moss the boss at chemo

These beauties have made me smile all week. Your garden is stunning sis!

Today Aunty L swept in with her sunshine and came to Tennyson to be dragged in and around as we toted ourselves from one chemo chair, into the doctors office, back to a different chair, and downstairs for coffee and up again. I had missed her dreadfully. I love to linger in her mad, fun, roses bringing, all out sunshine. 

Loved having her with us today. And why let it all be about chemo...because of course I got to quiz her on all my interior design dilemmas, and laugh at her hilarious stories. Thank goodness for family who don't let a whole day be ruined by treatment.

Soul joined us too - his childcare centre has been dealing with copious children coming down with gastro. Yikes. Last thing we need going through our family. Just thinking about puking children and the domino effect of liquid flying fast and free from a few different angles has me shudder. It's the worst. Made a little worse by trawling through my days of nausea and 'space cadet' post chemo brain, I'm a pretty sloppy night nurse at best, and at my worst I'm impatient and un-empathetic.

Shivers down my spine. I anticipate it like no other sickness. Gastro has a power over me I tell you.

I'm kinda full on about it. Like full on enough that both of us remember a time a friend came to visit after he had been in bed with gastro a mere few hours prior and we were so loving and casual that we didn't let him in the door of our house. Oh my. Yes. We are those people.

So thanks to that, little Soul got to hang out with us and of course spend the couple of hours he was there asking loud, succinct, straight out questions. These were interspersed with his reflections on the medical practices he was witnessing (not only mine but those in all the surrounding chairs) and in between he found the time to introduce himself to every nurse he encountered.

It was actually pretty darn cute.

I have no idea where he gathers his confidence. He puts me to shame as he delves straight in asking what a nurses name is, that he is in return 'Moss the Boss', and then at some point in the afternoon I heard him say, 'Goodbye then Jane'.

He learned her name upon introduction and closed with it too.

Slick.

I was a little edgy that he would comment on someone's appearance as there are obviously a number of really quite sick people being treated, but thankfully we were spared that bullet as his little innocent voice bounced all around. 

You definitely made lots of people smile today Soul. Loved that. I'm so glad you came.

Because I've put a lot of energy into sparing the boys any insight into this horrid game of treatment. Their world, our world, has been intentionally kept separate. The world of cancer treatment has not earned the right to infringe on their childhood, and the past three and now more years have seen me line up hours upon hours of babysitting favours to keep these two worlds from intersecting.

But today there was no easy way around it, and Soul's age allows a little less 'mother bear' protection guarding his heart from some of the confusion and confrontation. And it reminds me of the time I first allowed Brave to come to my appointments and hold my hand while I got my monthly injection, and it just felt so risky to let him into this world. 

Soul with his balloon dog that Dr M whipped up at my palliative care appointment. No one's offered me a balloon animal before...

My goodness, here I am, still trying to keep these parts of my life separate. And if only I could ban them from interacting ever again, but I can't, and I won't, because now is the time to allow it all to mix together at times as this life swirls around faster than I can barely catch it, and if that means Soul gets to make lots of sick people smile at his loud sweet chatter then bring it on. 

You're so damn bossy cancer. But now I'm handling you like a boss.

Take that.

oh the army has stepped in

There is an army of meal makers.

An army of text writers, letter senders, gift givers, question askers, hug offer-ers and laundry-doers.

It's an army I tell you.

The army that continues to give to our family with no thanks required. An army who forgives the lack of neat and tidy 'things are getting better', the lack of 'end' to this foul stench of sickness that has weaselled its way amongst my tribe.

And our people keep giving.

It's an army I tell you.

It's an army of friends that love on us with an extravagance that has me pretty close to tears most of the time.

If you bring it up I'll cry. It's a given.

So if it would entertain you to watch a fragile woman in her (almost) mid thirties lose it almost immediately, then I'm your gal. Give it a go. Just mention how amazing it is to see our community gather around and meet every need we ever thought we had, and on top of that needs we didn't even visualise, and you will have me where you want me. 

It's raining in my eyes. What?!

