My every breath


My every breath…..

feels claustrophobic

is a struggle

is like an elephant sitting on my chest

is lost in solitary confinement

is like breathing solely through a straw

is like running a perpetual marathon

is strangled by my absent functioning muscle

is like breathing in and out through a balloon

is stolen by windy days

is consciously controlled tirelessly

is my minds sole focus– in, out, in, out……

is my conscious intention…second by second, minute by minute

leaves no fog on windows…no message left

scares me! is it my last?


is savoured

is survival

is an essence of life

is a blessing

shares my story/journey

tells you to live in the moment…each breath

tells you not to take it for granted

is my expression of who I am

affirms I am still supposed to be here



15 May 2016


oxygenniv (2)


11 responses »

  1. My darling daughter we miss you so much. We celebrated your 40 the birthday without tears. We focus on happy times although events after you passed away got awful through no fault of us here in Perth. Before the service in park we we’re subjected to an awful experience NO family should ever have. You must have looked down thinking what? Why is he doing that? We had no say or anything even your wishes to be spread with family friends was robbed from us. Your poor sis was given 3 postage envelopes with parts of your ashes in them. It was too much. Why??? But I truly believe guilt and conscience will get to him (I can’t even say his name sorry) but from that day until he dies I curse him. He will walk this earth sad lonely ridden with guilt and it won’t go away until he makes amends. He cut ties with all of your loved ones from the day he left Perth.

  2. We miss you soooooo much, we have all changed since you passed away, as your mum its been torture although you were so ill you held on toll you could no more, what a warrior what a brave woman.what an amzing daughter. To lose you was removing part of my heart and soul. I am left here alone stumbling to find the happy place, there used to be one but am failing to find it at moment. When you left this world behind we saw the bad and good in people , the things you’d not like and things you would be proud of. You are probably up there thinking, whats going on??? This isn’t what i expected this isnt what i thought would happen, well, it did and it does. To be honest im glad that at my age this cruel world will be left behind me when i join you and oooh the peace, i miss you every day, my heart aches so much, the thing i dont get is why people abandon the ones left behind, its funny but my best friends are there for me….i look through your book a lot sometimes cry but its ok mum is allowed to. A mum that loses a child whether she or he is young or old the maternal pain still hurts just as much, it never fades away..nor do the memories of the child they carried in their womb and carried with love and born to give unconditional love. You were that joy…visit me, ….i love you beautiful daughter…giant hugzzz mumsy xxx

  3. You are a beautiful soul who has touched so many lives. I admire your strength and am so honoured that our lives crossed paths. Bless you gorgeous girl. Thankyou for including me.Love you xxx

  4. My Beautiful daughter Njari I want you to be here forever. Accepting that you can’t is hard for a mum to know. I still remember the day you were born. Next to me you barely made a noise. Oh how much joy you bring into my life ,a woman who has a strong heart, mind spirit.It has changed me and everyone you met or knew for the better. Wise beyond your years. It’s selfish of me to make the impossible possible. So with a heavy heart I have to accept that every year,months,days,hours,minutes .They are all precious and my way of thinking is oh ! How lucky was I to even have that time with you. Never a moment goes by you are in my heart and mind. My last born .A gift for all who know you, love you. From mumsy

  5. Big hugs my dear, I am speechless in front of such struggle which you yet find a way to bring about in such a poetic way. You are strong and whole-hearted. Thinking of you. xoxo

  6. Dear Njari, heartbreaking and at the same time heartwarming! Your spirit & energy have touched many people during this earthly period of your presence, do not forget that, even in this hardest of times. Thank you so much for being part of my life, even if separated by continents and oceans. My thoughts and prayers are with you. And i know & feel you will understand what i mean when i say ‘live long & prosper’, for you have and you will! Much love, Jeroen xxx

  7. My beautiful daughter i ache reading these words. I know how you hold on soooo hard and how you struggle every breath you take. I love you as much as the day i had you and you took your First breath. Unconditional love and joy. Not a second goes by when I’m awake that you aren’t in my thoughts. As i try to night i picture my arms around you holding you. My daughter your strength is amazing as are you. I’m so proud to have had you for the time you are here. It is selfish for ne to say please please not now !! Im not ready for this. But to say you are allowed to set yourself free when you are too weary to fight your body anymore. I love you always .you were my last baby i tried to think you are invincible. …i love you Njari. .from mumsy xxxx

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