Detaching from my boy

As a parent and teacher, I am more than aware of the importance of positive attachment between the child and the primary care-giver.  Having worked in both mainstream and specialist settings, I have worked with children who have chronic attachment disorder and for whom, therapeutic intervention is paramount.  Positive attachment is a crucial part of development and for us, separation anxiety has only really cropped up for our children when they were around 8 months old.  This is the classic age for separation anxiety as identified by John Bowlby in his seminal work in the 1950s.  According to Bowlby, specific attachment occurs at around 7 – 9 months when babies identify with a specific attachment figure who they know will provide comfort, protection and security.  When separated from this single attachment figure, babies will become unhappy and scared (separation anxiety) until he/she learns and understands that the adult will come back.  All kids go through this phase and I can remember emulating psychological studies by placing ours in the middle of the room and leaving to see if they cried.  Luckily they did which meant that they had developed a positive attachment.   Myself and Mr Brown patted ourselves on the back, we were doing OK!

I did not think that I would be coming back to attachment theories when my child was 10 years old or questioning a need for separation. For the last 5 months, Felix’s independence has been snatched away from him.  At an age when he should be developing a greater sense of self and identity, he has been thrown into an adult world where he has been unable to make any real decisions for himself.  His choice of play, new friends, social interaction of any kind has been closely monitored and directed, due to the limitations and restrictions of having leukaemia.  This is something that I have been acutely aware of and the reason why, in one of the few weeks he has had a chemo break, he has gone to school.  This wasn’t an easy decision to make, my inner monkeys were having a right old debate about it. One was arguing that he should have some fun because of the rough old-time he has had lately.  The other was stating that he needs independence and time with his friends.  Then another monkey piped up,  you need to detach from him.  That last monkey was right and had highlighted something I hadn’t really wanted to pay attention to.  This was as much about me as it was about him.  I needed to let him go for a bit, loosen the reins, let him start taking risks again.  And so the process of detachment has begun, and boy it’s hard.

Felix is absolutely fine going back to school; in fact he is buzzing to be back. I am so grateful to everyone at the school for how they are supporting him – the kids as well as the staff are doing everything they can to make him feel welcome and at ease. And it’s working.  I, however, am pacing the floors.  Detaching is hard.  Here’s an example:  Felix goes to school for a couple of hours, it is a lovely day, the sun is shining, the dog needs a walk.  As I get all the bits together, I am smiling at how liberating it feels to take the dog for a walk, in the sunshine, on my own.  Off we trot towards the river, a nice and steady walk, wishing the other dog walkers a “good morning” as we pass; I’m almost whistling at how pleasant it is! Then, I lose the moment and I start to think.  I had been walking for 20 minutes, if the school phoned now it would take me 20 minutes to get home and another 10 minutes to get to school to collect him and then obviously take him to hospital … panic set in with a passion.  That was it, I turned back and hurried home, checking my phone every two minutes until I was safely ensconced back on the sofa until it was time to collect him.  I breathed a sigh of relief.  This is just one example, but there is a general theme when he is at school, that I am finding it hard to let go.  I haven’t quite got the nerve to get my roots done just in case I get called and I’ve got bleach on my hair.  I can’t even bring myself to go to the beach for an hour because of the 2 miles distance.

I know it’s ridiculous and I know that when he is not with me he is with an adult and he’s safe. My rational mind knows this but I still have hospitals, urgency and life-saving treatment at the forefront of my mind.  It is this I need to address, I need to challenge and change my mind-set.  A visit to the school I teach at this week helped.  It reminded me of who I was before this all happened and gave me a glimmer of hope for the future.  We still have two months of intense treatment before any real separation or detachment can start for real but I’m glad that this break in treatment has encouraged me to recognise these feelings in a subtle way before I have to do it for real.

When we consider the side effects of childhood cancer for the children, siblings and parents, attachment and detachment has  to be considered. These side – effects destabilise features of positive attachment; as a parent I know must provide comfort, protection and security yet in the context of a cancer diagnosis the parameters have changed.  It will soon be time to think about and reset those parameters to enable Felix, myself and the rest of the family to continue to thrive and grow.  I can’t wait!

