Thanks and Inspiration

Fri 29 Dec

In early December, Juliet and I attended an Evening of Thanks at Great Ormond Street Hospital for those people that have set up Brighter Future Funds to raise money in the names of their lost loved ones.

It was a very well put together evening, a combination of inspiring words from GOSH staff, researchers and families to describe the challenges facing the children of GOSH and the work that is being done to save children's lives, along with some entertaining a Capella and a reading from Dickens by Juliet's new best friend, the actor Jason Isaacs, who spent a while chatting with us at the end of the evening.

It's made me realize that we, Juliet and I, as well as the family, friends and community that support us, have the power to not only to make a genuine difference to the quality of life of children in the care of GOSH but to save children's lives, both those in GOSH but also, through research, to save children's lives in hospitals elsewhere in the UK and, through the global community of scientists and medical professionals, around the world.

Doing so has got to be a way to create meaning after grief, to find a way not so much to say that we've beaten or got revenge on the world, but to make a better world despite what happened to Shani.

And between all of us we've already raised an incredible amount whether from wonderful friends dedicating celebrations and fundraising efforts to Shani's memory or from the immense Shine For Shani girls' London marathon walk. 

Thank you to all of you. 

As Counting Crows said, and Sheryl Sandberg showcased in Desert Island Discs as a memorial to hope, it's been a long December but there's reason to believe that maybe this year will be better than the last

... at least for some.

A Long December

Tue 26 Dec

It's been a tough few months.

For Joel's and Tammy's birthdays we just tried to  make sure that they had a fun time with nice presents whilst keeping things relatively low key. 

Tammy's had the added sensitivity of being a twelfth birthday rather than the batmitzvah that she should have had. 
No big party, no community celebration, no recognition of coming of age.
It obviously was not the right time for a family simcha.
And Tammy got that and pretty much took it in her stride, once we'd agreed that she would at least be able to get a laptop this year!

Tammy's non-batmitzvah (perhaps postponed batmitzvah is a more positive way of looking at it) happening at a similar time to the simchas of a few of our wonderful friends.

We tried to reclaim some joy and fully celebrate - and I must admit that it doesn't normally take much to suck me onto the dance floor and start going for it! - and for some of the time we managed, but often after a while a realization dawns, whether it's remembering the wonderful time we had at Joel's barmitzvah with Shani, the fact that Tammy's is not happening this year, or simply that we'll never have a celebration and a party for Shani's batmitzvah, and suddenly you feel in a sad.

Somehow, the music and the people feels further away, quieter, less real, and instead there's a pervasive feeling of sorrow and grey.

But in a way, that's fine.

A little grief within a celebration is actually a very Jewish way of doing things: salt with the challah, break glass at a wedding - grief isn't something that I can just put aside for an evening, I can't and wouldn't want to prevent thoughts of Shani entering my mind - I want her to be there, and having a moment of sad is sometimes the only way.

Grief and life, embracing both, together.

And often it only takes a little walk outside, a short chat, a friendly leg squeeze or hug, or a Wham song to get back into the reverie.

My birthday was worse.

A day of morose unhappy thoughts, and work.

Interrupted, happily, by lunch with Juliet.

Some days at the moment, we just get through. Chanukah was another example.
With Shani's name mentioned in the final verse of Mo'atzur - miracles being done for Shoshanas - that part was always going to be difficult.

On most days, candle lighting was thankfully a bit quick as we all had things we were doing in the evenings to get to, so we only got as far as the first verse and, somehow, that didn't feel so bad.

But on one of the evenings there was just the four of us with plenty of time and so we sung right through, falling apart at the end, weeping with sorrow at the words that had become lies, hugging together to regain a semblance of family moment and Chanukah memory.

Each of these times, occasions, birthdays, holidays, simchas, it has been a first, the first time that we've had to encounter time without Shani.

Each time has presented it's own version of grief and it's own memories rekindled and mourned.

Each time we've made it through with support from one another, family, friends and community.

