Changes

“The accident caused an alteration which involved a quite unnerving primary change. It produced the unsettling sensation that I had been forced to become something different from what I was, and, more strangely, that I was both the spectator and the subject of the change.”

Tony Moore, ‘Cry of the Damaged Man’, p. 28

The above quote comes from a book written by a surgeon and rehabilitation specialist who is sharing his experiences as a patient recovering from a car accident involving a 30 tonne truck colliding with his vehicle. He tells his story from a patient’s point of view but with a doctor’s knowledge and experience of the hospital and medical system.

It touches on something a well-meaning friend of mine said in the heat of an argument some months ago. She had said, “I want the old Cindy back.” This sentence rings in my head and wakes me up at night sometimes because it is something so separated from the soul of who I am now to even think about the person I was before Oscar’s diagnosis. I have absolutely no idea who she was. I even went to the trouble of going through my photo’s from before D – Day (diagnosis day) and I can honestly say I have no idea who that person was. That old Cindy is a complete stranger to me and as sweet as it is that my friend misses her I have no such feelings. I just simply do not know who she was and do not have the time, interest or inclination in figuring it out. For me, there is no loss in this – just change itself.

“…in spiritual terms loss isn’t reality, it’s a concept created in the mind. When the mind applies judgement to change, what gets created is loss.” p.223, ‘The Path to Love’, by Deepak Chopra.

The human mind and its ability to judge is an important function that separates us from the beasts and ensures our survival. We all judge because we all think and the thought process is what labels our experiences. No one person is ever immune to this. We all wish to be ‘open minded’ and we all fail at this at times, especially when our life is in crisis.

Who wouldn’t resist the sudden change of their child having cancer? Who wouldn’t feel the need to fight against the loss of their child’s innocence and the childhood you imagined for them full of healthy development and joyful memories? It is natural to resist and you cannot beat yourself up about it. You do the best you can in each moment of now and sometimes you don’t do as good as you hoped, sometimes you do better and all of the time you are trying your best to find your way in the darkness that is a foreign world full of new scary medical jargon, nasty procedures and genuinely life threatening circumstances. No one knows the ‘right’ way to cope and no one knows how it ‘should’ be done. You just stumble through as best you can.

For me, the one thing that I kept focusing on was the idea that love heals. This is a cliché and means different things to different people but it is what helped me to get through the days. It is only the mind that resists change, formulates the concept of loss, tells you that you can or cannot do something. If you instead shift your focus from the head to the heart you find that none of these fears and forms of resistance exist. Instead, love lives in the moment, holds your hand and allows you to sit with ‘what is’.

To heal the ones we love and ourselves we go on a journey into the darkness where only love will provide the answers we are looking for. Reasons fail. There is no reason that any child should suffer the way so many do before they have had any time to enjoy life. There is no reasonable way to respond. There is no rule book on how one ‘should’ respond to circumstances that are so confronting to our every perception of life as we have previously known it. The only answer that makes any sense is: love.

So, I may not recognise the Cindy that existed before D-day but I do not care. Perhaps she had a lot of qualities that I ‘should’ miss. But I don’t. I love this Cindy because she doesn’t give her power away as much as she used to and she understands that her power resides only and always in love.

 Take care beautiful people and remember when you are resisting the changes of your life you are merely judging yourself and it will pass. Love awaits at the end of every tunnel of failed logic. Love will always find its way back to open you up and accept yourself and your circumstances. Love will be waiting for you when your ego surrenders to the truth of wherever you are today.

p.s. Our hospital visit went well today. Oscar’s bloods are coming back up slowly, though the platelets need to catch up. We will be back there again next Thursday to make sure the platelets have returned to the normal range. x

Labour of Love - A Mothers Day Tribute

All mothers know the tasks that mount around them. The washing, cleaning, feeding and organising combined with the consoling, negotiating, teaching, guiding and disciplining of little human lives. In the early days this is a 24/7 job with many, many months of sleep deprivation as mums are on call day and night to feed, change and soothe. This is a labour that can only be explained by love when you consider the enormity of the task at hand – in what other circumstances would a sane person agree to go without a full night’s sleep for months and sometimes years?

This is what mothers do and when your child has some special need those early days of extreme care extend out for longer and longer and, in some cases, never end. I recently read an article about a mother of a child with a severe disability. She described having had three nervous breakdowns through the sheer lack of sleep that her daughters care required. Remember those months of night feeds, nappy changes, inconsolable cries that pierced straight through you and had you marching to the orders of some random and mysterious forces beyond your control? For some mothers with children who have special needs there is no end in sight for that ‘phase’ and it is a monument to love itself that any woman has managed to live life in this permanent haze of service to their children’s needs. And yet many have for many, many generations.