Our neighbours have stepped into our lives and vowed to lend support in weekly meals, offers of staying at holiday houses, carting my littles to school and back again over train tracks, down steep hills, and in the face of confused boys who don't grasp yet the bigness of the sadness of this cancer - boys who miss their mum coming into school. Neighbours who take me out for mint lattes and melted chocolate, and who walk up the hill to hang out with me and my little Soul. Neighbours who offer us swims in their pool and bring us jam. 

oh my. I really like my neighbours.

An army of church family who bake and lend and cook and write and raise money and welcome and extend grace and remind us that cancer is not bigger than Jesus' love week after week and now month after month. I really don't want to add 'year after year' but it's getting that way.

We are kinda a long-term project at this point.

And there's a huge part of me that longs to be on the 'other' side of the giving. I would feel better about myself on the other side. The side of lending strength instead of needing it so badly. The side of offering help instead of the one in tears receiving it.

My boys, my littles, I want you to remember this love that has been thrown over us daily like a sweet, damp fog to temper all the hard we have seen and walked through. I want you to remember and see that we've not been forgotten to just get by and survive by the skin of our teeth, or in a way that down the track we can all be proud that we 'got through' everything due to our own tenacity or determination.

We have been smothered (in the very best way!) with very big love from every angle imaginable.

This experience is rather humbling.

And in all the ways I've probably needed to be I've been broken. So now the cocky 'conquer it all on my own' has diminished. Because doing cancer on your own is not how you want to roll. 

I'm so glad for the army.

bedtime for boys

Tonight as I tucked littles into beds it was just me as Huz was still on his way home. 

It just seemed like so many hands and hearts to snuggle warm against, so many half-begun conversations, skipped foot rubs and prolonged stroking of foreheads to undertake all on my own. Somehow three little hearts to love on in that quickened space of time loomed too large just for one mama.

But I did know he was on his way home. I knew Huz was coming.

It's just that one day it will be him tucking three little hearts into bed, and it won't be me on my way home, it'll be him, alone with the work, the joy, the tucking in, head stroking and foot rubs all for his own. And it made me deeply sad. Deeply deeply sad.

Maybe I was deeply sad to think that after all these many nights it will no longer be my job to do so. I think it was more the idea of him alone in the task - one we both love and linger over - but this task is joyful in the sharing it together and the talking it over after it is done, in the, 'did you hear Soul say so-and-so' or the 'how funny was it when True....'

In the sharing, we linger over these little loves given to us and somehow we make sense of it together after they are tucked in, tucked up in the mummy and daddy love we blanket around them.

I've always loved the ritual of bedtimes, with the soothing rhythm of dressing all snug and warm, layers of bedding wrapping up small limbs and over rounded tummies, and no need for an excuse to scoop in my arms the golden hair and smooth smooth of youthful skin. I love to trace the outline of noses as we quietly whisper secrets from the day, and I memorise again the minute freckles and long eyelashes that True won't let me mention.

It's a reconnection after mad busy days of school and rushing home and cancer treatments and waking up sick to my stomach that my days are ticking.

But in the routine of bed its the quiet thrum of togetherness I love. And I'm here for this. I'm here. I may not be able to do the school drop off, but thank you Jesus that I am here for this ritual of bedtime.

And when my thoughts tumble onto how it will be when I'm not here for this, it's a sadness in the deep places that stops me in my tracks. It's hard to think straight on it. How is it that the little things are really the big things, and that the boys bedtime is really not so much about bedtime but about the 'us' that is our little family. And I've seen the grace of God meet me in the very moment I have come to need it, I know that I have, and I know He is faithful to meet my boys, my big boy too in that hour. I want to touch this grace ahead of time and know what it will look like. I'm tactile. Let me feel the texture of how you will meet my boys after I have flown away Jesus. I want this so very badly. To know the grace ahead of time.

But I think I know that the grace will be there when Huz needs it, when my littles need it. When I am no longer here for the bedtime. 

Grace will meet them just as it is needed, and not a moment before.

I guess this is the moment before.

And I'm still here.

french provincial. yes please.

When a girl's favourite pastime is pretending she's an interior designer, then perhaps a project or two around the house might just make it on the list despite a hectic (ok fine, I'll call it: traumatic) year...