 

 

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The week that was.

Well, that was quite a week wasn’t it.

On reflection, the emotions played out have been as unpredictable as the British weather.  There have been spells of utter happiness, interludes of stress with a huge front of sadness and disbelief.  In hindsight, I wish I had looked at the emotional forecast at the beginning of the week, as some emotions have hit with such force because we were so unprepared.  The effect of this tumultuous week has left me quite low and downcast on this grey, Sunday afternoon.

The crack of thunder and lightning on Friday was what truly knocked me off my feet.  That thunderous result of the referendum.

I’m not angry, I am just sad.  Sad at the opportunities that might be lost for my children.  Sad at the opportunities that might be lost for others.  Sad that whilst we are still European, our relationship is now different.  I hope that the future will be brighter and that life out of the EU will afford us the freedom that has been promised.  At the moment, all I can feel is utter loss and grief for what has gone and will never be retrieved.  I know that those who are pleased with the result have possibly felt this way for the last 40 years and this is by no means a challenge or attack on those who wanted to exit.  Instead,  I am trying to make sense of the rawness and depth of my emotions.  I feel as though I have been punched in the stomach and have a constant feeling of dread and foreboding.  Gosh, this all sounds dramatic, but it is truly how I feel.  I feel that we have lost opportunities forever with no sense at all of how this chasm in our society will be filled.  I don’t know what to tell my children about what the future might look like; I don’t know anyone who can.

Tomorrow is another day, the start of another week.  The forecast at the moment looks unsettled with periods of sunshine; here’s hoping for a sunnier and brighter one.

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What has the referendum meant to me?

Today is EU referendum day.  At last I hear many people cry.  But what has it meant for me?

One thing for sure is that my children have become more politically aware which is something I am grateful for.  In the past, the complexity of local and general elections have made it difficult for my children to really have an informed opinion.  They have grasped that there are different political parties and that there are MPs who represent them but trying to tease out and enable them to understand similarities and difference between the parties has been difficult.  However, the simplicity of ‘In’ and ‘Out’ has enticed my children to examine the arguments for and against and come up with their own opinions and stance on the issue.  Of my lovely three children whose ages are 7, 10 and 12 we have two who would vote remain and one who would vote out.  I’m extremely proud they have an opinion and thankful that the referendum has made this happen.

Sadly, there is very little else positive I can say about the referendum.  For me, the outcome is almost meaningless, as the divisive nature of the referendum has exposed some deplorable behaviour from some people.  I have questionned their personal morals and ethics, which until the referendum, I have never doubted. I understand that people are passionate about their beliefs, whether it is remain or leave, but the manner in which this is presented by some has been loathsome and ugly.  I more than welcome informed opinion and well-articulated arguments, I have needed these in order to form my own opinion on how to cast my vote.  What has devalued the referendum for me is the brutal, arrogant and superior way some have presented their views.  In every day life, I consider these people to be kind, thoughtful and respectful people who are shining examples of what it means to be a British citizen.  However, the EU debate has been a catalyst for the character of some to change beyond recognition. I hope it is merely a temporary blip ignited by passion. 

I sincerely wish that once our votes are cast, counted and declared we can all return to a less divisive society.  A soceity where we do not judge, ridicule or belittle people because of their views but respect them for their opinion and beliefs.  I know this may seem idealist and naive but throughout this whole process, I have watched my children listen, consider, debate and voice their views about the EU referendum without causing offence or assuming superiority over others.  How are these skills and qualities lost as we become adults?  As I cast my vote today, it is the effect on relationships that will mean the most to me about this referendum.  I truly hope that we recover from this, whatever the outcome is tomorrow morning.

Contemplating Father’s Day…

As Father’s Day comes around again, I know it won’t only be different for us this year but it will be different for many other people as well.  Whilst I used to think it was lovely to celebrate days such as Father’s Day, I now realise that these days can expose a harsh reality for some.