And each time we've managed to find a way, sometimes small, sometimes wonderfully large and love-giving, to reclaim some joy and make some new memories to take into next year.

Finding a way to carry on

Fri Dec 29

I wrote this back in March but couldn't post it at the time. 

It's been a long December but there's reason to believe that maybe this year will be better than the last ...

Thursday 3 March

There has to be something to anchor to, something to stop the drowning, the sinking, the falling.

Otherwise there are no ways to carry on, nothing to carry on for.

Sometimes it's words of comfort from others.

Sometimes it's rationalizing what's happened just enough to make it bearable - even if it might not really be the truth, it is at least a truth.

And sometimes it is a real anchor, a foundation to build the future on.

For instance, during the Shiva, when I pointed out that all of our prayers and the prayers of so many friends around the world felt like they were in vain, Rebbitzen A pointed out that maybe those prayers had in some small way helped Shani to have the wonderful vibrant life that she had over the past six years, or maybe they meant that the end to that life came with less distress and suffering for her. 

We'll never know for sure but as long as the possibility is there, it can help.

There's the fact that we had the past four years at all - four years that the doctors said could never happen. It's an idea that should make it marginally easier to hold on, as if we're then grateful to have had those extra four years. But I find this one a hard one to digest. Yes, of course, it means that we have all of those wonderful memories of Shani that we would otherwise never have had, but why only four extra years? Why not five? Or ten? Or fifty?

But perhaps this was the right time.

What would have happened if she had recovered only to deteriorate again in a few years time, by which point she would have been old enough to know exactly what was going to happen to her? We had always put our hopes in medical science to come up with a long term solution but that might never have materialized. In reality it was more likely that Shani would not have made it and would have been so much more distressed knowing what her future looked like.

Is that true? I don't know, but that fact that it might be true can be an anchor and a comfort. Some tiny positive to take from a tragedy - sometimes that's all we have.

There's a similar truth that we have from the doctors: the operation had to happen when it did. Because one of things that is hardest to bear is that Shani was 'fine' when she went into hospital. She'd had fun at school that morning. She'd been singing in the car and quoting 'dumb Debbie' in an American accent in the car.

But, as I said at the funeral, she was getting bluer and slowing down a bit more each month. So the doctors say that they had to operate or she would have started getting breathless and distressed at home and the operation would then have been much riskier.

It does help, it must help, to know that all of the doctors that we spoke to, including Dr B in Israel, agreed that the operation had to happen, But what if it hadn't ...

Juliet's take on all of this is based on the idea that there is nothing that we can do to change what has happened: all we can do is change what happens next.

It's a very Jewish outlook - the real reason that we read from the Torah is not to find out the truth about what happened but to understand how we should live our lives and make the world a better place.

No one is saying that this is an easy route to take, but at least it says that there is a route, there is a future, there is something to look forward to, there are new meanings to build, there are children to look after and comfort and provide with love and fun and wonderful experiences for many, many years to come.

When our friends lost their little girl just over a year ago, it was suggested that the reason they were given their daughter to look after for such a short period of time is because they were people so strong, so good and so loving that they could give her a lifetime in just a few years and then be strong enough to keep loving and keep giving afterwards.

And it's this thought of keeping going afterwards, of making something good come out of something so terrible, of helping Shani to make the world a better place long after she has gone, that is one of the greatest foundation for a future of some sort without her.

Having a purpose and a meaning provides a source and an anchor for a future.

Helping other people to be strong like Shani, or to smile like Shani.

Reminding the world to cherish every moment that you have with those that you love.

Fighting for what you believe in and not giving in until there is nothing left.

Loving our children.

Making Shani's memory a blessing.

The Wonderment of Childhood

Monday 25 December

I wrote this poem many years ago and it's always summed up for me the childhood feeling that I'd love to be able to reclaim and sometimes feel that I've lost forever now that Shani has gone.