The natural next step for Huz and my Robinvale (oh how I have wanted to do this for the past 10 years!) has been to knock down the wall between our kitchen and front room, making this one large (well larger), space to use for our dining table. 

I've been hankering after a larger space to put a table because when the five of us are piled around our current six seater table there's really no room for anyone else to join us. So guests have humoured us by sitting up high on bar stools at our kitchen counter or on a piano stool wedged in between the seats.

And I've loved it. When we bought Grandma D's Robinvale 11 years ago there was a bench seat on either side of the blue retro table, and I of course painted it white (of course!) and then we knocked that out, a few years later replacing it with a table I bought off Gumtree for $40 -a red stained, baltic pine piece, which I whipped into shape by painting the legs a creamy white, and sanding back the top.

I loved that table. And even better, Huz mentioned in passing the other day that he loves that table too. Nothing makes me happier than the idea that one of my projects has been lived around and loved around too. That's what I love about taking on projects to paint and find beauty in by scraping off old layers of paint, and finding aged timber beneath to expose.

Lots of life gets lived around a table like that one.

It takes me back to so many conversations over baby names, friends struggling over big decisions, mundane plan making, praying over medical decisions, discussing (loudly) strong opinions, disciplining, correcting, time-out giving, laughing with/at/over our children, quietly working from home in the morning's early hours, endless cups of tea and roses in the middle.

That table is pretty precious.

But it's time for a bigger one. And if I was the kind of girl who liked for stuff to mean something beyond itself then perhaps I would search hard to find the meaning in trading this little loved table for a newer, bigger, larger version of. But I don't even have to search for the meaning in it. As our boys grow, and as we grow together we are ready to expand. Expand the boundaries, expand the friendships, the connections with our community and this can't be done crammed in around a tiny table. It needs to be bigger to accommodate all the good, wonderful life that is to be lived from here on in.

So I'm excited. 

Besides, the new table is gorgeous. She has beautiful legs, and is oak! Yeek!

And I knew just how dangerous I might become (and now Huz knows for sure too) if I have a little creative freedom and a credit card, because he has given me free reign on this room, and we've been joking with each other that it's like this room is my 'Make a Wish Foundation' gift. Because I do really love to decorate.

And I've said it to him aloud, but it's strange how this very very material pursuit is deeply spiritual for me - this home making for my tribe - a room to meet them, provide for them, a place for them to sink into when the day is done, when they are ready to crowd together again after school and childcare and work and a space to be family together. 

It's a space that reflects me one hundred percent. Some french provincial lovin' from this mama.

And it makes me kind of thirsty, although that's the wrong word for it...but maybe you'll remember the parched feeling in the back of your throat when all you want and can think about is water. It feels like this: the desire to be a part of all that living and being and crowding around this new bigger table together with my loves. I thirst for being in that place with you littles. But if I can't actually be there next to you, at least I can make the space possible, make the space a place you can offload and relax and be with your daddy.

There's just one little thing...

...mummy really wants to put in a chandelier or two. So take the heart from my words here and see how much I want this room to feel like a huge hug from me my boys. And yeah, it might be unconventional for a tribe of boys to live under the sparkle of a chandelier or two, but then again we're really not that much of a conventional family. You just might have to put up with some sparkle and glam from up above. Sorry bout that, but a girls gotta do what a girls gotta do, and I say a big 'yes'! to the chandelier.

my red rose flowering for the first time! I planted this one solely so I could have it as a 'cut flower' inside without any guilt.
this one's for you Huz.

lounge room ministries

I love my friends. more and more I just love them.

And today it's just seemed true as I turn over these beautiful ones in my heart just how blessed I am to know true friendship. Because when I have been at my sickest, my lest able to give back in friendship; that has been when I have known how deeply I am loved.

Truly it blows me away to think how the dearest of my friends have drawn nearer to me in my sickness rather than cowering away, turning from my side as they could have, in fact as I may have done if the roles were reversed. Because, who knows what to say to one suffering, to one so utterly undone as I am.

