by Alison | Oct 20, 2016 | .
There are many times that I stand in front of you, and you see me, but you only see what you can see.
Often whilst I stand in front of you my body is collapsing. It begins slowly…then splinters… a thousand shards of skin falling, piercing, scratching at flesh as it falls, painful. Until bits of me lie scattered at my feet. Sore and numb I quietly bend over and as I extend my hand to touch my bits they begin to glow softly, life returning.
As I gather them to me, they become soft and pliable, warm and safe and I wrap myself within myself once more.
My skin, myself shatters often, but to you and the world I look like me, the person you see and know. And I hide it so well.
There are other moments that my chest feels like it is about to explode. There is a feeling of expansion, as if every space around my heart has ballooned and is pushing all my breath out making it hard to breathe. It hurts. At other times its a tightness as if everything is constricting, sucking my breath from me.
And all the while you engage with me I am experiencing my grief moments. I swallow with difficulty, smile and reply.
These are events that I cannot blurt out and say ‘”hey I’m having a moment!” It is nothing you can see or touch so it is not easy to understand. I often wish that when you (whomever) are in front of me and I am experiencing this, that you could know so that I do not always have to do it on my own. But in truth, you cannot help me with this, and if you knew it was occurring it would create issues in that moment, you would feel helpless, or the group at a social occasion would feel uncomfortable, or it would disrupt the harmony in the work flow.
It’s my reality and grief that I must carry.
Writing this is not to upset you, it is just what I have to cope with and to learn to accept as part of myself. Not every day, mostly unexpectedly at random moments. As each day passes I learn to wear it more easily. And slipping in and out of these moments is becoming part of my life routine.
Don’t tell me to get better. That will not happen…ever. I work hard to keep my mind busy and I try to enjoy every day. I suffer quietly, in silence. I cry and I write. I remember and I shout, or talk to my children. I feel and I love. And I laugh.
I embrace you and those around me and I thank you for holding my hand, as the friendship, love and support sustains me and helps me feel whole.
Milestone days of remembrance are a reminder of the minutes, hours, days that Aidan (and Laila) are not with me. I sometimes feel that Aidan is following my life in parallel , piloting a boat, and meandering downstream waiting for us to intersect at that final waterfall of life and collide as we fly over, together.
To those who suffer – I wish all good things for you, and moments of great happiness and joy.
My boy…Aidan Cale
25/6/1986 to 20/10/2010
by Alison | Oct 10, 2016 | .
October is here again and a time to celebrate two weddings and a funeral.
How glad am I that we did have two weddings, especially the 1st in the hospital as it was a special day for us all. It did not matter than we were in hospital. It had become our second home and the usual flurry of activities that happen in preparation for a wedding certainly took place.
Aidan gave me strict instructions as to what champagne to buy and which wedding cake to buy – for both weddings! His motto was we don’t drink shite…We all had new clothes, beautiful flowers, Chelsea doing hair and the sun shone on our beautiful day.
I believe it’s a joyous occasion when two people who have been committed to each other, through good health and sickness, share their love, not just to each other but also to their family and friends. To celebrate that no matter what life throws at you, or how many obstacles you have to encounter there is still a will – a desire – a love – joy – laughter – hope and sadness to embrace.
Why not shout it out loud and live in the moment, and share it – it’s a wonderful thing. Hope gives us that.
I remember those two lying together in the hospital bed, writing their vows and teasing each other.
I was so proud and bursting with love to see two young people who had endured so much, and crammed a lifetime into their ten years of knowing each other, rejoice in life and love with tears and smiles and beautiful vows to each other. Making new memories that we could carry with us forever. It was an extraordinary moment in my life.
My boy had a huge heart and immense courage as does his bride.
Aleisha walked beside Aidan courageous and determined. She deserves so much more and I hope that as each year passes that life is kind and showers her with all that she desires.
Those of us who hold the hand of an ill partner or child just want them to be ok, we wish for miracles, we deal with each hurdle as it happens, we cope and cope and just want life and goodness to be bestowed upon them. We grasp at hope and we just love them, and we watch.
