Saying goodbye

It’s a month since we lost him. It’s not the same as losing a child in a busy shopping centre or even a pet who wanders off. Forget the agony of the McCanns, always searching for Madeline or the posters on lamp posts for “Jake:missing 2 years”. In this case ‘lost’ is permanent. And it’s not as if we made an error and mislaid him – it’s more that he up and left us: he’s GONE.

‘Loss’ and ‘gone’ is what it feels like. People talk about ‘passing over’ or ‘passing away’- trying to come to come to terms with the utter impossibility that all that LIFE and intelligence and experience and SPIRIT seem to have dissolved into NOTHING. He’s gone ‘somewhere else’, they say, ‘to a better place’ – ‘he’s looking down on us from heaven’. ‘He’s happy now, he’s at rest’.  But to be honest, at first those words simply don’t help that much… Even if we have signed up to faith, we can’t really be sure what it means. Our daughter asserts that the philosophy she studied insists that body and soul are so interlinked that once the container fails there is nowhere for the soul to go – hence the appeal to ‘save our souls’. It can actually feel like that, despite all we believe about the spiritual realm.

I know St Paul’s declaration – that the dead in Christ have simply ‘fallen asleep’ – but it is better not to use euphemisms. No, we prefer to face it head on: Sam died on 25th November and he is dead and buried. Sam as we knew him has left the building, left our family, left a hole that will never be filled. His cold body  – the one I birthed, nurtured and hugged – is in the earth now and will never smile, speak or argue his point again. He was my only son and I loved him as only a mother can. He was my burden and I carried him. He turned blue, then white and waxen. It was horror and utter sadness.

The emotions are very mixed… part relief at the end of a very long journey, mostly grief that hits in ways you had never imagined.  Yes, I do trust that his essence lives on – “today you will be with me in Paradise”- but that realm is beyond us, unreachable, and in our worst moments a fairy tale. In my better moments it comes to me in a rush of certainty: “Sam is NOT dead! Jesus went to His Father and ours!” When I choose to trust Jesus’ words I have hope – hope of resurrection, hope of being reunited, hope for grace and mercy for my son and for ourselves. Those who find that leap too difficult may suffer more, I suppose – but how can heartbreak be measured?

Saying goodbye

How did it come to this?

Throughout 2014, the young man who defied death for 5 years continued to wake up every morning in his little house with his beloved cats, but some days he didn’t feel like getting up, let alone dressed. He continued to fight the inner battles and feed himself – a minimal amount; he lost weight and looked pale. His independence was too precious, his ego too strong to allow his parents to get very involved: what 27 year old male wants their mother sniffing around? He had faithful friends who suited his smoking, metal, XBox lifestyle and they visited him most afternoons. He had a very close internet friend in Louisiana and his mentor/healer Dean on the phone: he spoke to both of them every day. He continued to ‘study’ projects that were going to make him an internet millionaire while unemployment benefit paid (some of) the bills. It gave him some sense of purpose even though the family never believed the great plans would come to anything. The right brain carries executive function – with his great disadvantage in that area there was always a wall, he would always fall back and a few weeks later the whole process of “what’s the point and what am I now living FOR?” angst would start again…

So we don’t know how long the tumour had been regrowing in his right brain – especially as he had refused all scans for about 3 years! All we know is he seemed relatively well, reasonably happy most of the time, and denied any symptoms other than a bit of a headache sometimes – and he had his own remedies for that.  He had ‘beaten it’, he was ‘healed’, he was ‘post-cancer’ – though still damaged by the blight on his youth, which was made even more tragic because he should have been a bona fide genius in some field or other.