My strength has been stripped away, and all the perceived control, the understood choices I surely have ahead of me...it's all been blown off like those crackly brown leaves under the oaks at the Botanical Gardens. Just drifted away, leaving me with a pretty wrecked body, a scarred self, and a broken heart.

Tears are often quite imminent. 

Probably lots of things are clearer now I'm sick, now I'm not going to get better just probably worse. Does that make it easier to speak words that used to stick in my mouth, make it easier to live with my heart 'on my sleeve' because now what do I have to lose?

I'm such an introvert. Love being a little crab tucked up in my own shell, just ducking out into the light for short intervals before I need to head back into my own space to recharge again.

And it's true that for the last few years I've put that tendency aside a little, or maybe at least learned to live with it better, so that when I do pop my little self out of my shell I don't just seek out the light hearted fun, but also the moments to deeply connect. And for that I'm so glad.

I made a new friend this week. A beautiful, beautiful beauty of a soul wrapped in the sweetest girl. 

And it was one of my most dear friends who let us meet, because she is giving and sharing like that, and maybe she knew how chatting with Miss A (for an entire morning complete with your scummy soul satisfying toasted banana bread Miss K) would water my soul with that life giving connection that only sisters in Jesus can.

And its friends like Miss K and Miss A who ask the hard hard questions, the questions that can only spring from listening to my heart tucked up in the words I spoke out tentatively, the hard questions of how a heart can bounce from loss to loss and still trust in Jesus. The echo of the hope each have found too, and what it looks like from the point of view of different kinds of hard. 

And I Ieft so rich from that morning. Not just a belly of banana bread, but a soul connected in the deepest of ways.

And all in my sweet friends lounge room. Just a room with a few girls chatting. And it still blows me away that what looks simple, like something that is not much, is actually just.so. much.more.

Friends to echo back to me the hard living that's going on is just such a gift. Because who wants to do life alone, and I don't mean the totally isolated alone, but the alone that can come about because it's scary to open up yourself to others, to share transparently, and to truest others to speak into your fears. It's so good to not be alone.

I am more than blessed.

first day of school.2015.like a boss.

Sending my boys off for the first day of school for 2015 was both hard and welcome and cheer-worthy and heart wrenching and well, mostly just timely. We had partied hard, stayed up late, pushed ourselves to have fun fun fun, and now it was time enough to head back into it all.

And Soul, although attending nowhere new in the least (as he was attending his childcare centre three days a week during the whole school holiday break) was more excited than anyone (whilst heartily eating his customary apple) to hold up a good old blackboard and bestow on us elaborate smiles as though the Oscar was his.

Here here Soul!

True was excited mostly about his haircut which was styled pretty much exactly like mine.

Brave gave out his 'eyes-like-slits-but-genuinely-happy-smile' and in his classic middle child way cruised through the morning like a champ.

On the whole I did a pretty awesome job of waking up and getting make-up on before 8am (a moderately impressive miracle) so as to get some back to school photos happening, most of which was motivated by dark 'this may be the last time I send them off for their first day of school' thoughts. However, in spite of what motivated such early morning organisation I look back on these pics with gratitude. They capture the excitement in the air, and the fresh start.

Look at those fresh faces. Those uniforms. Those excited little hearts to meet new teachers and classmates again.

True has felt the weight of the change, and my extra cuddles and questions have probably just exacerbated the heart issue. But, just like my mum, and most probably her mum before her I continue to ask 'how has your day been'? and 'what did you get up to today'? no matter how little info it tends to extract. Because in some ways, at least when he's 34 with a tribe of his own perhaps he will remember my overeagerness to hear any snippet, any little nonsense as it relates to him because this love is like a banner over him and I want to hear it. Any of it. Absolutely any of it.

(and for the record, yesterday the most I  got in return for above questions was the accusation that I gave him a ham and cheese sandwich on purpose 'even though I know he hates them and really just wants fritz and sauce). Aggggh.

Right. onto it.

And I'll ask my qu's again tomoz...after all, I never know if tomorrow will be the day he finally gives in!

We are excited for Brave this year to be having an incredible teacher who is already wanting to know how she can support him in such a challenging year for our family. 

