by Alison | Dec 31, 2018 | .
I decided to look up Aplastic Anemia and see if any progress had been made in their success rate. To many this condition is unknown as the incidence of aplastic anaemia is 0.7 – 4.1 cases per million people worldwide.
21 years ago, I lost my beautiful daughter to this rare disorder. I was told that she was a 1 in a million as at that time they had only seen it once before in a child of her age. The odds …50-50
It is not cancer, but serious, as the bone marrow is severely affected and there are very few blood cells left in circulation. Without adequate numbers of blood cells people with aplastic anaemia can become anaemic (low red blood cells) and more susceptible to infections (low white blood cells), and to bleeding and bruising more easily (low platelets).
Needless to say, it was like a fast rewind, as words of immunosuppressant drugs, immune systems, platelets conjured up memories of anxiety, disbelief, hope, happiness, sadness and grief. And of the beautiful baby girl who entered the world and filled our lives with unmeasurable love and joy.
21 years ago, I made the decision to take Laila off the ventilator and let her be. There were some who were angry with me for making that decision, and others accepted more easily. Aidan who was 11 at the time cried as though his heart would break. Mine was breaking but I had to be steadfast.
When Laila was first diagnosed her Doctor said to me that she would do everything in her power to try and make Laila better but if she felt that the time had come to make choices, she would tell me. That morning when I arrived at the hospital and stood next to Laila as she slept, she looked me in the eye and said the time had come. There was nothing more they could do and that it was now unfair to keep putting this child through more pain.
I understood as at Christmas, her presents still at home, I had stood next to her and watched Father Christmas come and wish her. Later she bit me and stared at me, those big eyes bored into my soul with sadness and made my heart ache. I couldn’t hold her just sit next to her and wrap myself around her as best I could.
So, I made my decision and told those close to me and just after 3pm on the 31st December we unhooked the machine and pushed her out of ICU, outside and back into the kid’s cancer ward where she had spent much of those past months. A small oxygen cylinder at her feet with a nose clip which helped her until we got her settled. We took it out and she lay on my lap and just breathed so quietly and slowly until her breath just eased away and all was still. Utter quiet is what I remember surrounded by vases of beautiful flowers, and filtered sunlight pouring through the windows.
Why oh why – I have no idea – and never for one moment did I think I would have to endure something rare and similar again… but I did – and the why oh why just rattles louder in my mind.
It is hard to believe that it is 21 years ago.
I do wonder what my happy child would look like today, as she will be turning 24 on the 9 January. Its all I can do …wonder… and try not to drive myself demented with questions that will never be answered.
I will drive to the hill after work and sit with A, and gaze out beyond and remember.
To the small person who lifted my heart to places I did not believe were possible – who bought joy to her brother and her mother and those that knew her – I give my gratitude.
Laila Vaun Rip
09.01.1995
31.12.1975
by Alison | Oct 26, 2018 | .
October is a month I celebrate two weddings, a passing and a funeral. It’s a time I reflect on what is and what has been.
I miss Aidan, and Laila in more ways than I can ever express. A deep-rooted yearning and sense of loss that I experience all the time.
I miss many others too that are absent from my daily life. The ones we don’t always talk about. As a parent, a friend and as a migrant there are many that I love, have loved, that have moved away or been left behind.
The cliché of someone being in your life for a season is a nice explanation of trying to understand why this happens. We love people and its painful to say goodbye. Sometimes that goodbye is harder if they do a U-turn and just leave.
I struggle to work out how these bonds are so easily broken, or why some die before others. Random or ordained …I carry so many scars, the hurt I bury deep within. To survive I need to stop tearing myself apart with adopted guilt, despair and unanswered questions.
I’ve asked myself so many times why I am still ‘here’.
Why are some oblivious to others, just forget them, or treat them disrespectfully, why do some inflict pain on each other, why do we still love and keep getting hurt, why do some have to die too early. It’s a cruel world but also a miraculous one.
Aleisha is soon to give the breath of life to her bump, and a new life brings renewed hope.
The seasons come and go, nature binds us all together, the storms clear and the sun warms us, the stars envelop us and suck us into their mysterious world.
I sit on our hill and look out over Aidan’s flame tree and see hope. Beyond in the valley the earth is greening up after the rains, the sun is beaming down, and the birds are in full song. Cars swoosh past behind me as they move people to school and to work.
It is fitting that tonight we are holding a fundraising event for breast cancer. It is one of the ways that I can pay it forward.
Life is not for nothing – it’s the time we are given to grow, to nurture and learn that even though we can suffer terrible sadness and heartbreak we can give back, and make a small difference in this world – to a stranger, to a child in hospital fighting cancer, to a survivor of breast cancer, to a homeless person or someone suffering abuse, or saving a koala. Its about becoming more open to the good in each other, to put selfishness aside and to try to not take this life for granted. We only know this moment and the past.
