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Thursday, March 29, 2012

Germs, glorious germs

No doubt I owe you all an apology for my inability to blog lately - we have all taken turns in being sick, when we haven't all been sick at the same time, and our energies have been focused on the simple things - getting food in, keeping it down, breathing through our clogged up mucky noses and trying to fit some sleep in whenever we can.

Oscar's bloods have remained consistently high but that is no surprise given said illnesses. This week he also had a flu injection and even Dr Margaret was away sick. Sydney is full of germs it seems lately and we are definately not alone in our germ frenzy and we are lucky to be in a position where germs are simply something we experience like everyone else as apposed to them being a threat to Oscar's life. So, in some strange way it feels good just to be exhausted and sick from something that we know will run its course (despite all the endless whinging). One thing is for sure if you can whinge about it it really can't be that bad! (Although this does not take away from the fact that the whinging is getting to be very annoying). The lack of sleep is a walk in the park compared to the daylight hours with toddlers who are discontent with everything and generally iritable. And even more annoying, they are still adorable and treasured even when they are out of sorts and driving you crazy!

Nothing much else to report. The hospital car park is being renovated which is a total drag and adds another dimension to our visits that we could live without but we are glad we only go fortnightly. We have been surrounded by such wonderful friends with gifts of incredible generosity and thoughtfulness and Auden has been unconditionally embraced by his Pre School friends and all the mums who help us out. He went home with his best friend and had a wonderful play date whilst Oscar and I were at hospital doing what we do.

We did have a call suggesting that Oscar go ahead for his circumcision last week but he was too sick to go under anaesthetic so he is back on the wait list for now. Waiting is something we are very good at, so definately no rush there.

In amongst all this blur my thyroid was very low and I am waiting for the medication to kick in so that I don't have to do that thing in my head all day where I tell myself to push through the tiredness and fog and keep pushing. Soon I have no doubt a blissful calm will descend upon me and I will become the confident, powerful mummy who knows what's going on around her (although I am not sure my thyroid medication is quite that good)....but you get the gist.

All is well. Thanks for checking in on us and a special thank you to everyone for your compassion and friendship these last few weeks. In amongst all this chaos I have been very spoilt and feel overwhelmed with your generosity. x

Thursday, March 1, 2012

Clinic Visit Wednesday 29th Feb 2012

Oscar's bloods have been high for a month now so we are increasing his methotrexate dose going forward. Nothing to be concerned about, just a 'normal' part of the journey. All is well.

Going to clinic has changed since Oscar has been going to Pre School as he is so tired he doesn't want to go and puts up some resistance. Plus, we have to drop Auden at Pre School before heading to hospital and often get stuck in horrendous traffic on Pennant Hills Rd. The combination can be intense and usually I distract Oscar and myself by affirming all the positives of our visit: "Margaret will be there". "We will get you a smiley face biscuit." etc for Oscar and for me, "It will be quick and easy today etc." This week my brain was too confused and overwhelmed to get these simple sentences out of my mouth. It was like I had drifted outside my own body and I could see this other me (outer body Cindy) floating above me saying, "I can't be bothered. I don't want to do it. etc". Meanwhile the physical Cindy was telling the outer body Cindy, "Oh shut up, stop complaining, grow up, this is a walk in the park compared to so many other things you could have to be doing today. Get on with it." Still, neither Cindy could get past these thoughts that seem to have taken on their own life and with Oscar screaming, "I want to go home. I don't want the lady to hurt me", I had to surrender to my own inability to get it together this one time and turn some nice music on and just ride it out.

Of course, once we got to hospital and found the ever illusive parking spot in the rain and got ourselves going we switched into our hospital personalities and found some sort of ease in the routines we are so used to. Oscar ran around the poles, weaving in and out to the front door, we greeted Donna with enthusiasm, signed the necessary paperwork, found the food trolley with the biscuits Oscar likes, said hello to Margaret (who has been away for our last two visits and who is such a comfort and joy), and so forth. Oscar changed his entire way of approaching his blood test, wanting to sit on the chair by himself and arranging things the way he wanted them. Soon, it was all done and time to go home. Margaret always looks after us and it was nice to have a shorter visit this week. When Margaret is there we find something incredibly safe and easy about clinic visits that is a real treasure to us and very deeply personal to Oscar's journey.

Not surprisingly, given my mental state, when we got back to the car park I couldn't remember where I had parked the car. So I headed up the ramp with Oscar and thought I saw a car like mine and headed towards it but Oscar said, "Where are you going mummy?" To which I replied, "To find our car". "But mummy its up there, we have to go up there." "Where?" I ask and Oscar says, "I show you".

He led the way straight to our car two more floors up the car park and then said, "4 ramps mummy, here it is. Silly mummy." Bless him. I had to laugh and said, "Maybe you should be driving too Oscar seeing you are doing better than mummy today." Oscar then said, "Oh, no, mummy I'm just a little boy not a big boy".

He sure know how to lighten one's mood. Having said that I spent the trip home in a different mental battle, thinking about one of the mums I ran into who we spent a lot of time with on the ward. It struck me how odd it is that I know so much about her life, how she had to sell her house, move to be near the hospital, leave her infant daughter with her mum and live in hospital for twelve months with her son and all the other little details that made up a microscopic part of her journey. And yet, here I run into her to find out her son has relapsed and she is gearing up for another long stint of treatment and all the associated upheaval for her whole family. How much we know about each others journey and yet how little we can protect one another from the personal details that are uniquely our own. My heart goes out to her and it is another reminder of how precious life is and how we have to grab every moment.

There's nothing like a trip to Oncology Clinic to rearrange your head space, give you perspective and a good kick up the pants for any weakness in thinking that is a luxury of those whose lives are running relatively easily. When in the thick of trauma it is so easy to have the self discipline to only give energy to the things that are real and matter and when life starts to even out a bit we can slip into unhelpful resistance.

If we learn anything from trauma it is this ability to focus on what matters most - acceptance of our own humanity and love, love, love. Beyond that the brain needs to just get on with it. Life is short.

Take care beautiful people. Be kind to yourselves and one another. x