Mrs A has gone out of her way to make a connection with him and keep an eye out from day one, and after we got a chance to meet last week I truly am lost for words. It is such a gift to know that my middle guy has an educator championing him not only academically but also emotionally. It's such a gift to me to know that he won't be left to 'get away' with behaviour, but at the same time there will be grace extended to him as he will be grappling with so very much at home this year.

We love our local public school! I am blown away by their support of us. This school community is so generous in the way it has reached out and practically given us meals, time, offered connection, transport, cups of tea, and extra loving on our boys. Makes me emotional actually...the extent of love lavished on us has been pretty big!

We've yet to meet with True's teacher, but are really looking forward to getting to know Miss K. It's going to be a huge year for these boys of mine. These boys I so want to protect, and yet this year will see them grow up in many many good ways, I fear much more will be asked of them than should be at such tender ages. It's the topic of many of my late night prayers. 'God please meet my boys in the middle of all this yuck'!. And it seems perhaps that he has been setting that up. 

We will see.

professional cancer patient.

Today I had chemo, round #1 of this cycle 'who-the-heck-knows-what-number-we-are-up-to-now'. My goodness, this whole experience with chemo is so very never ending and perpetual. It's best not to count I think.

Huz and I spent the morning madly painting our new room (hurray) and then whisked ourselves down to Tennyson for some good old fashioned appointment attending, blood testing, chemo IV taking, flushing, coffee drinking, and chatting with the nurses action.

Good times.

And it's all very very routine. How lucky am I to have Huz chauffeur me/be my chemo slave getting me anything and everything I can't reach or get for myself while I'm all hooked up. 
Having him work part time so he can be with me has been incredible. Maybe I will never quite have the words to lend so I can articulate the stability and predictability that helps me wade through all the other changes in this gig.

I'm wanting to award myself with 'professional cancer patient award 101'. I think this might include never missing or being late to an appointment, mostly being polite to my doctor even when he gives me horrible news, and not screaming (even when I really really want to) over whatever injection is thrust into me at a moment's notice. oh, and I gave away my coffee today to one of the staff that loves me. made her so happy. loved that.

It's a true shame that all these good deeds of mine can't secure me a place in the land of 'cure' or even 'NED'. I'd take either. The sad fact is that you can be the most diligent, obliging cancer patient possible and this disease will show no mercy.

You are so bossy cancer. I really do hate you.

Today's highlights included an unexpected bone drug injection, the completion of some life insurance paperwork by my doctors(simultaneously depressing and invigorating since it was on my list of to-do's) and unsolicited advice from various nurses with various opinions as to if Huz and I should bite the bullet and get a dog!

Think we decided a no to the dog.

For me, I want to get one for Brave. He has asked only for a dog for the last three birthdays. Can you imagine the excitement if for his six birthday coming up he got a puppy? 

Oh.my.goodness.

Just thinking about him loving on a dog of his own gives me goosebumps. He adores animals. Absolutely adores them. I desperately want to be part of giving that gift to him, but oh my goodness, we so can't handle another 'dependant'. All the midnight cries for Huz to attend to, all the peeing on the floor, (the dog I mean) grass dug up, hair all over the house etc. But then I think of Brave's face. Aww...what to do?!

hair. cut.

I finally caved and cut it.

My hair that is.

It had got to the point I was feeling like a fluffy thumb. The thumb part is how I think of myself bald, the fluff is the crazy short hair growing straight out from my head with no plan.

kinda like this photo my sissy's and I found of Miss A and I together...crazy fringe with no plan in this one!

I love my hairdresser. they fit me in last minute, and my sweet girl totally got what I wanted to do. Add a little sass by adding a bit of style, dodging the hairy thumb look and adding a smidge of colour.

I'm happy.

so instead of pretending I'll have hair for lots longer when I think it may only be a few weeks or months more when I go on my next type of chemo, I'm so glad to be having fun with it and going a little rockstar. just quietly.

True has been begging to get a letter shaved into the back of his head. For the first time ever I felt the 'peer' pressure to do the same. Can a 7 year old influence a 34 year old negatively? Am I just wanting his approval?!

All the cool kids are doing it...

Didn't get the letter shaved in.

Maybe next time tho Brave. Maybe next time.