There is no doubt the mental effort required to keep facing down a terminal illness and remain positive was exhausting in itself. Fatigue is always a side-effect of mental illness. Sam always refused anti-depressants, though he did have a weekly appointment with a counsellor I found, so he could just talk: that took some pressure off me too. But his main approach to his diagnosis was self-help: to meditate, deal with inner turmoil, address issues that arose – usually to do with relationships – online or past or ‘people’ who couldn’t relate to him or understand him. He felt very let down by these ‘people’ he could never name –  quite paranoid really. He couldn’t empathise with others’ feelings because of his tumour, but he was often right in his criticisms of ‘so-called’ friends who didn’t make any effort with him. But boy, was he difficult – as his facebook friends often found out when he had one of his ‘rants’. His use of language was so brilliant you really didn’t want to be on the receiving end of his wrath! These were often times I got called on to ‘listen’ – even though that was hard at times, I know I was privileged that we were close. He was also really lovely to me and I have many precious moments to remember – as do his close friends. Once you got past the bitterness he was loyal and big-hearted – and he did forgive all those who had hurt him before the end.

About a month before he died the headache and fatigue grew worse but he put it down to a stomach bug that was going round and lay around on his sofa all day… not much change there then!  I didn’t realise he wasn’t eating or drinking enough, but when I popped in just before making a trip down to Devon for my father’s 86th birthday on 13th November, I thought it would be wise to call the GP for a home visit. She didn’t seem unduly concerned – according to Sam! – but told him he probably ought to arrange another brain scan at some point and should rest.

15th November, Sam’s sister went to visit him: his dad and I were still both out of town. She was so shocked by his state she dialled 999! And so it began… Although we cancelled the ambulance, realising hospital would not be the best place for him until it became essential, and spent the weekend as a foursome in his house – which he loved! we were all together as a family, visiting him! – we gradually realised that Sam’s vision and memory were actually a lot worse.  Computer kid couldn’t remember his password to get online – totally unheard of – and he was obviously physically very weak, especially on his left side. I did what mothers always do and fed him up with 3 meals a day, while we watched ‘Lord of the Rings’ together – as we always did. He remained in denial.

On the Monday 17th, just after Becca had caught her train home to Brighton, Sam was very sick and his headache obviously worse: I knew it was time to act. On phoning the surgery the doctor on call quickly contacted the hospital and arranged an emergency scan and admission. This time we chose to go to Leicester instead of Nottingham – Martin’s work environment and much more convenient – and by the evening the patient was in a bed in the Leicester Royal Infirmary and Martin’s family on their way up from Sussex with Rebecca, who’d only been home a matter of hours!

I won’t go into all the details of the next 9 days… Suffice to say it was a roller-coaster of emotion: severe In the hospital beddeterioration, fits and incontinence, appalling scan results, family tears, putting in a drip and starting steroid treatment, family cuddles followed the next day by some improvement in consciousness, night-long hiccups, debate, anger and demands for discharge… Then on Wednesday afternoon discharge home, and on Thursday morning forcing himself out of (borrowed, downstairs, hospital) bed against all odds to prove he could still look after himself and then shocking us all by walking alone to the CINEMA. He went again on Friday and Saturday, old friends came to visit on Sunday andheadache various others had long talks on the phone – while Sam continued to deny there was any problem and sent his parents away for ‘fussing’ – but was still unable to get online or even remember his phone number. Perhaps part of him knew what was happening – to our relief he was willing to have nightly nursing cover ‘just in case’ so we could go home to bed. Despite a long talk with the family doctor he was now refusing ANY steroids so we knew it wouldn’t be long… until there was a final night watching a movie with Dad, a final morning when Mum had to call the ‘Hospice at Home’ nurse, a final emergency journey up from the south to find her brother already unconscious… a houseful of family and a faithful lodger eating sandwiches, a cat on his bed, the slipping away of life, breath, heartbeat…

Goodbye, Sam son. We’re so proud of who you were – your courage and determination, your big heart and amazing – flawed – brain. Thanks for everything you meant to us. Into God’s hands we commit your extraordinary spirit.

Goodbye

Posted in Personal, Sam's journey, Suffering | 21 Comments

The snare has been broken

Sally Ann:

July 2014: we are in yet another season. The Haitian experience is behind us and my hair has grown back salt-&-pepper grey. Above all, Sam remains well in his house in Loughborough. But we have (partly) relocated to the city – for the next step on the journey…

Originally posted on Longing to escape...:

“We have escaped like a bird from the fowler’s snare; the snare has been broken, and we have escaped”. Psalm 124v7

freedom

Escape… it’s what this blog has been about. I started it at a point of deep frustration, trapped by circumstances with no possible exit. I was thrashing about emotionally, looking for ways to cope, ways to accept the boundaries that having a son with a brain tumour put on us. We had to ‘stay put’ in our too-large family home in order to be near him. A shadow lay over the future and planning seemed impossible. In addition my husband’s working hours left us little time together: I was lonely and at a loose end.

