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Sunday, December 30, 2012

All you need is love...

"That's the spiritual meaning in every situation: not what happens to us, but what we do with what happens to us and who we decide to become because of what happens to us. The only real failure is the failure to grow from what we go through."

 Marianne Williamson, 'The Gift of Change' (p.5 Kindle Edition).

This Christmas has been magical for me and my little family. Discovering really for the first time what it is like to have the joy and fun of Christmas without any hospital commitments or distractions. How lucky and grateful we are for the spirit of Santa and wishes come true.

I don't want therefore to talk about anything at this moment in time about health. Period. I am having a little holiday from that responsibility by pretending that it does not exist. Because if you are lucky enough to be at home with your loved ones at this time of year - nothing else really does exist outside that little cocoon. We may all rush around, spend too much money, have too many commitments and go slightly crazy at this time of year but it is all a wonderful luxury that leads to the real privilege of spending time huddled up together as a family. Visiting loved ones, sharing presents, eating food, drinking wine and being together.

For those of you still in hospital though I send my love and light and wish you well. You are on my mind. You are in my heart. And as we head into the New Year may it be one full of healing and love and the creation of new memories of fun times.

I began this entry with a quote that I just read the minute before I started writing. There are things about being in hospital that suck (obviously) but there are some real moments of intimate privilege that heighten your life experience in ways that definitely enrich you. There is the complete absence of 'normal duties' - so you don't have to do the dishes or vacuum the carpet! - and there is this vast opportunity in the space that an isolation room in the middle of the night can provide for you to really strip away all that other nonsense.

In a dark room, in a ward full of sick children, in a strange place that is becoming oddly familiar you can feel like you have dropped of the planet into some strange vortex. It is in this space where you have nothing to distract you except the beating of your own and your child's heart.

In that space you know with all your heart that the only thing left is love. You know that you have a choice in how you respond to your circumstances as surely as you are painfully aware that you do not have a choice in what those circumstances are. You know that you have to remove absolutely everything from your life that does not come from love. You have to strip everything away and go back to the intuitive consciousness that you had as a baby, before linguistics and socialisation. You are in an embryonic state, free floating in a womb of the unknown. Being.

Perhaps it is no coincidence that you are returned to the embryonic state at a time when you are fighting for the health of your child's cells, their very DNA, as if you must re-grow them and give birth to them all over again.

I remember a night in the dark in an isolation room with a little boy named Oscar. It was a scary night and I did not know whether that little boy was going to make it. We had dropped off into the void together. And I held that little boy in my arms all night. I sat, my back in agony, and I held him in my arms and I decided that if love heals then I will love him more than any love ever known to the human experience. I sat up and focused every single cell of my being, my every breath and my every thought being pure love. I imagined that the love was radiating out from my chest into his and I sent loving thoughts like a mantra looping over and over in my consciousness into his.

The next morning a Doctor ran into my room elated, handing me the results from Oscar's bone marrow aspiration. They were as good as they could possibly be and they were the big ones we had been waiting on.

I did grow that night. I knew from my heart and not my head what the secret to this miracle of life really is. As someone who spent too many of her adult years studying law and looking for the facts with my mind, I discovered the truth with my heart.

To all families out there trying to love each other through each and every night remember that circumstances do not define us, they do teach us and that it is a journey that never ends. Growing takes time, it takes the nurturing care of people accepting you for who you are in any given moment (good or bad) and it takes unconditional love of yourself and others.

Some moments we fail, we fall back on the habit of fear, other moments we evolve and remember who we are by letting go of the idea of life and just living it from the heart.

I have failed many, many times on Oscar's journey to health - as his carer, his mother and his role model. I have given into fear many times and I am not proud of those moments and I have shared some of them with you on this blog. I am grateful for your patience in reading what was not always uplifting to read and in your unconditionally returning to this blog to support me.

I have also risen to all sorts of unimaginably challenging situations with genuine selflessness and love, as all mothers do. I have had to push myselft past the limits of my mind and dive deep into the freedom of my heart and I hope I have shared some of this tremendous light with you amongst the darkness.

We all have limits. We can all grow past them. We are all one big family trying to find love in the dark night. You are not alone and when you feel alone (as I do many, many times) it is not necessarily because others have abandoned you but because you have abandoned yourself. You have failed to be kind to yourself by trying too hard or forgetting to forgive or by just simply expecting too much.

Love is the answer. No matter what the question.

Take care beautiful people. Thanks for checking in on us throughout 2012 and may 2013 be full of health and happiness for you and all your families. x

Thursday, December 6, 2012

Oscar's Medical Update

Yesterday Oscar had his first appointment with the Paediatrician for his asthma. He was the most lovely, lovely man but he sent us immediately down the road for a chest xray because he wanted to make sure that there were no nodules on his lungs or that there was no evidence of cancer. He said, given Oscar's history, we should check that first. So me and the boys went for an adventurous walk down the Pacific Hwy to the Nuclear Medicine place. The boys thought it was wonderful because we had to go across the train line and they could watch trains (although they would have preferred to stay there for the rest of the day). There is no activity that cannot be transformed into magical fun when your 4 and 5 that's for sure.

The xray had to be done a few times as Oscar wasn't too keen on it at first but then he decided it was all ok and they got the picture they needed. You can't rush Oscar at these things. He has his own method of coping and the best thing you can do is respect that and wait for him to be ready. They are awsome at understanding this in the Children's Hospital but this poor technician seemed somewhat out of her depth with him. Had to laugh and roll with it.