                   The Wonderment of Childhood

     - a recipe for self fulfilment and enjoyment               
                              in a world of systems and rat races
    
          take one open mind
           with no added politics, pollutants or responsibilities
    
          fill with unusual and impulsive things
    
         add a dash of mysticism and spirituality for the more
               enlightened wondrous poet
    
          mix in ideas, creativity, dragons, unicorns, pixies,
               clouds, rainbows, rain, orange, purple, children, flowing rivers and dresses, delight, fun

and a smile
in undecided amounts
    
          simmer for no time in a joy of dreams
    
          serve in an eggcup or an umbrella fit for a king
    
          garnish with love, romance and a sprig of parsley
    
                             - serve as many as can find it
    
                                          Simon  94     

Prayers - before and after

Sunday 24 Dec

Before: there were certain words and phrases that felt that they carried some weight and had some purpose beyond their direct on-the-page meaning.

They contributed towards the pervasive feeling of hope and faith that sustained us for many years and helped us to have such wonderful memories of Shani whist she was growing up.

Some of them were songs and some were prayer words - all of them made me think that there was a way ahead, that there was light to fight for.

They were words and prayers that had a lot invested in them.

They had a meaning and a healing strength that we thought might do something miraculous.

Maybe they did for a while.

After: the words changed and twisted on the page and they no longer felt the same - they no longer provided sustenance and optimism, they didn't help; they just felt full of pain, anger, failure and sad.

But in their place, other words appeared. 

Some of them provided a way to articulate the pain, anger and loss.
Others attempted to find a way to address how on earth this could possibly have happened, or to stay connected to Shani in some small way. 

And others just felt like they should be said.

Before

Hoshana Shoshana: on Succot we say the Hoshanot, the prayers that ask for us to be saved from a bad judgement.
We circle the synagogue holding the lulav (palm) and etrog (citrus) and chanting Hoshana, Hoshana.
The only thing that I wanted to be saved was Shani and so adding her Hebrew Name to the chant just felt right. Hoshana Shoshana, Hoshana Shoshana, over and over again until sometimes if felt that it might make a difference.

Na'aseh Nes L'Shoshanim: the daily Chanukah candle lighting at home ends with the last verse of the Mo'atzur song, the verse about the Chanukah story itself and all of the miracles that we celebrate every year. 
The verse includes the words 'Na'aseh Nes L'Shoshanim', translated as 'He made a miracle for the Jews who are called shoshanim (roses)' but which I translated in my head as 'He made a miracle for the Shanis' in hope that he might.

B'chol l'vavecha, ov'chol Nafshecha, ov'chol M'odecha: The first paragraph of the Shema, the central prayer in the Jewish religion, includes these words which mean 'with all your heart, and with all your soul, and with all your might', referring to the ways in which we should love God. 
For me, this became a three-fold plea for Shani, that her heart becomes physically fixed and whole again, that her life and soul is saved and complete, and that she has the strength to enjoy and experience a full and happy life. 
Both a prayer that the medical team behind her would work out a way to heal and fix her, and that she herself would keep fighting and stay strong.

M'varech HaShanim: One of the 18 blessings in the Amidah, the prayer at the core of each service, is to bless this year and coming years. Except that the word for years is exactly the same as the plural form of Shani - blessing the Shanis became another chant that kept me going and believing that perhaps someone was looking out for Shani and maybe the dark clouds would continue to stay on the horizon and come no closer.

Yedid Nefesh: On Friday nights we sing the beautiful song Yedid Nefesh, Beloved of the Soul, to welcome in the Sabbath. It used to give me so much hope, particularly from the second verse that talks about healing and strength. Now there is just pain and failure.

Please, O God, heal her now (אנא אל נא רפא נא לה‎)
by showing her the pleasantness of Your radiance (בהראות לה נעם זיוך‎)
then she will be strengthened and healed, (אז תתחזק ותתרפא‎)
and eternal gladness will be hers. (והיתה לה שמחת עולם‎)

Outside of the world of prayer, there were a few lyrics that really spoke to me and provided a little bit more strength and hope.