Having never had a career I’ve been trying to re-invent myself for the past few years, desperate to find a new lease of life like so many of my friends seem to have done…

View original 577 more words

Posted in Something to say | Leave a comment

Not a pretty sight

Sally Ann:

It’s funny how all the threads of my journey come together again in this sponsored ‘headshave for Haiti’ project. 2 weeks on I am grappling with identity issues that hark back a long way…

Originally posted on Headshave for Haiti:

It’s almost 2 weeks since my head was shaved and I haven’t been able to write anything about it until now. In fact, it struck me this morning that I first used the name “Redhead” to hide my true identity when publishing the story about my mother’s death on-line in 2009 (you can read ‘Byllie’ here) before it went on to find permanence as my nom de plume on a poetry site set up in the Spring of 2013 with fellow wordsmith Ray (find Ray & Redhead here). So it’s not really surprising that giving up the RED has had an effect on my writing!

However, there is a lot more to it than that and it’s taken me a while to process – wordless reactions, unforeseen emotions, unknown territory. At last today the computer screen takes it’s old, familiar place once more as a friend who’ll sit…

View original 999 more words

Posted in Something to say | 1 Comment

Tonight’s the night!

Sally Ann:

Update! The BIG DAY is here:

Originally posted on Headshave for Haiti:

It’s midday on Saturday 5th October – a long awaited day. Martin is playing Haitian music while trawling the internet for clips about the island. He has found some real shockers… :-( I’ll put them up on the Haiti page soon, when I can face it, but it’s one step at a time on this journey and I already have enough to cope with for today.

In stark contrast to the sad and terrible stories of injustice and pain, the island music is full of joy and life. Perhaps that just serves to underline all that has been lost but it also gives hope of what can be recovered: we’ll play some this evening for those who pop in for the hour to watch me ‘lose my head’!

Tonight’s the night  – it’s gonna be alright?!) For some reason I have Rod Stewart going round my brain! ‘cos I…

View original 758 more words

Posted in Something to say | Leave a comment

Suffer the little children

I found out today – through the wonders of the facebook newsfeed – that not one but two young men I knew as children got married this Saturday.  They are both several years younger than Sam and although of course it is lovely for them and their friends and families and I wish them nothing but blessings and happiness, the news has hit me hard. I feel both shocked and sad!  That doesn’t seem very appropriate, does it? I must be getting old when I can’t even believe they could have reached the age to be allowed to marry! Having not seen them for years it is hard to picture – I am still living with memories of them at age 9, passing on Sam’s old clothes and playing family board games and football. Come to think of it, I even remember when they were both born: time is obviously moving faster than I think.

The first lad, Matthew, I had actually heard about: he’d got engaged to his university sweetheart about a year ago. He’s the only son of my oldest friend, a widow who died of breast cancer a few years back, so of course I am delighted for him, finding happiness, love and a new home and family. The photos he’s posted are beautiful: he looks just like his mother. I remember a school concert in that same venue when we sat on the grass to listen to him play with his proud mother and some of her family… come to think of it a number of them are also now dead.  Perhaps I’m feeling sad that we weren’t invited back there – but he wasn’t my friend, she was, and I haven’t kept in contact with him since her funeral except for the occasional fb comment, so why should he invite us to the party? We all go in different directions in life and priorities change: it is always time for a new generation to move on. Anyway, get real! I don’t even like weddings!

Screen shot 2013-09-10 at 11.02.45

But then, the second young man really did come as a surprise, right out of the blue! How can that little scoundrel ‘Jarvis’ possibly be old enough to wed? It was strange enough when his brother got hitched last year and he’s about 5 years older. Surely they are all still children? And why is it fair that my old friends have all 3 of their children blissfully married and my own 2 are still alone?

Ah – we come to the nub of it. I wonder if this is why I don’t like weddings?