In the past, Father’s Days have involved comedy breakfasts created and delivered by the kids, lots of bundling and love followed by Dad being showered with gifts and cards.  The day then pans out to include time spent with both our Dads which, despite the miles between us, we try our best to see them both.  This year will be different.  Mr Brown will wake up in hospital on Father’s Day with Felix; the rest of us will join them later.  It is unlikely we will get to see our own Dad’s this year.

What has struck me most as Father’s day approaches has been how hard it must be, for other individuals and families, for so many different of reasons.  Only this week we have been saddened to hear that another Dad has passed away and two have been taken seriously ill and hospitalised.  There is also a Dad whose relationship with his family is changing because of dementia  and another who will not wake up in the same space as his children because of divorce.  There are kids who will want to see their Dads but can’t and Dads who can’t see their kids but want to.  There are Dads who have never met their children and sons and daughters who have never met their dads.  Life is much more diverse than the images presented to us during these celebrations days and it seems that it is more complicated for the majority of people.

We are bombarded with the Father’s Day stereotypes.  The cards and gifts adorned with humour relating to golf, beer and football.  The widely advertised CD compilations for Dads to drive or run or rock to.  I know too many families who do not fit into this stereotype and whose Father’s Day will be very different to the ones portrayed in the media.  Their day may well be filled with sadness, regret or disappointment; it is these individuals and families that I will be thinking of this year.

I will be thinking of those who may not have the opportunity to celebrate and spoil their Dad on Sunday for whatever reason. Even in our forties, there are many friends who have already lost their Dads far too soon.  There are Dads who have not had the pleasure to see their grandchildren grow or watch their children become parents.  There are the children and adults who lost their Dad generations ago who will be reminded of their absence on Father’s Day.   Then there are the absent fathers who will not be joined by their children on Sunday or those Dads who, despite fighting, will not get to see their children.  There are families who will be separated by the family dynamic or through illness or distance; families separated through love and trauma.

The notion of Father’s Day is rooted in an ideal of family and relationships.  I have questioned this in a hugely simplistic way as the complexity of family relationships is wide and far-reaching.  What I do know is that in the media, images of Father’s Day do not include Dads who die young or suffer debilitating illnesses or Dads who are estranged from their children for whatever reason.  Instead we see families who are free from limitations and will spend the day together enjoying strong and healthy relationships.  To those who will have this opportunity, enjoy!  We used to enjoy it and not question it at all.  I used to relish it and not really take the time to think of others.  Things change and this year I will be thinking of friends and family who will not be spending the day together with their Dad, for whatever reason, and hoping that they can still find some love and laughter in it all somewhere.

For me, I would like to wish all Dads a lovely Father’s Day and I hope the sun is shining for you.  For ‘Our Dads’ and Mr Brown…we love you dearly and couldn’t have got through all this without you.  Thank you for making us happy and being there for us every step of the way.

And for you Mr Brown, in the wise words of one of your heroes, you’re doing a fab job!

“I cannot think of any need in childhood as strong as the need for a father’s protection.”

Sigmund Freud

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Turning a scary place upside down.

A lovely friend commented this on one of my earlier blogs and it really got me thinking.  Had I really turned the scary thing that is childhood cancer upside down and if so why?

As soon as Felix was diagnosed, it struck me that we and maybe others had preconceived ideas about what childhood leukaemia is and what it would mean for us.  The image I had was of a young child, sat on a hospital bed with a feeding tube, with huge eyes looking sad, lonely and lost.  From the onset this bore no resemblance at all to Felix who, to us, is the epitome of youth, optimism and strength. I could and would not let this change despite the  diagnosis.

Felix’s blog has achieved that, it shows that cancer has not changed him.  He still loves football, he still likes to look good and enjoys the company of others.  Yes, there are bad days, but don’t we all have bad days?  No matter what though, he still has his sense of humour, a sense of rebellion and his infectious smile.  He doesn’t want sympathy and he definitely doesn’t want people worrying, this does upset him.  His brother asked him the other day what it felt like to have cancer, Felix replied “it’s just normal”.  What is there to fear and sympathise about that?