Rule The World became a special song five years ago when Shani was first very ill and hospitalized and told that she wasn't going to make it.

In particular, the final verse about lighting up the sky seemed to me to describe the amazing support we received from all over the world - people that we didn't even know singing psalms for Shani's health.

Rule The World, Take That 
You light the skies, up above me
A star, so bright, you blind me, yeah
Don't close your eyes
Don't fade away, don't fade away, oh

If walls break down, I will comfort you
If angels cry, oh I'll be there for you
You've saved my soul
Don't leave me now, don't leave me now, oh

Yeah, you and me, we can ride on a star
If you stay with me, girl
We can rule the world
Yeah, you and me, we can light up the sky
If you stay by my side
We can rule the world

Oh, all the stars are coming out tonight
They're lighting up the sky tonight
For you, for you
All the stars are coming out tonight
They're lighting up the sky tonight
For you, for you, oh

And of course, Magic by Coldplay just encapsulates everything that was awesome about Shani.

Magic, Coldplay
Call it magic, call it true
I call it magic when I'm with you
And I just got broken, broken into two
Still I call it magic, when I'm next to you

And if you were to ask me
After all that we've been through
Still believe in magic?
Well yes, I do
Of course I do

After

Suddenly the magic of the words before felt like curses.

They felt wrong and dirty, words I wanted to spit out rather than drink in.

They couldn't be said anymore - they only led to tears.

In their place were other words, words of anger and despair but also of comfort.

Words that had no power to save but could at least be said.

Salachti Shoshana: The dread of Rosh Hashana and Yom Kippur combined with the prayer for salvation and now seems to cry for forgiveness from Shani herself. I won't ever know whether there was anything that we could have done differently to stop Shani from dying, any intervention that we could have made, anyone extra that we could have brought in, any question we could have asked, but if there was we didn't, and actually we know in reality that there probably wasn't. 
However, that doesn't stop me from feeling regret that I didn't do anything more.

UMa'avir Yom UMai'vei Lai'lah: Just before we say the Shema in the evening, there is a prayer about God controlling the heavens, and switching from day to night, which I used to think about in astronomical terms as a confluence of religious thought and the ongoing workings of the cosmos.
Now, on closer inspection, it presents a different meaning.
The words talk about rolling away the day and bringing on the night, blessing God for the night, the dark, the time of sadness and the absence of light and cheer.
Night time is sadness and sorrow.

Pslam 6: If nothing else, at least my thoughts and feelings have a way to be defined, and there is some relief to find that others have trodden similar paths of despair. 
Heal me Hashem for my bones shudder, my soul is utterly confounded.
I am wearied with my sigh, every night I drench my bed, with my tears I soak my couch.

Alongside these prayers, there are some songs that speak to similar themes.

These first two helped me to deal with Shani's last few days, the distress and uncertainty of hospital life and the continued strength and wonderfulness that she always showed.

Long, long hours sitting and walking needed some inspiration to keep the hope going or at least to help to articulate what we were feeling.

As I think I said before, and as I said to the Shani's Coroner, Magnificent sums up Shani in one word, and the song lyrics speak to how much of an impact she had on the world and how she carried on loving life throughout her short but fiery life.

Can't find my way home, Eric Clapton and Yvonne Elliman (originally by Steve Winwood)
Come down off your throne and leave your body alone - somebody must change
You are the reason I've been waiting so long - somebody holds the key
Well, I'm near the end and I just ain't got the time
And I'm wasted and I can't find my way home


Magnificent (She Says), Elbow
This is where
This is where the bottle lands
Where all the biggest questions meet
With little feet stood in the sand

And this is where
The echoes swell to nothing on the tide
And where a tiny pair of hands
Finds a sea-worn piece of glass
And sets it as a sapphire in her mind

And there she stands
Throwing both her arms around the world
The world that doesn't even know
How much it needs this little girl

It's all gonna be magnificent, she says
It's all gonna be magnificent

The echoes slow
The bottle lands
The echoes slow

And there she stands

But afterwards, those two songs were not enough. In fact it was months before I could even listen to Magnificent again. I think it was when it was used as an instrumental backing track to Wimbledon highlights that I was felt able to go back. Even now it's a difficult one to listen to.