I sit with my memories and celebrate Aidan and thank the universe that I have these to hang onto.
Miss you, your warmth and kindness, your strength and your love my darling son
by Alison | Jun 25, 2018 | .
We all need something to believe in, to make sense of this sad, crazy, happy world we live in.
Last Friday I sat amongst tears at a wake and heard of fairies, hope, life, accomplishments and sadness.
I wish I could see the fairies dancing at the bottom of my garden, and all our lost ones dancing among the stars. I hear them, I feel them over my shoulder and in my space. Be that love, or energy or just belief it doesn’t matter because as I said to my beautiful therapist, it doesn’t get better…
I just hurt, I’m just soo sad, I ache, and I miss my children and I accept that I will till I take my last breath.
When brother Michael was with me and we were walking through the rainforest we talked and agreed that this is an awesome place to live. I have Aidan to thank for that – it was his dream and tenacity that helped me make the choices for us, that brought me to the place where I am today.
His darling Aleisha will soon be a mom and bring a wonderful addition to our family. I know this is not my mine but I have loved so many that are not mine, as I will this one. This much loved baby will add joy to my shattered heart.
I don’t live with regrets. I am sorry for some of the choices I have made in life, and how I handled those choices but good or bad, I’ve lived with those choices and made them work or moved on.
Life is about choices, in seizing the moment and putting yourself in the path of random events and capitalising on them. Its about taking a leadership role in your life. Errors and failure, disappointments and heartache will always happen. Its how we get up and go forward and get stronger that’s important. Recognising the need to get back up gets you stronger, and helps you push forward and upward.
Life keeps me here, anchoring me to my sadness but also giving me time to seize moments and keep getting back up.
Its easy to act in the moment with all our technology, and hurt and wound as we move through our digital world, removed and distant, without a thought of consequence or emotional backlash.
Consider your next choice. We only know this moment and the past, the next moment could be your last, or it could be the start of something new. Embrace life, be aware and care for those around you.
Don’t live selfishly – think of others and pay it forward.
Happy birthday my darling boy – Aidan Cale XXX
by Alison | Dec 31, 2017 | .
Have you ever needed to be busy, to fill the silence, to fill a void, to maintain a sense of normalcy? It seems to be a difficult concept for some to understand yet I believe there are many of us who do this and many reasons why.
A question I have been asking myself of late is when is old age, how old must one be to be considered in your ‘older years’. With so many people still active in business in their 70’s that I know and admire, then the answer to myself is 80. So then how old should you be to retire… or is that a bygone concept. Do we ever really need to retire?
I’ve been told to not work so much and that I should take more time out. If I should take this advice I wonder if they will be there to scrape me off the floor should I sink that low, or if the emotional darkness should overwhelm me if they will visit and talk to me…
Advice is easy but I often wonder if this advice is coming at me as a means for us all to conform to the concept of retiring… of getting to that age when we should be slowing down…of all being the same. Why?
Why on earth should any of us retire if the drive and energy is there spurring us on. Enjoying the daily challenges, interacting with like minded people, being creative or just keeping busy …reveling in the fact that life is precious and can be fulfilled in so many ways. I think its personal.
For peace of mind I keep busy, the restlessness of my inner self and my emotional turmoil is pacified by busyness. Creating a direction, a reason for waking, and a sense of purpose. That does not mean that I don’t find the time to enjoy a coffee, chat with a friend, sip a wine and celebrate the day, or travel.
Its been about slowly finding my balance. As time becomes my equilibrium, a bit like a metronome that keeps pace of where I am and the changing beat, I can feel that rhythm alter, mirroring my sorrow and the acceptance of time, as well as the joy enjoyed, and the happiness felt. Its complex but it’s my reality.
Work helps set me free so why would I want to slow down, to grow old before my time because someone came up with the concept that work is a drudge and should only be done for a period of time. Someone also said women should be paid less than a man, should not be able to vote, should keep quiet…well… I say it’s time for a different reality.
Lets enjoy each other, only grow old when it suits you, find that peace within that lets you swim upstream and stand tall.
Fact is I’m in pain and will always be in pain. I’m also healthy and happy. Family and friends and work give me a reason to remain and to be me.
I stand tall and embrace each day, tackling each minute head on whether it is in pain or in laughter. I’ll keep fighting until life decides I’m done.
My beautiful daughter slipped out of this life in my arms before we could enjoy a new year together with our beautiful boy at our side. Today I acknowledge my mourning not just for Laila but also for Aidan as I face another year ending without them. However, I will raise my glass and celebrate the first day of a new year. It’s the circle of life, it’s the swing of my metronome, it’s the essence of who we are.
May the force be with you and 2018 be whatever you want it to be, dream big and reach for your star.
Onwards and upwards
by Alison | Oct 21, 2017 | .