I am so sad, it fills every space of me but I’m also filled with love and joy. How lucky was I to have such a precious son, and the awesome daughter he gave me, and her fabulous family that I have adopted. As well as the incredible people we met along the way and the family and friends who stuck close.
Thank you A.
To my double A, happy wedding anniversary today and for the 15th.
X the mother.
by Alison | Jun 25, 2016 | .
I was chatting to my therapist about life, death, time and grief. Fortunately she does not refer to the usual published stages as she knows that I am not a ‘one size fits all person’.
I never believed that Aidan would leave me.
I’ve grown up experiencing death and dying. As the years passed, I always half believed that I’d be lucky to reach 50. Having not had the experience of watching my parents grow old I did not expect my kids to watch me wither either!
Even when Laila died it never entered my head that it would happen again, to me.
I just lived life as we all do. It’s interesting how we don’t contemplate life throwing us hurdles to deal with and death.
When I look back over my life, and even now, life just happens. The sun rises and it sets. We are focused on our lives, many make long term plans or set long term goals. We just believe they will happen.
So did I.
How lucky was I to have a boy and a girl. They loved each other and life was good.
And then it changed in a split second. We travelled that road, coped with diagnosis, treatment, sickness, intensive care, operations, more intensive care and making the decision to turn off the ventilator.
Life went on and so did Aidan and I. We grieved together, grew closer, and journeyed a new road together. Then he jolted my journey and we immigrated.
And so a new life and a new journey began with its own ups and downs. But all through this I never once thought that Aidan would not be with me forever… or until it was time for me to go. It never crossed my mind that anything more would happen to me.
Boy was I wrong.
I do thank the universe that we have no idea what lies before us in anything we do. It would take all our joy and excitement away.
After Laila died I changed the way I thought. I lived every moment of every day. Not really fussing too much about tomorrow or the next moment. I just hurtle along and deal with life as it hits me.
Life had got into a rhythm for A and I.
I enjoyed watching him grow into a young man and find his passion in work and in life. We enjoyed each other and I just loved him and was so proud of who he was.
Life was lulling me and I was starting to enjoy that.
But that was not to be and bam, in another split second my world was torn apart. Aidan’s guilt at putting me through this a second time was harder to bear than his diagnosis. I believe our love for each other overcame that.
And so I was plunged into another round of similar, but not the same.
I did not want to think about the possibility that my boy would leave me. I just got on with the day to day routines of life which consumed my days. These were not your average days but seeing my boy every day just made me so happy.
Even when we sat in hospital for hours waiting for tests or chemo or radiation or for bloods, we found something to laugh about, we smiled, we talked, we just lived that moment. We were like the three stooges at times. Aidan could always make us laugh.
And then it was time for Aidan to fly and to leave Aleisha and me behind.
My only regret is that I never had enough time with him.
I miss Aidan every day. I miss him every minute of every day. If I stop and close my eyes I can hear him and feel him. And I talk to him often. And to his sister.
If I could give young people a message it would be to make the most of every day, and do it with understanding, as not everyone around you is sturdy on their feet.
I have been saddened and hurt so much by the ‘youth’ in some. My hope is that as they experience life and mature, they might come to understand and accept, and respect, what us as parents do for them. Youth has a way of throwing stones and causing undue pain. Much of it unwarranted.
I know we travel life with blinkers on, and we are never prepared for the unexpected, and we are not taught how to deal with it, or how to wear our grief, or how to come out the other side scarred and beaten but standing tall.
It takes strength and the ability to see beautiful things in every day. I have taught myself to look up. To admire and see glory in every morning so that I can get out of bed. To find time to laugh, to keep busy so grief does not take over, to enjoy my friends and life as best as I possibly can, and to give it my all.