A Long December was chosen by Sheryl Sandberg, COO of Facebook, writer of Option B a wonderful book about dealing with grief and trauma that she wrote following the tragic and sudden death of her husband, as one of her Desert Island Discs.
It also happens to be a song by one of my favorite artists.
She said that, due to the immense hope that she felt they provided, the first two lines were perhaps 'the most important line to me that was ever sung'
I'm inclined to agree.

A Long December, Counting Crows
A long December and there's reason to believe
Maybe this year will be better than the last
I can't remember the last thing that you said as you were leavin'
Now the days go by so fast

And it's one more day up in the canyons
And it's one more night in Hollywood
If you think that I could be forgiven I wish you would

The smell of hospitals in winter
And the feeling that it's all a lot of oysters, but no pearls
All at once you look across a crowded room
To see the way that light attaches to a girl

And it's one more day up in the canyons
And it's one more night in Hollywood
If you think you might come to California I think you should

Drove up to Hillside Manor sometime after two a.m.
And talked a little while about the year
I guess the winter makes you laugh a little slower,
Makes you talk a little lower about the things you could not show her

And it's been a long December and there's reason to believe
Maybe this year will be better than the last
I can't remember all the times I tried to tell my myself
To hold on to these moments as they pass

And it's one more day up in the canyon
And it's one more night in Hollywood

It's been so long since I've seen the ocean I guess I should

I stumbled across Walk The Same Line when looking for songs by Everything But The Girl beyond the album that I already had.
They sing so beautifully and this song spoke volumes about the support we get from close friends and family, and for me particularly from Juliet.
When we lose faith, others can step up and provide some for us.
When we're lost, our community is there to help start finding the way again.
Without that I'm not sure how I'd have made it through to the end of this godforsaken year.

Walk The Same Line, Everything But The Girl
If you lose your faith, babe
You can have mine
And if you're lost I'm right behind
'Cause we walk the same line

Now I don't have to tell you
How slow the night can go
I know you've watched for the light
And I bet you could tell me 
How slowly four follows three
And you're most forlorn
Just before dawn

And so, if you lose your faith, babe
You can have mine
And if you're lost I'm right behind
'Cause we walk the same line

When it's dark, baby
There's a light out shinin'
And if you're lost I'm right behind
Cause we walk the same line

And I don't need remindin' 
How loud the phone can ring 
When you're waiting for news
And that big old moon
Lights every corner of the room
Your back aches from lying
And your head aches from crying

And so, if you lose your faith, babe
You can have mine
And if you're lost I'm right behind
'Cause we walk the same line

When it's dark, baby
There's a light out shinin'
And if you're lost I'm right behind
'Cause we walk the same line

Thoughts on Rosh Hashanah

I wrote this four years ago but didn't feel able to publish it at the time. 

This year I don't think I can find a way to engage spiritually at all. 

It's all just too raw, too intense, too full of rage and despair. 

But maybe I can take some small strength from the thoughts and memories of past-me, from the love of our wonderful family and friends and, in particular, from my inspirational wife and her amazing band of friends that undertook a marathon walk this week to Shine for Shani and help other heart children have a better future. 

Shana Tova.

Tuesday 3 September 2013

There’s a prayer in the Rosh Hashanah (Jewish New Year) service called Unatenah Tokef.

It talks about this being the time of year when God figures out what is going to happen to everyone over the next 12 months: who is going to do well, who is going to suffer; who is going to be healthy, who is going to get ill; who is going to live, who is going to die.

It fits in with the idea that Rosh Hashanah is supposed to be when we as Jews take stock of ourselves and decide what sort of person we’re going to be over the next 12 months and what we’re going to do to improve ourselves and the world around us.