I’ve always supported the view that knowledge is power.  If I could share my new found knowledge and understanding of what it is like to have a child with cancer, then this information could bring about change.  As Kofi Annan argues, “Knowledge is power.  Information is liberating.  Education is the premise of progress, in every society, in every family.”  Writing this blog is liberating for me, as it unshackles me from the torment of emotions and feelings that my son’s cancer has created.  I also know that this peek inside a home with childhood cancer has invited others to question their opinions, views and beliefs about childhood cancer.  The beautiful comments I receive and honest conversations I have are a direct response to our reality, not a media contrived representation or image.  We are all challenging the assumptions we had and turning them on their heads.

Yes, a world with childhood cancer is a scary place but by dispelling and challenging the preconceived ideas we have, we can define the nature of the relationship with leukaemia.  Whilst cancer is living with us at the moment, we will not let it unnecessarily confine or limit us.  It is up to us to define what it is to have and live with childhood cancer.  And if that means turning this scary place upside down, we’ll enjoy every minute!


Home is safe. Home is secure. Home is love.

Last week in hospital Felix broke his heart.  He wasn’t crying because he couldn’t go to school or play football or that he was in pain.  He was crying because he had been told that his levels were still too high, he couldn’t go home.  All he wanted in the world was to be at home, something we all take for granted, to be with his family.  This is one of the hardest parts of watching Felix being treated for cancer, knowing that he and I have absolutely no control over what happens and that I often have to be complicit in taking his control away.

When Felix is in hospital he has no control over anything.  Even as basic as his bodily functions.  These are dictated by the medication and IV hydration and other people’s demands, it is not on how much he eats or drinks. He is told regularly by me, that he should be drinking as much as he can, even though he is not thirsty.  He is told when to eat depending on the medication he is taking.  On occasions, he has to pee on request, like he is a robot undergoing testing.  He is constantly being told what to do and these actions are closely monitored.

A time I remember vividly was when he was having bloods taken.  He had been in hospital a while; he was tired and fed up, he didn’t have the answer to the only question he had, “when am I going home?”.  There were a number of medical staff for the procedure and he was being told to sit up, sit back, roll over, put your arm up, put your arm down, it was heartbreaking.  Within minutes of this he was then directed for go for a wee.  My heart went out to him, I saw this vague look of destitution in his eyes, a look to me for help but I could do nothing.  When you know that your son is receiving life saving treatment, you have to let them do what is best.  He looked broken.

When Felix broke his heart last week, each time he was told he still couldn’t go home, I had to find something positive from it.  That is, he is still fighting, he still has passion and he still feels life.  It would be easy for him to surrender and allow apathy to take root but he doesn’t.  I am so very proud of him for this.  So when he refuses to eat the hospital food I condone it because I know that this is one of the few things he has control over, so off I trot to Marks and Spencer for whatever he fancies that day.  When he flicks me with water each time he wees in the cardboard urinal, I always laugh because I know he is displaying his total frustration and lack of control.  When he asks the nurses to wait before taking blood or putting up his chemo, again, I understand it is all about control.

It is known that lack of control leads to fear.  When we feel as though we have no power or say so over what is going on, it can make us feel vulnerable and exposed.  This is how Felix feels for the majority of time he is an inpatient.  The team around him do all they can to empower and distract him but the nature of the treatment means that a lot of things just have to be done and cannot be avoided.  He is powerless.  I am powerless.

As they say, home is where the heart is for Felix right now.  Home is where he has an element of control.  He can eat when he wants, go to the toilet when he wants, go to bed when he wants.  He can be himself, with people he loves and who love him.  Home is safe.  Home is secure.  Home is love.

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Happy Anniversary Mr Brown

“For better, for worse, for richer, for poorer, in sickness and health, until death do us part”… This was all far too traditional for us 14 years ago so we made our own vows up as many people do now. I think the idea was to make it more personal to us, to let the real Mr & Mrs Brown shine through. The funny thing is that I have no idea what our vows were, I don’t even think we have a copy anywhere. What I do know was that we wanted our marriage to be rooted in love, equality and respect.

