit of cooking with the boys and my beloved Thermomix with a yummy chocolate cake for morning tea. Then in the afternoon we headed off to Crossroad Bowls to take the boys bowling! This morning I went to church for the first time in about 9 months, and this afternoon couldn't help but try to trim back a large bush that  was getting out of control. 

Then this afternoon I kind of crashed out.

After all the sweetness of an unusually busy weekend full of life and packed with heaps of family time, I just kinda hit the wall.

It was at this point that Huz hit his own wall.

His wall was made of my requests (read: jobs I've asked him to do) all piling up, stacked up against a whole pile of Sunday night tasks like making lunches for the week and putting a baby seat in the car.

He was not happy. And so while I inwardly crumbled he kinda did too. And it was in front of our crowd of littles, with True commenting that 'adults fight too sometimes' and so our tribe watched Huz and I fight fair over the extra load, the working around all the little changes, all the declines, all the 'can'ts'...and the can'ts that have become can's. It's super confusing.

I don't really know how to navigate this, and all the while as I'm getting these fabulous results, and feeling my energy levels elevate I'm inwardly struggling to keep it together. 

Waking and feeling somehow alone, moments in time with boys giggling loudly beside me and mayhem of bikes on the deck and Soul wanting to get in and out of various dress ups, and I've fazed out to that darker place where I'm confused about how to just be right now, what to feel and how to be in the moment, because I'm feeling good now so there's pressure to be fully 'here' fully present and lap it up. And I do. Mostly. 

But there are the moments now I'm doing so much better that really I'm doing so much worse, and my heart is taking a beating, and I'm fatigued from how wonderful it is for everyone else that I'm 'doing so well right now', because playing along is kind of mandatory, even though I am at a loss as to how to walk it out because I've never been dying before while trying to live so hard. 

I'm tired, and rest for my soul is hard to find today.

So when Huz is baffled over how I can go bowling yesterday and be too exhausted to make school lunches today I don't know what to say.

It's just the sweet and sour of 'doing so much better' I guess. But it's unfair that I get to choose the sunshine and not the nitty gritty tasks, and I've promised myself I'll save him from that.

Just not today.

oops.

My True lost his first 'for real' tooth on the weekend.

When he was four, Brave and he were playing on the couch and jumped down at the very same moment, ending up with Brave's head having True's tooth lodged in it. Now while this event did entail a visit from the Tooth fairy, this time was the real deal.

It wobbled and wobbled for a few weeks or more before an apple took it out. Huz searched around and True looked everywhere, but it seems it was swallowed somehow.

So a note was written and placed in the little bag to hang on the door instead of a tooth. Just so a certain fairy wouldn't get confused.

Luckily all worked out, and the Tooth fairy came through. She's good like that.

Cha Ching! $4 right there.

Score.

I just love this kid's grin. There's something awesome about how it changes with each tooth's coming and going.

(These smiles were achieved by the promise of a 'chubby chup' afterwards. Unfortunately I was rewarded with strained expressions from the older two and a strangled youngest. Sorry Soul. Was worth a go.)

3rd birthday letter for Soul

Dear Soul

Beautiful time keeper of my joy these past three years. How can you be three my sweet, soft cheeked boy? 

Happy Birthday darling!

Today it's like I'm seeing you with new eyes. The baby of my three boys is now so much not a baby. You assert your three years with long sentences, 'grown up' phrases and understanding so much more than surely you should at only three!? Today we have opened presents (lego of course) and gone to the shops hand-in-hand with you choosing a chocolate cake for this afternoons celebrations. Daddy and I have had you all to ourselves for most of the day, and you have been utterly delightful. Cheeky, chatty and so very aware that this day is your birthday, your day to be the centre of attention; the star attraction. And why not? So it should be!

We stopped in at the florist on the way home - you started a detailed conversation with the florist over your brand new hat and how it was your birthday - turning three of course- and you even threw in a mention of 'fake christmas' the celebration we held last weekend as Ali and her family won't be in Australia for the 25th…there was nothing you weren't happy to talk over with this lovely stranger. Oh my goodness, how grown up you are becoming, and how confident too.

You know your own mind Soul. You are stubborn and won't let go of an idea if you can help it. You understand the justice of 'time outs', and have experienced probably more than your fair share of them! When something is fair though, you are on board.