The two are strongly coupled in that an ‘evil decree’ can be averted if we take it upon ourselves to genuinely commit to tefillah, tzedakah, teshuvah – to prayer: self-reflection and connecting with Godness; to charity: giving time and money to improve the world around us; to making ourselves a better person.

And that sort of works in the abstract – there’s the possibility of something bad happening in the future unless we take steps now to prevent it happening, so we’d better get praying and making things better. Then, at least if bad things happen we’ve made ourselves or the world a bit better.

But does it work if you’re already worried because there's a reasonable chance that something really bad could happen to someone that you love so dearly – who is going to live and who is going to die. Because now we’re not talking about incremental changes – this could be fundamental. Irreversible. There’s no way back.

So what to have in mind during Rosh Hashanah? How to pray? Can I ever pray enough? 

What if there IS an evil decree and I am unable to avert it?

And why??? Why me? Why Little S? She can't have done anything to deserve any of this?!

J and I have always tried to think positively, to make the most of what we've got and not to dwell on why this is happening.

Because to do anything else is futile and can only lead to madness.

So I guess we have to fall back on hope, faith and love.

To dare to hope that next year will be better, sweeter, happier.

To have faith that tefillah, tzedakah, teshuvah, that prayer, charity and self-improvement might just make Little S's chances better - after all there's nothing to lose and everything to gain.

And to love every minute with her and with all of her wonderful family and friends as, in the end, that is what's really important.

Shana Tova U'Mtukah - a very happy and sweet new year to all 

The Quality of Tears

Thu 14 Sept 2017

When I went to the opticians recently, a lady looked into my eyes and told me that she thought i didn't have high enough quality tears.

I guess sometimes quantity trumps quality.

Over the summer, grief to some extent took a back seat as I was somewhat preoccupied by my left foot.

In particular, due to a combination of my naive attempt to make myself feel better by going on a morning run and our council's failure to keep our roads free of pot holes, I had to cope with a very swollen ankle and an undisplaced fracture of the fibula.

So navigating the world whilst hobbling about in a large black plastic boot took up much of my mental and emotional energy.

As did being on holiday. 

Taking the kids round the jaw dropping sights of the Colliseum and the Vatican City in Rome in 38 degree heat was not something we would have done with Shani. 

Staying out late in the cafes and shopping streets of Sorrento would also have been difficult. 

We probably would not have gone swimming in the surprisingly warm sea in Hove for hours if Shani was sitting and playing on the beach. 

We'd have done other things. 

We'd have done sandcastles, paddling, story reading, toys, princesses, Barbies, cuddles, tantrums.

In fact, not having Shani around has meant that we've been suddenly and unceremoniously wrenched out of the whole world of small children. 

We no longer have play dates with little people, no more glorious school plays with cute children singing songs and trying to dance, and very few kids parties to go to anymore.

Within a few short months Tammy had completely finished primary school, and so now we only have secondary schools to attend - big, important institutions with hundreds and hundreds of children and a dozen or more teachers for each child to get to know. 

Of course, we already had Joel in big school and Tammy was always going to get there this year, but we loved being involved in Shani's, littler, school - 

watching her learning to read English and Hebrew, 

talking about the sedra each week and looking at the picture she drew, 

exhilaration at being 'star of the week', 

going to school plays, 
hearing her sing mo'atzur at Hanukkah and mah nishtana at Pesach,

and the magnificent achievement that was her sports day. 

But instead of five more years of primary school childhood we have none. 

Last week Shani would have started Year 2.

It was tough.

We had lovely messages from parents in her class that they'd been thinking of us. 

Shani's class have kept her teddies on display. 
They talk about their friend Shani to each other and to new members of their class. 

They don't want to let her go any more than we do. 

Shani's school have been incredible.

Her teachers appeared on the first night of shiva mourning and covered us in love and support and wise words, reassuring us that Shani's classmates were being cared for and that they wanted us to remain part of the wider school family.

They presented an award at the end of last term to a girl in the school that has been trying to get on with her life despite suffering from multiple broken limbs as a result of brittle bones disease.