For years I have been saying I don’t care that my kids aren’t hitched and I don’t want grandchildren, thank you, we’re quite happy to have a breather for some considerable time. But have I been deceiving myself, perhaps? I don’t think so… I really don’t have any great desire to be ‘the mother of the bride’ nor am I broody for a new addition to this crazy family – which is a good thing because at this present time it is unlikely that I ever will be! There are zero prospective partners in sight for either of them, and even if there were, they certainly wouldn’t be doing the traditional marriage thing.

I am sure I have accepted that. Really. I am not yearning for some fairy tale ending – and I truly am glad for my friends and their sons. And contrary to what one of my neighbours thought the other day, I am very glad Sam didn’t marry Jessica in the end too…  It would have been a nightmare. Better not to marry than marry the wrong person!

No – this surely comes back again to simply wanting your kids to be happy… It’s about being really weary of the long journey, the struggles of the years, the continued legacy of what they’ve both been through and still feeling trapped by our situation. When will redemption come – how long, O Lord? When will there be good news for my kids – love, happiness and a future?

Now that too is silly. Becca has moved into a new flat, is doing well in her part-time management job, has taken up skate-boarding(!) and has a part-share in a sailing boat on the sea at Brighton: she is no longer in the grip of depression and is even having fun. And Sam himself really does remain well. He is just a bit stuck… stuck, stuck, stuck – as always, existing month to month, up and down, with his 2 cats in his little house in Loughborough, scraping by on benefits, still full of great plans to set up businesses that never come to anything – well not yet anyway. Longing to escape, but he doesn’t even know where or what to.  But it could all be so much worse! And we are grateful for all of this, for having made it this far – for all we have. Really.

I suppose it all depends who you are comparing your situation with, doesn’t it? There is so much suffering in the world and always those who are worse off… it’s no good getting bitter over someone else’s good fortune. My children are not the same as other children – different gifts, different destinies. I have to keep coming back to what Jesus said, “Don’t worry about him, you follow Me” John 21v22

Jesus said this other thing, too: “Suffer the little children” Mark 10v14. It doesn’t mean that, it means let or allow the little children to come to Me, suffer is a pretty old fashioned way of saying that – the King James translation of course, the one I memorised as a girl. But even so, the little children do suffer don’t they? As in the modern meaning of the word – they go through stuff, painful stuff, bad stuff.  Just look around the world and see it, watch Comic Relief or the news… how can I possibly complain about our lot (in both senses of the word)?

SO – how to respond to all this? WELL – we are going to deliberately focus on some suffering children for a while, to take our minds off our minuscule problems and get some perspective. Yes – it’s true. For some years my husband Martin has had an inner pull to go over and help in Haiti – the poorest country in the western hemisphere with the most AIDS orphans per head of population and an atrocious infant mortality rate.  This sense of call happened way before the 2010 earthquake and before Sam got ill… So my news is that finally this November we are both going there for 2 weeks as part of a reconciliation expedition and to have a look and see what that might entail for our future.

Rather an extreme reaction, you might say… maybe even a bridge too far. But when did we ever do things by halves?

Photo of poster

Please follow this journey on my other blog and please consider sponsoring my fundraising headshave – which is a big personal sacrifice for old Redhead to make.

Yes, it turns out I will be wearing a hat after all – but not to a family wedding.

Posted in Mothering, Something to say, Suffering | 7 Comments

Post Script

In the aftermath of coming to the end of the life of this blog, I have been resting, praying and feeling my way forward. After a l-o-n-g winter, early spring is now on the doorstep, so this is simply a short PS to round things off for those who may visit this page. The wonder is, there are still visitors – some perhaps new to Sam’s story and others in search of any still relevant reading material from the archives – which is most gratifying after all my hours of typing over the months since September 2010! Simply click on any of the pages or any of the categories and see where it takes you…

I do still intend to use a lot of the family material to compile a book: “Sam son: living with a terminal diagnosis” or “Learning to die and life before death” – or something ;-) But I don’t know when that might happen… Sam’s story is far from over but I feel it is now his story to tell, rather than mine. Meanwhile I have my own story, as a mum and as a writer – the agonies of letting go and the rediscovery of my own identity and gifts. As I read today: “children are their parents’ guests… not their property. In many ways children are strangers. Parents have to come to know them, discover their strengths and their weaknesses, and guide them to maturity, allowing them to make their own decisions.”  Henri Nouwen, Bread for the Journey, p81.