Auden was a superstar and stayed out at reception with the absolutely wonderful receptionist. He made a card for Oscar and drew and took over the reception desk happily. Then we headed back to the Paediatrician to wait for him to read the xray. So it was a much longer afternoon than expected but we had a lot of fun along the way.

The Paediatrician said he thought there was a bit of a shadow on the lungs but that it was probably nothing to worry about and normal but that the Radiologist was going to look at it for him and he would call me if it was a problem.

Aside from that little deviation we now have an asthma plan. Two puffers and a nasal spray which should mean he starts to improve in the next month. If he has to go to hospital at any stage or has a critical episode we do have an issue about giving him any prednisolone (Redipred) because he had large doses of this during his cancer treatment and it does make the cells multiply (there is probably a much more medical way of explaining this) so we wouldn't want to give it to him without consulting our Oncologist and will probably need to find an alternative.

He's not so keen on the nasal spray and has so far had an absolute meltdown each time we use it. This morning was a spectacular display of rage with him screaming at me "leave me alone, don't touch me" and throwing things wildly. He is sick of all medical intervention and really does just want to be left alone. Plus, he is just not feeling 100%. Auden gets upset by this too, of course, and tries to cheer him up as best he can. Oscar is also on a food strike. Has been for a while now, since his symptoms got worse and he is just a bit fed up with everything. He will drink milk to the cows come home (ha ha) but that is just about it. I am trying to get an appointment with the hospital dietician to see if they have some strategy I haven't tried (we must be up to strategy 127 by now) and Redkite have given me some great books to read to him to help him cope with his emotions.

As for his Urologist, things appear to be ok in that he doesn't have a urine infection but we need to go and have a DMSA to check his kidneys are functioning and an ultrasound. So all is well, or as Oscar likes to tell everyone "My penis is better now."

That is the full medical update. If I don't hear from the Paediatrician today I can assume his chest xray is normal. I'm sure he was just being extra vigilant given Oscar's history and that all will be ok but I must say for a short moment there when we rocked up to Nuclear Medicine unexpectedly I got a bit of a fright before I reminded myself that this is a journey where you go with the flow and don't worry unless someone with a medical qualification tells you very specifically that you need to.

So we keep flowing. Tonight is Preschool Xmas Concert - can't wait. Auden has been practicing his singing day and night and is about ready to burst with excitement. Oscar has missed the rehersals but I am practicing with him and hoping he rises to the occasion and gets up there and has some fun too.

Thanks for checking in on us and love to you and all your families. x

Monday, December 3, 2012

Good news

Just a quick message to say that Oscar's urine test came back negative so we don't have to worry about that for now. This is good news indeed! He seems much improved since he started the antibiotics so hopefully we are back on the trend towards wellness and having fun (not to mention some sleep).

Birthday Boys

Its been a magical time in this house as the boys both celebrated their birthdays.

Oscar spent the actual day of his birthday very sick vomiting but we savoured the joy of cuddling up on the lounge and just being. There's nothing in this world that can stop us enjoying a day that has magical qualities for me - the air seems fresher, the light sparkles...everything just seems more vivid and treasured and blessed when we focus on Oscar's special day.

The birthday party was full of pirates, treasure, adventure and...well, total chaos. Auden had ten of his friends from preschool and Oscar just wanted his two special friends - Toby and Timmy.

Auden got his first bike with pedals for his birthday. He wanted an orange and black one and we were lucky to find exactly that at our local Target store. He is in raptures over it. The other big event for Auden was that we had agreed many months ago that when he turned 5 years old he would give up his dummy. He wanted to tie it to a balloon and let it fly up into the sky. Of course, in all the party prep, sickness, work crazyness that is life with kids at birthday time I forgot all about this and didn't have a balloon prepared so I suggested he could have his dummy for one more night but Auden was very definate that he was never going to sleep with his dummy again so he just gave it to me and went off to bed.

The day of Auden's birthday was also the first day that Oscar had been back at Preschool - so they both got to celebrate their birthdays at Preschool on the same day, which they thought was pretty great.

Oscar has been consistently unwell and has missed a lot of Preschool this term which has made working and everything else a bit of a struggle but we are getting through it with our sense of humour in tact. Next year it is our great wish to see Oscar just 'being' 4 - running, playing with friends and all that other fun stuff that we get glimpses of in between his rounds of sickness. Today we await the results of his urine test and we are sending the positive vibe out there that it comes back negative and that there is no need for any more intervention of the medical kind in that regard. Thursday we see the Asthma specialist, next Tuesday we have his kidney function test and next Wednesday is check up day. He troops along as best he can but I have to admit it is hard work for him at the moment. So, happy birthday Oscar Frederick and I promise you again - life gets better than this - it really does!

The actual birthday party was particularly chaotic as I had been up all night with Oscar and my brain could not think clearly. After the party finished and everyone went home I realised I had forgotten a couple of the games I had prepared. I was telling Pete how annoyed I was with myself and Pete had replied that you can't expect to be a super mum. Auden, who was colouring in and overheard piped up and said:
"None of us are super anything. We are all just people."
Ah, the simple, sublime and superior wisdom of a five year old. Love, love, love it. Happy Birthday Auden - you are such a wise and wonderful being.

Finally, today Pete and I are celebrating the 12th anniversary of our marriage. Happy Anniversary to my gorgeous huband.

Thanks for checking in on us and love to you and all your families. x