She was presented with the Shani Berman Award for Determination - a tribute both to her and to Shani's constant desire to just get on with life despite everything that it threw at her.

Her Headmistress wrote a piece for the school magazine that I've included in this blog and which sums up the wonderful love that the school had and still has for Shani.

Shani loved her school.

They looked after and nurtured her but let her get on with life, have fun, laugh, be joyous, make some lovely friends that we miss very much, and blossom into a magnificent little girl with a magic heart.

And for that we will always be grateful.

As Shani's headmistress wisely said in a recent letter to us, 'may your memories ease your pain and help you to smile through your tears.'

A world away

Sunday 13 August 2017
Sorrento, Italy.

Six months ago today we still had hope.

Six months ago today we didn't want to tell the kids how bad things might get because we still thought that there was a way back.

Six months ago today we thought that the medical team in intensive care would find a way to fix all of the problems that Shani had and get her to wake up.

Six months ago today we believed that Shani would prove everyone wrong again, as she had so often before, and find a way to live and laugh again.

Six months ago today we still had hope.

...

Exactly a year ago, after work, I met Juliet and the kids (Joel, Tammy and Shani), in town near St Paul's Cathedral, to hunt for Dreams that had been left in glass cases all over London by the BFG.

Shani had the best time, laughing and getting excited when we found the Dream cases.

I remember her being so delighted to see me appear in town after work, and I got to whizz her around in her wheelchair in the streets near to St Paul's, and all of us having pizza together and getting the train back home.

Simple pleasure.

But so wonderful.

Now denied - a reality away.

Back beyond the impossible dream.

A week ago, we were preparing to go on holiday as a family without Shani for the first time.

A important time, not for healing but for enjoying.

For building memories together, because we can't live our lives fixed in amber with only the memories of the past, we have to make the memories of the future.

We have to reclaim the right to smile and laugh.

We have to learn to give ourselves permission to have fun.

We have to remember to grieve whilst seizing every moment to live life to the full.

We have to keep Shani with us whilst we do things without her.

Most of the time that's ok.

We've dropped jaws in the Sistine Chapel, 

been awe struck in the Colosseum, 

splashed around fountains in Rome,

swum in Sorrento

But sometimes it's really hard.

When we're relaxing by the pool and there's too much time to think

Or we're walking through town, or swimming in the pool, and remembering Shani being with us, laughing or chatting or complaining!

On Tuesday it's going to be six months to the day.

I'll still try to have fun.

To ensure that Joel and Tammy are smiling.

But I miss her.

So much.

Inquest

Monday 10 July, St Pancras Coroner's Court

Today I went to court.

To a Coroner's hearing.

For the inquest that was opened the day that Shani died.

I had woken up in a lovely hotel with my wonderful wife, having spent a very relaxing and invigorating Sunday doing little apart from a bit of swimming, strolling, chatting, eating and just spending time together in a way that we haven't been able to do for years.

When people talk about the overused phrase 'quality time' this is what they have in mind.

Unfortunately, due to the inquest, our stay came to a swifter end that I had intended as I had to get to St Pancras by 9:45 on Monday morning and, bearing in mind that I've been hobbling with big black plastic boot on my foot for four weeks since I broke my fibula bone after getting my ankle stuck in a pot hole on a morning run, I needed to make sure that I left the hotel in good time.

About 45% of deaths in the UK are reported to a Coroner and it's their job to decide whether there are any questions that need answering in order to properly understand how and why the death occurred. If extra information is required then an inquest is opened, questions are asked, statements are gathered, and often witnesses are asked to appear at a hearing in order to find out what happened.

At our hearing, our consultant Dr D, our surgeon Mr K and the intensive care consultant Dr P were all asked to appear.

This was a public hearing in which my daughter was going to be discussed and a public declaration made about the cause of her death. 

I was not obliged to go.

But as Shani's Dad I had to be there.