Anyway, since December there has been little I can report on Sam: the new girlfriend didn’t last, but so far his good health has. He is symptom-free and awaiting a scan in a month or so – just to ‘have a look’… hmmm. It may not be a good idea, but after a year of guessing it has to be done. The daily mental pressure of having been given a death sentence continues: we are more than proud of how well he has handled this, becoming his own man in the face of such adversity at such a young age. He puts his recovery down to Dean’s acupuncture and healing abilities – even more than any benefits from taking high-dose cannabis – while we praise God and are grateful for any way He has used Dean’s commitment and friendship or even drugs or diet: the Lord is obviously answering many continued faithful prayers.

We still don’t take any of it for granted – wow what a ride! we have all learned so much and there has been so much healing! – yet we still live with loss, sadness and things not being what they ‘should have’ been.  The future remains uncertain – but then so does everyone’s! Sam is still proposing to start an internet business in marketing and is buying and studying on-line courses constantly with that in mind. Whether it will ever actually happen is another matter, but it gives him hope for the future, so we pray and trust for provision and for the way to be made clear as we go – just as it has been through the ups and downs so far.

Father and son - now buddies as well: March 2013.

March 2013: father and son are now buddies as well

I am now going to diversify my blogging. I have gained great pleasure from posting daily photos on A Lover of the Light this winter and that will continue. I am aiming to restart Longing to Escape with a piece for Mothers’ Day: 4 months exactly after calling it a wrap, that blog – unlike this – seems to be getting a new lease of life: the stories are demanding a language of words as well as pictures, so they can find readers out there – in the public place.

In addition, I want to start a new blog specifically for poetry, to develop the creative side of being a wordsmith and host a space for other aspiring poets: (a week later and here’s the link to Ray and Redhead ;-) Meanwhile, any specific teaching on Scripture, prayer and passing on of my spiritual experience will be posted on The Bees Knees, which is aimed at Open Heaven-ers, younger Christians and anyone else who is interested!

If in 2013 I can get into a rhythm of writing again – out of enjoyment and rest rather than obligation or pressure – I know I can be fruitful in many directions: that, of course, is why this blog had to be cut back… but it now feels as if Spring is in the air again :-)

Couldn’t have done any of this without your support – all you friends and visitors – 31,000+ hits. What can I say but a massive THANKS – and if it seems good to you, follow me where I am headed now!

Signing off – Sally Ann xx

Posted in Amazing!, Life choices, Personal, Quotable quotes, Sam's journey, Writing about writing! | 2 Comments

Sudden death

Two weeks ago the Daily Mail published our family’s story for the second time, as part of the media response to the legal battle between the parents of Neon Roberts over their son’s treatment. We’d waited a week since this was first suggested, riding the adrenaline rush of getting everything updated for the next day’s paper – which at least one friend went out and bought in a gracious gesture of support, before discovering we’d been left out of that edition – followed by another 6 days of not knowing if or even when it would actually happen. There was plenty of time for us to reconsider, waver and become anxious and plenty of opportunity to feel like victims of the tabloid media – yet knowing we could only blame ourselves for agreeing to it. The reporter would phone to apologise again and I would again be understanding… of course newspapers have their own ways of working and once the story was submitted neither of us were in control.  When it did actually happen it seemed quite unreal, taking me back in time to the forgotten days of struggle and anguish, to a time we currently have no grace and strength for… painful and raw.

Daily Mail

Why oh why had we done this again? Well, mainly because they had promised some much-needed dosh in return – a great incentive indeed, just before Christmas! – and also because Sam was all for it, very happy to be considered an expert in the field of brain tumours, feeling he has something worthwhile to say in the debate raging around the little boy’s treatment: anyway, who isn’t pleased to be famous for another 15 minutes?