I will cry and I will remember and I will be sad. But I am grateful that as the years are passing that I am remembering Aidan more and more as he was in his life. Over the past few years the memories have been stuck. Now I’m not only at the end, or only in the last few years but now I’m seeing him as a child, playing rugby in the mud, playing his saxophone, doing his homework in front of the fire or playing with his sister.
They are bittersweet memories but ones I am happy to have.
Happy birthday my darling boy.
I’ll love you forever, I’ll cry tears for you forever, I’ll miss you and my heart will hurt forever, but I am so grateful that I had you, that I held you and that you knew how much I loved you.
We will celebrate your life for you, we will blow out your candles, we will drink a toast to the beautiful, wonderful boy you were and we will share our love and memories.
Your mother forever.
X
by Alison | Jan 9, 2016 | .
Today is Laila’s 21st birthday
Laila was a loving child with a delightful attitude and a welcoming embrace. I loved returning home and seeing her with her nose stuck through the security gate, squealing with delight and laughter that I was home. In hospital she would be so happy to see me and would always welcome me. That is how I think of her.
She was an unexpected gift and one I will always treasure.
I have visions of how she looks, and of her and Aidan, together.
I think Aidan wanted a sister from the time he took his first breath. That desire was constantly made known especially to Santa on his present list.
When I told Aidan he was going to have a sister, he beamed with happiness. That delight never abated and it was wonderful to watch the two of them together and the love they had for each other.
My life’s journey has been strewn with difficulties, but one of the most difficult was having to tell Aidan that his sister was sick, and then a few months later that she was going to die.
The Doctor had talked to me when Laila was diagnosed with Aplastic Anaemia. She said Laila had a 50/50 chance of survival and if the time came that we were being unfair to the child and being selfish, she would tell me.
In the early hours of Christmas morning 1997, I was woken by a telephone call, urging me to get to the hospital soonest. When I got to intensive care they had put Laila on a ventilator. Her doctors decided to try a procedure they had not attempted before on a child, as a last hope that her body would allow itself to heal.
I drove to see Aidan and arrived before breakfast. Instead of celebrating Christmas and opening gifts I sat and told Aidan, his father and granny that we had to prepare for the worst and that Laila might die.
It broke my heart to see Aidan weep with such pain and anguish.
We had a week together in intensive care.
I usually arrived at the hospital about 6-ish and would sit next to Laila so that I was there when she woke up. On the 31st of December during ward rounds, her Doctor sat beside me and said it was time.
And so began those dreaded calls that I had to make. Explaining that I had made the decision to take Laila off the ventilator and to let her be.
I invited all those close to me, and to Laila and Aidan, to share the time if they so wished. We arranged to be together at 3pm. The Doctor agreed to have Laila taken back to her ward room that she knew, and which we had made into her own.
Whenever Laila had spent time in hospital, we always put photos on the wall: her own blankets on the bed, her pillowcase, her toys and her favourite doll, plus beautiful fresh flowers.
I was questioned if I was making the right decision, but I knew in my heart that she was tired, as she had bitten me a few nights before, something she would never do. But she was frustrated.
She had tubes everywhere, she could not lie on my lap and I could not lie with her. Everything she wanted was too hard… her eyes would bore into mine and my heart would hurt.
We took her off the ventilator and onto an oxygen tube that sat under her nose, her oxygen bottle on the bed and we wheeled her to her room where those that loved her waited.
The nurses put Laila on my lap and removed the oxygen. I held her quietly and just looked at her, whispered to her and loved her. Aidan sat beside us and the room was full of love, memories and sadness. I will be eternally grateful for the support and love we were shown that day.
Time passed and Laila just breathed softly until she breathed no more.
My beautiful 11 year old boy who held his sister when she was born – who said hello and welcome to the world – was now a witness to her passing.
I put Laila onto Aidan’s lap and let him love and hold her, and to say goodbye.
Laila Vaun Rip – the bestest daughter and sister
Born 9 January 1995 – Died 31 December 1997 – Buried 6 January 1998
Time does not heal, it just helps you to keep breathing…
by Alison | Oct 20, 2015 | .