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As is our general approach to life, we ‘winged’ the whole wedding thing. We wanted a minimal fuss, maximum fun wedding.  We didn’t want to get sucked into the commercialism  that can come with weddings and whilst the wedding was important, the act of getting married itself was what mattered. My wedding dress was from the sale rail of a local shop and a friend kindly adjusted it from a size 14 to a size 8 (those were the days!).  The chicken fillet bra was from Marks and Spencer’s and my wedding shoes were £10 from Mark One.  The bridesmaid’s dresses were reduced from House of Fraser and by the time we had used the discount from the store card and Mum had returned them as they were reduced further in the January sales, they were about £15 each!  Mr Brown bought his wedding suit from Carnaby Street, as was his dream, and accessorised it in Burton.  Boy we had class!  There were no wedding cars, instead we used my father-in-law’s Jeep, Mr Brown went in his own car and the close wedding party and bridesmaids hitched a lift with our friends. Our photography teacher friend took the photos, our electrician friend did the catering and Mr Brown’s band spontaneously entertained the guests in the evening.  We lovingly made our invitations, table decorations and favours; pebbles with guest’s names and personalised sticks of rock. It was totally us, the new Mr and Mrs Brown.

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As with most things we do, we didn’t really think things through. The last week of May that year was a wash out; rain, storms, wind, typical British weather.  Our evening celebrations were on a tourist boat around Poole harbour.  As the day drew closer, we realised that the day could be an absolute wash – out.  Our only option would be to hold the evening reception in one of the pubs on the harbour; that would be fine, we’ll wing it!  Luckily we didn’t have to as 1st June 2002, the day before the first England match of the World Cup, was a scorcher.  We also winged it in terms of timing.  Traditionally, the bride is late as we know.  As the Jeep got closer to the wedding venue, we started to think about time.  Our wedding was at 1:00pm, we didn’t want to be too early or too late, just on time would be good for me.  Well, that was easier said than done as we didn’t have a watch between us.  The Jeep didn’t have a clock and mobiles weren’t really much back then.  So, we drove to a local village, stopped and asked three people the time, not one of them could help us.  So we winged it, again!  Luckily, we judged it right and we only prompted a few guests to leg it inside as they saw us approach.
Our wedding day was just what we had hoped for. All of our lovely family and friends, a beautiful hot day and plenty of fun and laughter.  It only seems like yesterday.  Over the last 14 years, we have experienced the usual common stresses which can test any solid relationship.  The change in dynamic when your first child comes along, and then your second and third and then a dog! As the years have passed, we have grown and developed as individuals from our exuberant enthusiasm in our 20s, the changing existence of our 30s to the philosophical and content nature of our 40s; our relationship has had to grow with us.  Our marriage is by no means perfect; we irritate each other as much as the next couple, power struggles continue and our interests and hobbies seem to widen.  Yet we can contend these differences as we recognise and embrace them.  We are not the youthful and energetic twentysomethings that got married on that hot day in June 2002.  We are now 40 plus with three children, a dog and sizeable mortgage.


When Felix was first diagnosed, there was concern from others about how this might affect our marriage. People were worried about the impact of something as serious as this on us and how we would cope.  We knew it would place additional strain on our relationship as we both tried our hardest to hold Team Brown together.  However, I think that through our respect for each other and the acknowledgement of how tough it is at times, our marriage is stronger than ever. For the first time, we are paddling in the same stormy waters and we have to protect and watch out for each other.  We have closed ranks and created a wall of protection around each other, wary our fragility. It means we both understand how the other might be feeling and the ache and the rawness of that emotion.  We can and do fully empathise with each other. And so, if Mr Brown is engrossed in his gaming I let him be, as he does when I am up late writing as we know why we are doing it.  If we fly off the handle or snap at each other, it is easy to trace the catalyst. We know and understand each other’s nuances and peculiarities enough that things do not need explaining, discussing or debating.  Occasionally we’ll check in with each other and confirm “we’re doing OK aren’t we” both of us fearful of the future, desperate for each other’s reassurance. To date, we do reassure each other, that yes, we’re doing OK, we’ll get through this.  For that I am grateful.  Whatever those wedding vows were, they seem to be doing their job.

And so Mr Brown ~ Happy Anniversary ~ I love you xxx

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