I am undone by your eyes. Those big eyes looking at me and telling me 'I love you mummy'. This is the best. 

We have a new little nighttime routine at home since you have recently moved into the daybed from the cot. You are the first of my three who likes me singing you to sleep, and oh my goodness I am revelling in the joy of it. To sing over you is such a treat! You love nursery rhymes equally as well as 'Jesus love me' and 'Jesus loves the little children'. We have started to finish our singing with the 'One.Two.' that the older boys learned at BSF some years ago. You are so darling as you lay there in the huge bed, utterly dwarfed by its length.

It reminds me that although you are still small Soul, you will be big soon enough. These days of quiet routines at home are beyond precious to me. I am so blessed to be your mama.

Love you baby,

Mummy xx

off balance

Feeling a little knocked off balance these last few days as both Ali left to go back to Turkey, and then my Soul had his birthday. Oh the emotion that flooded me! My goodness.

It was time for Ali to go.

She came when I was first in hospital over two months ago, when a pain crisis hit me, and my Huz sat by my bed for a week or so as the doctors had whispered conversations with him about how serious this was. 

End of life.

In my dazed, drugged up state I didn't know what he was shouldering, the kinds of conversations the palliative care team was having with him. He tells me of vague late night conversations we had together about this being the end, and how to talk to the boys about what was going on.

Huz gathered my three boys on the bed and told them that Mummy might die.

The awful conversation that no one ever wants to even think about having with a 6, 5 and 2 year old. My Huz gently came to them and navigated that without me. Me in a hospital bed, sleeping and hazy, not understanding the severity of what was happening.

And then the funny side of my hallucinations all drugged up where I sat bolt upright in bed and demanded he use the 'Glen 20'. And another time when I pointed to him and told him that he 'was not in my basket of happiness'. What! 

And so Huz called Ali, and Ali came. The most amazing, selfless gift. My sister flew from the other side of the world with her husband and my three beautiful nieces by her side. All to see me. All to not 'miss me' just in case this was when I would fly away to heaven.

There was one more hospital trip after that. When my red blood count dipped to 40, and from Tennyson they rushed me to the RAH only to be given a battery of tests, blood (of course) and then declared free to leave. All very dramatic. All pretty pointless.

But that first hospital stay was a turning point. I came home to a palliative care team willing to administer heavy drugs at the drop of a hat, and a most unwelcome addition to my bathroom: the shower chair, because standing up for any length of time was pretty impossible.

So Ali came and lifted my heart as she stepped in to help care for us. To join the amazing family who have been caring for my boys and my house and for me all year.

Slowly over the weeks I got stronger. With the change to a new chemo of Xeloda my body had a chance to rest from the relentlessness of the previous one. I'm a bit in love with this new chemo to be honest. 

But now she has flown home. I'm glad it's her flying home to Turkey instead of me being the one to fly home to heaven those few months ago. This time now is a gift. Absolutely.

And the birthday of my baby, my Soul, my sweet chubby cheeked, chatty littlest guy is a reminder of God's goodness and presence in these last three years. 

The best kind of reminder. 

Because then it smacks me in the face that it's three years ago the words 'breast cancer' were spoken over me, and I refused to understand at first. And so the beautiful of Soul and the ugly of this disease are a little bit interwoven over the years, and I am thankful and tired of them being so closely linked, but it's the kind heart of God that I see mostly in how He hasn't written off these years of sickness with nothing but the cancer to see and feel and know and embrace. No. He has given us new life in the midst of it, and this bigger, more awesome story being written despite sickness being ever present, despite me having to contend with drugs and aches and appointments. 

I have Soul.

I have this little guy to love on and laugh over and see good in his beautiful life. I have hope for the awesome story God is writing even now over him. And it puts cancer in it's place, because in the light of the main story line, cancer doesn't even get it's own title if you ask me.

So Soul's birthday is rock bottom emotional and full of deep deep meaning and mystery, and I spent most of it just being with him, playing lego, watching him water paint and sing. And when I put him to sleep I sang all my songs of love over him and prayed again that he would taste and see that the Lord is good.

I love that kid.

I miss my sister.

I'm thanking God for lending me grace in the moments I can't imagine living through just when I need it. His grace in the hard is ever present.

So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. 
2 Corinthias 4.18