As it turns out – me! The story was, as before, focussed around the difference of approach between father and son, but thanks to more room made for photographs this time – particularly in the on-line version -Sam’s mother featured a lot more. I now took my place in the story, the third member of the so-called ‘parents v. son’ trinity – while Becca, who is wiser than I, was deliberately side-lined at her request… apart from being mentioned in passing and pictured as the little sister so that Sam doesn’t seem to be an only child on top of everything else!  The newspaper feature only had one moving picture of mother and son (above), but the on-line version had very many of my old family photos, illustrations from my blog that I’d gladly shared with the friendly reporter 20 months ago, but which were now being broadcast far more widely – and with someone else’s agenda. It felt very strange… but the right to do that is what they pay for!

The blatant errors made me cross – especially the suggestion that Sam was refusing further radiotherapy… Yes, we know he ‘blames’ us for making him have even the one course of chemo-radiotherapy he endured – being inoperable it was  the only thing that could be offered for his tumour. But despite his resistance he did eventually agree to have it as the lesser of 2 evils and no-one can have more than one course of radium to the brain, precisely because of the side-effects Neon’s mother dreads. To make it look worse it was implied that he’s refusing proven means to use unproven ones… someone even commented he really should be sensible and allow the surgeons to operate, having missed the point that in his case they can’t! The only conventional treatment Sam has refused is an extended course of temozolomide which made him feel ill: he has instead tried everything else he can get his hands on, hoping against hope that something will work.  All credit to him – and at the moment he remains very well, praise God!

I was in danger of going down the Grrrrr! route again so I put away my copy of the paper and stopped reading the online comments; I just had to accept that this was the way we were being portrayed for editorial reasons and wait for the opinionated and non-sensical reactions to pass. Sam just laughed at it all and Martin and Becca wouldn’t even read the piece – it’s far less upsetting to ignore it. As usual Martin had a few people contact him with ideas for Sam to try… and a week later Radio 5 Live got in touch and Sam did an interview with them about some of the things he’s tried. We didn’t listen to the broadcast – we’ve all had enough now.

Is this really our story? No disrespect to Angela Carless, who always tells it with sympathy, but the general over-simplification and sensationalising of our heartache – it’s what the tabloids always do. Looking at the article I hardly recognise my brave son and brilliant husband: as one friend said, ‘it only shows the tip of the tip of the iceberg of who you really are!’ Well, I only have myself and my blogging to blame for this public exposure – and what was I expecting from the Daily Mail?!

Next day – as you may have noticed – I went into full retreat. For so long I have been writing everything in public, but a line had been drawn or I had fallen over a cliff or crossed the Rubicon or something… quite suddenly the grace, which had been seeping away for some time, had completely dried up: it all felt far too public, too embarrassing, too vulnerable – compromising our family security. As Martin pointed out, anyone could be searching for our names – 3 more TV producers had already been in touch not knowing of last year’s television interviews until we gave them the You Tube links:  the feeling of losing control of our own story was strong and at my wise husband’s prompting I temporarily closed down the blog. It felt really terminal – sad, shocking and devastating, the loss of a part of my life, something I’d been depending on – just like a sudden death!

Two weeks on I have come back to explain why I did it – but I don’t know if it is a resurrection or not. I kind of want to stay dead – I think I need a break and have done for some time, limping along trying to find a way to keep writing. Losing the outlet has been hard but good – a clean break, all the more definitive for being unseen in advance.  There was a season of grace for telling Sam’s story and sharing my journey and maybe it has passed for good in this form – or perhaps there are other changes ahead that I simply can’t see until I stop.  It’s not a punishment and it’s not a question of not being allowed to blog if I want to, but all that ‘ought to’, heavy stuff has to go. I am certainly very tired at the end of this amazing year and all I hear the Lord asking me is, “Do you still believe in your own story?”

So it’s time I went away and rediscovered it, learned to be quiet and rest and let my body, soul and spirit be restored – to just BE and not always have to DO…  Maybe that’s what I see for 2013 – a sabbath year. Then maybe, in an unknown amount of time, I’ll be able to write my story again the way I want it told, the way only I can tell it – rounded, multi-faceted, true, honest, grace-filled… and from the inside out.

Posted in Life choices, Sam's journey, Something to say | 1 Comment