A fallen soldier was returned to Miami airport and the picture of his wife lying draped over the casket was a heartbreaking sight.
I have spent the past week visiting Civil war museums and WWII museums seeing rows of crosses and reading sad stories.
It’s not important how we lose, it is important that we never believe we have to stop grieving.
Yes, it is a process but we all grieve in different ways and we are not text book cases. Most of us will grieve forever. Those who have not experienced tragedy are full of words, of comfort, of telling us it is just a matter of time and then you will be better, it just takes time…breathe and get better.
But in the world of grief, time is forever.
I believe that we all need to learn tolerance for those who are bereft. The best way of doing this is to help us by remembering the small things that eat at us, that makes us sad and crumble.
Start with what is important, remember special dates. Such as birthdays, anniversaries, maybe Valentine’s day, even Christmas and Easter when some feel alone or notice the absence more acutely. These are the times when the pain hurts deepest and never abates as each year passes by.
It is these special days that make us sadder and the memories sharper.
Grief is absorbed into daily routines and memories occur at odd times during our days and nights. Sometimes a glimpse at a photo, an action, a deed, or a regular chore conjures up a memory, a face, a moment shared, a pain, a sadness.
We don’t like talking about it, we don’t like having to always say why we are sad, we don’t like having to remind everyone why.
It’s a wonderful feeling to know that others remember too and are celebrating with us, and sharing our journey. Such a relief and so special. It feels so comforting to be reminded that our loved ones touched others and will always be thought of and not forgotten.
Gone but not forgotten – loved eternally.
Aidan left us 20 Oct 2010 – too soon for me, I know I am selfish and would have kept him at any cost but life has a way of deciding for us.
Love cuts us to the core, memories give us joy and moments of sadness. I will take them all – as to remember and rejoice that beautiful soul who was my boy is a blessing, and one I hold dear.
Thank you to all who walk this journey with me
X Alison
by Alison | Jun 25, 2017 | .
As June creeps closer I feel changes in my body, my sleeping patterns and my emotional stability. My inner time clock is preparing me and reminding me of the time of the year, perfect timekeeping for birthdays, anniversaries and festive occasions.
I’ve recently being sitting in a soggy place of sadness because of what someone has said. Their presumptive attitude of me and my feelings, and their dramatic way of putting that across initially just made me angry. But letting those words sit with me for a while and then looking at them, and talking about them made me realise how easy it is for them to throw words around – to presume and to be dramatic in the process all the while not having a clue what they are talking about.
I understand my grief.
I know where it comes from and why I have it wrapped around me. I get why sometimes it constricts me and other times it just floats around me. Occasionally it tickles my throat and prevents me from getting my words out. Other times it’s on the words I speak or the lines I write. Then again it can rear itself as a cyclone of pain, tearing through my bones, picking up my broken pieces and smashing them about. Or sitting in the calm of the day and seeing a bird fly above or a feather float towards me it can grip at my heart. But there are days when I can walk through the hours and it sits quietly within. I can gaze at the day and feel solace with it.
I don’t need therapy to teach me that.
I go to therapy to deal with the unpleasant stuff that comes my way. To try and make sense of pain caused intentionally, or selfishly, to make sense of the world or why I am still here. Why I should stay here, and why I should not carry guilt that some would like me to carry on their behalf.
I love my therapist who tells me that I’m logical, and caring, and that I would repeat what I’ve done because it is who I am, that I love and care, that I don’t like seeing injustice, that I want to help others and that I am me through all the pain. That some of life feels unfair, and the biggest injustice is that I lost both my kids, that life does feel unkind but that I embrace it, live it, feel it and carry on.
The pain is the memory. The memories involve the pain and the grief, but it also allows the joy of memories to heighten and rise above.
As I write this, the clock has moved past the hour and today is my son’s birthday. My throat is thick and tears have sprung and glisten and blur my vision. I ache. My heart pounds and I just sit in this sadness that is seeping through every pore and spilling onto the keyboard.
Love does make your chest hurt and feel like you’re about to explode… but so does grief.
A distant bird is calling, the night is still yet, and I can hear Aidan say ‘hello mother’ ever so quietly. I often tilt my head because I hear him on the wind, or on my walks. I talk to him, I talk to Laila. I tell him how much I miss him and how much I love him. I tell him how much I miss being hugged. I tell him how much I miss him telling me he loves me. I ask him to stay safe and keep Laila close.
My silent clock will keep reminding me of the seconds, minutes, hours, days, month and years that are passing.
My body will always remind me of my children, my love, my sadness, pain and grief. But it is also the keeper of all the memories, the moments of happiness, of sadness and of my unconditional love for my children.
Later today when the sun has risen I will smile and toast you, my boy, a happy birthday. We will celebrate you, and sit with you on the hill basking in the sunlight…and I will let those memories of your beautiful soul wash over me.
Aidan Cale – thank you for being my son.