I was driving through the Hinterland, listening to the radio and enjoying the bright blue sky and warm sun when the music stopped and an interview began.
Obviously not my day as they were interviewing a social worker from a children’s hospital who was discussing how to deal with kids in intensive care. Then in the ad break they were promoting Maccas and their drive to raise funds for sick kids. I sort of slumped a bit in my seat and my body felt heavy and slouchy. The interview picked up from where they had left off, and the interview got more intense about the need for honesty with sick kids and especially their siblings.
That got me started.
Had I said the right things to Laila and Aidan. Had they understood and had they been OK. Did I use the ‘die’ word and not the ‘sleep’ or ‘pass over’ words….
Words were tumbling in my brain as I cross-questioned myself and looked back trying to remember.
I know that my kids were fine and we all knew and understood what was happening and we all loved each other with ease and honesty. There was no need for me to be falling into this space.
I looked at myself in the rear view mirror and wondered why my face is not etched with deep ravines and gorges reflecting my tears and sadness. I feel as though that is how I should look, marked.
My face is not a window to my soul and I don’t think anyone else wants to gaze upon a crater like face, crazed with grief. I know that laughter and a smile makes me feel better and I think it makes those around me feel more comfortable.
But inside I am heavy with a sad heart.
I find it hard to believe that 5 years have passed … already! It is quite unbelievable and difficult to comprehend.
Time keeps passing, new memories keep being made, the sun keeps rising and the moon will set.
I too will keep pace with time until my pace falters and is no more. I will keep count of the years and watch the clouds dance above me and hold my memories close and listen for the laughter in the wind.
I’ll sit on the hill beside my pirate chef and toast my boy, remembering all of him that I love and miss and feel sad for me.
The sun will set, and as the stars rise I’ll head home. The memory of the moment deep within me, saved not to be forgotten.
I’ll love you forever A
your mom.
20/10/2010
by Alison | Oct 10, 2015 | .
Stepping out of the shower I stepped between two worlds of time.
The now continued to hum around me but the past stood alongside me and with me.
It felt as though time set its own speed according to the pace of my life and activities. Sometimes languid, at a steady trot or speeding past at an unstoppable pace.
I stood wrapped in my towel with the past whispering in my ear soft and gentle.
The years fell away and five years became a moment. The familiar voice hung in the air. My tears ran unabated and my heart was grateful to hear those tones and the playful humour and affection that sits in the timbre of them.
Swiftly the end days were back and vivid in that step between times.
For the past few months my memories had been that of watching a small boy grow and repetitive. Remembering those baby years, the pre-school and school ones, events, holidays, rugby matches in the rain and the mud, saxophone concerts and the pleasure and delight of passing time.
That beautiful warm smile, the boy with a huge heart and a big soul who held my hand and brought me endless days of warmth and love.
September was childhood cancer awareness month and for some it would be a celebration of life as it is to me.
I celebrate Laila and Aidan’s life every day. Not every minute as daily events keep me focused and on track. But somewhere in my day will be a moment – a reminder.
All it takes is a feather, a book, a photo, a familiar laugh, a song, a gift, a memory recall or a sunset.
The push to remember will never go away as it threads its way into my life, blending itself into the texture of my skin, becoming a willing accessory to my everyday life.
A child’s lifetime of moments and spirit will find a way to nudge my day. Often bringing a smile or a glow to my heart. Other times it will be my undoing as the pain and remembrance create a ‘why’…
I miss you, my throat burns and the despair engulfs me and I’m forced to acknowledge the sadness before I can put it to rest again.
My name is called and I’m jolted. The pain in my heart eases and my mind settles down as time strips back and leaves me aware of where I am standing, in the present.
It’s another new day and I need to step away from the past and back into it the now.
Wiping my face I look forward to another time between worlds and time.
October is full of days to be remembered and celebrated.
10/10/2010 a wedding and a daughter
15/10/2010 a real wedding
20/10/2010 a passing
26/10/2010 a funeral and a celebration
One step at a time…
AAA