My Nan did. Oh, if only I could talk to her now and ask her how she did it. She had five children to raise, one of whom was disabled due to a lack of oxygen at birth. I don’t know the day to day reality of her life when her children were young but I have heard she carried Graham on her back for the first four years of his life just to be able to have her hands free to attend to the other children and household tasks. She had no car and walked to the shop each day for groceries – not a short walk and up hill on the way home. I used to do that walk with her and whinge the whole way some days. Today when I drive past that Street and think of Nan I marvel at her sheer determination. Is there anything more powerful and stubborn than a mothers love? I doubt it.

Many years later when my Nan is no longer here to share her stories I find myself with a child who has special medical needs. The journey has been full of challenges. I think of the months and months I had to wake every hour to check his temperature, change his nappy, strip the bed and wipe away the excess wee (the medication would make him wee through a nappy in an hour) and more often than not the vomit. No matter how I managed his medication he still vomited, he still urinated excessively,  he still needed me on an hourly basis and we still ended up in hospital. Months stretched out around me in a fog and at times along the way I became him and he became an extension of my ability to keep him here. And I became a mother who is perpetually exhausted, worried, beside herself and broken in half by the guilt and worry of whether I could do a good enough job to get him through this journey that his DNA and blood cells have sent us all on.

Today that care is less but still we wake him each night and give him chemo, we change his nappy and yet still he wakes early having wee’d through the three nappies I have put on him in. And still he wakes early and I have to strip the bed, wash the bedlinnen and his pjs, dress him in fresh pjs and try to conjole him and his brother (whom he has woken) back to sleep.

And yet, this is what we do, for love. This is the work of motherhood. Sure the wages suck but is there anything you wouldn’t do to see your child survive and hopefully one day thrive or at least be the very best that they can be given the cards that life deals us and them along the way?

One day I look forward to burning his mattress and the layers of medication, urine and vomit that it has come to represent in my mind. One day we won’t have to give him chemo. And maybe one day in the very far off future we won’t have to go to hospital to check his blood. We are one of the lucky ones (though nothing is guaranteed).

The truth is, even if I had to do it for the rest of my life, I would, as many mothers do. I take my hat off to them because it is just exhausting and soul destroying work at times. But a mother’s soul is gladly given up for the love of seeing her child grow or develop into the potential that only a mother truly sees.

The truth is, if I had to do it the rest of my life I might have a nervous breakdown or two myself and there are many, many days when I just want to run back to the predictability of working and put the boys in full time child care. Ah, to have a ‘To Do List’ that is achievable, ticked off and completed at the end of the day – not to mention a pay packet and a sense of self esteem.

But that is not my journey and that is not the journey of many much braver and more compassionate mothers than I. These women are silently struggling for a brighter future for their children no matter what it takes and they are a source of endless inspiration to me.

This Mothers Day I will be thinking of my Nan and all the mum’s who continue to selflessly give themselves over to the exhausting job of caring for their children no matter what.

Stay strong and take time out to remember that you are worthwhile despite the invisible jobs that you tirelessly do. Every moment we get with our children is precious and the labour of love is rewarded by the richness of their personalities, their smiles, their laughter and their simple and joyful presence in our daily lives.

Love is all there is. x

All in all....Oscar's update

In the last five days I have had the pleasure for the first time in many months of Oscar just 'being', without any virus impacting on his precious little personality. It was great to get a glimpse of who he is underneath the endless stream of head colds and virus's and the medication cycle that is his 'normal'. He is such a chatter box and an absolute delight.

So it came as no surprise that his bloods are now very low. This is because we increased the chemo at a time when his bloods were showing high due to the constant impact of virus's in his system. Its hard for the Dr's to know that its a virus when it goes on for so many months and they worry that they aren't giving him enough chemo to do the most important job of killing off any dormant leukemic blood cells. So we increased the chemo to be cautious and now his bloods are crashing down and he is neutropenic.
We will decrease the chemo but his bloods will continue to fall for the next week or two and we have to keep a careful eye on him in case he gets a temperature as he has nothing to fight it off. At the moment his neutrophils are 0.5 and may drop to zero and his white cells are 1.4 and may also drop close to zero in which case it may be a trip to hospital for a few days. The platelets are doing well at the moment at 203 but they always follow the white blood cells so they will drop too in the next fortnight.
All in all, all is well. This is just part of the journey and we know what to do to take care of him. In the mean time it is tempting to consider taking him out of preschool for a few weeks to protect him, although Auden brings everything home anyway. Food for thought over the weekend.
I know I keep promising photo's but life keeps bumbling along around me at such a pace I never get more than a few things on my 'to do' list completed. Some day it will happen...
Thanks for checking in on us. Dr Margaret is away for whole month and we will miss her lots but she will be back in time for the big day and will perform Oscar's bone marrow biopsy and lumber puncture on 28th June (like anything, this date can change so don't fix it too firmly in your mind but if it does pop into your mind from time to time send it happy vibes for us).
We ran into some old friends, some of whom are doing so much better than when I last saw them I feel humbled at the tremendous strength they have shown to beat the very bad odds they were dealt, and some of whom are not doing so well as the dreaded cancer has returned to ravage their families again. My heart goes out to them and to all families everywhere.

Take care beautiful people and love, love, love one another. x