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Saturday, April 19, 2014

So Many Hearts..

Today is another day where I wish I was a better mother. A better human being. I cannot connect with all the wonderful things in my life that I have to be grateful for. I feel at a distance. I am selfishly in my own head, tired, intolerant and unable to enjoy the moments that I have been graced with. I hate myself for this and for all that other stuff that I should be doing but can’t. So deeply tired. So many things I don’t know how to handle or understand. Please forgive me for sharing this with you and be patient as this blog gets better. I am lifting myself up with each word I write in sharing honestly with you.

I want to go back to the person I was before I knew that there are no reasons for things. When I thought things made sense. In my professional life I always end up drafting a spreadsheet of some given task to track what is working, what isn’t, what could function better. It is never part of my job description but it is something I can’t stop myself from doing. And I know I add value as a result of it. I am good at identifying ways to improve procedures, ways to reduce risk and control outcomes as much as possible. My work environment benefits but this natural inclination of mine does not sit well in my personal life.

If I were to do a spreadsheet of everything that I did with Oscar up until the day of his diagnosis I would be no clearer about why he got sick or how I might prevent it from happening again. Likewise, if I were to do a spreadsheet of all his activities since he has been in remission and compare them with another little boy whom we journeyed with and who is in my heart each day  – there would be no identifiable reason why one boy is still in remission and the other has relapsed. I cannot apply my usual analytics and the Doctors cannot even apply a medical model that will answer those questions. They are unfathomable.

I want to fathom them.

Last night as Oscar was going to bed he told me, “Mummy, I have 6 hearts” and I asked him how come and he said, “I have one heart for Marshy (our cat who sat on his lap and gave him comfort when he was critically ill and who is no longer with us), one heart for my nice dream about Marshy (he dreamt about him the other night), one heart for Auden, one heart for mummy, one heart for daddy, one heart for Mellow (our other cat), one heart for Tiger (new kitten) and one heart for Lilly (other new kitten). I have SO MANY hearts.”

Despite all the selfish negativity that I hide inside my mind these beautiful words of Oscar’s cut through the fog and crap and made me smile. Bless his cotton socks.

My brain is overloaded with too many burdens and Oscar reminds me to go back to that simple place. Of course, Oscar doesn’t have to pay the bills, organise the dinner, shop, clean, wash, parent effectively and so on. I wouldn’t want it any other way. May his childhood last long and be rich with imagination and wonder!

When I disappeared from Auden’s life when Oscar was in hospital I think too big a burden was placed upon Auden. I hate myself for that. I couldn’t help it, but I hate it. Most of the time I let it go and then I have a parent teacher interview and I walk away devastated all over again. I can’t take back that time that I wasn’t there reading to him and helping him understand the world. Nor can I take back the fact that our particular world at that time was beyond my ability to help him understand. I did my best. I would sit him down in the corridors of the hospital as he screamed at being taken back home and was so deeply distressed. I’d sit down on the ground in the middle of the hospital walkway and take him in my arms and just calm him down. Then I would gently explain that he had to go home without me but that it would be okay and I would hold him and tell him he didn’t have to go anywhere until he was ready. And I would wait. And he would eventually pretend he was ready. And I would pretend I was okay too and then I would return to Oscar and ‘model’ the resilience he needed by pretending some more until we all pretended ourselves into some kind of functional universe. If I had done a spreadsheet I guess I would have identified that we all did the best we could.

The only one who didn’t ever pretend was Oscar. He made every little thing very clear. If he didn’t like the way a nurse did something he screamed. If he wanted something done a certain way he pointed it out (even when he was not yet verbal). To this day he is still making sure we all know exactly how he is feeling all the time. LOUDLY.

Auden, though, is quiet. He keeps things to himself. He is a thinker and he is smart and yet he keeps that hidden from his teachers. I constantly desire that everyone could know him as I do, could see his inner light and his amazing courage.

Interestingly, even though Oscar won’t pretend about his feelings and his needs he is the ultimate at being pretend superheroes and playing imaginary games. Auden somehow lost that phase during Oscar’s illness and he has little interest in imaginary worlds. He’s not keen on tv or movies and the stories he requests every day are real stories. He wants me to tell him stories about when I was a little girl, or when he was a baby and he insists they must be true and is very good at detecting when I am embellishing.

I’m so glad he has sport to escape into. He throws himself into it with a gusto and lets himself shine. It is a wonderful thing to watch.

Yes, I worry. Too much. I need to find all my different hearts again and revel in their magic. I need to turn up at OOSH and know that the staff can find my child without them telling me to go searching in all the toilets. I need not to have to panic because they can’t find the children they are supposed to be watching. I need teachers to slow down and stop pushing so hard for results and to find their hearts. In all this pressurised parenting has everyone forgotten how lucky we are to have children who are healthy, happy and alive to being in the moment? There are so many children with illness or adversity to struggle against, so many children who have real disabilities and hardships that they turn into gifts of love and light.

So many hearts.


It is the sound of the primordial heartbeat.

The sound of who we are.

Take care beautiful people. Remember that you have many, many hearts and share them with one another. Much love, Cindy xx
P.S. the kittens are a reward for Oscar giving up his bottle. His bottle got him through his treatment and through many a horrible night in hospital and he is so deeply emotionally attached to it I don't have words to explain. The dentist and Pete and I have tried everything. Finally, he said if he gave up could he have a kitten. I agreed thinking he would never go through with it. And so it is I am bribed again by the most determined young man on the planet. xx 
This blog is dedicated to the staff and volunteers of 'Make a Wish Foundation' for their hard work and dedication and for reminding us what childhood is really about - making joyful memories together. Thank you for a great day out on the harbour. It meant so, so much to us.  xx
Auden in one of his happy places - the basketball court

Auden on the boat with Daddy

Oscar on the boat

Pete and Auden driving the boat

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