I met Juliet's Dad Geoffrey at the court to ensure that I was not there on my own, and we both spent a few minutes before the hearing exchanging pleasantries with the doctors.

Juliet had decided not to attend - which was a pretty sensible decision (as Juliet's decisions normally are) - we didn't both need to put ourselves through this ordeal.

The hearing itself took place in a small court room, with a raised bench for the Coroner, a raised box for the witnesses, and a few rows of seats for us, the witnesses, clerks and volunteers, and any members of the public or the press that might decide to sit in (thankfully no one did).

Each witness took the stand in turn, and the Coroner asked them to explain how Shani came to be in their care and what happened whilst she was. For Dr D this meant providing a potted history of the past six years, from the very first time that he met us when Shani was just six weeks old - the day that we realized that this was not just a simple heart murmur and that nothing was ever going to be the same again.

Both Drs D and P were very professional in their delivery but also spoke compassionately, looking at us with sympathy - it was not a purely dispassionate, clinical discussion.

Mr K did try his best to be sympathetic and compassionate but, as a surgeon, I suspect that he had most emotions drilled out of him long ago. Don't get me wrong, i'm not saying that he does not care, far from it, he does incredible things to save children's lives on a daily basis, just that he's a little bit more clinical than the Drs in his interaction with people.

It was a hard couple of hours listening to the Coroner's questions and the doctors responses. Pretty intense and saddening but all handled with dignity. 

I asked a few questions as well - after each witness, the Coroner asked me if there was anything that I wanted to ask them.

I wanted to find out a bit more about why, whilst Shani was on the ECMO heart and lung bypass machine for two days following her cardiac arrest the day after the operation, they didn't carry out a catheterisation to see if it would help them to figure out why the cardiac arrest happened, particularly if it was due to problems with her arteries. After all, we already knew that during the operation Mr K found that her pulmonary arteries were blocked and had to repair them. It turned out that they already had information implying that the arteries were ok, and that Shani was already too weak for an invasive procedure like a cath.

Although the Coroner did ask a bit about this, I also wanted to hear a bit more about why the operation was necessary at all, and what the outcome would have been for Shani if she didn't have the operation.

Of course, no one could say for certain, but the doctors basically confirmed what I already knew, that Shani's life chances were deteriorating, that she was only going to get worse, and that we would not have had a lot of time together before things became distressing.

Somehow, I felt a small wave of relief when this was reiterated in open court: however terrible the outcome, we really had no choice but to agree to have the operation.

Dr D suggested that since the operation he had been questioning whether or not they had got the timing right, and whether things would have been better if they had operated a bit earlier. The consensus seemed to be that it wouldn't have made much difference to Shani's chances. On the other hand, there was some real value for us as a family in having those extra few months together.

Feeling that I needed to add something, I took the opportunity to point out that we had some wonderful times together in the last few months of Shani's short life.

We have some gorgeous memories of Shani from Joel's Barmitzvah in October - it was such an amazing party evening and Shani loved it.

And Shani also was able to take part in her school's Hanukah play Little Brave Hearts in which she told the audience: “I was brave when I saw a big dog in the park”. I pointed out that that really summed up Shani's attitude to life - she just got on with it and never worried about her magic heart and what it might mean  for her future. Despite the fact that she knew she couldn't do everything that her friends could, I don't think she ever saw it as a limitation to life.

By the end, both Dr D and I got pretty emotional.

Thinking about it afterwards, it felt that it was actually really important to me that Shani and her case were discussed in such detail in a public and official forum. It made me feel that officialdom cared about what happened to her, that she was missed by the hospital and those that looked after her, and that 'the system' had checked that everything had been done that could have been done and that they tried to learn from Shani's care to try and improve future care for other children.

And by being there and speaking it made me feel that this was being done with us rather than to us.

In some way, it also removed a cloud of uncertainty from above me.

I guess I knew that there was no misdemeanor or negligence to uncover, but until the Coroner had actually pronounced the cause of death at the end of the hearing - cardiomyopathy (heart failure) and surgery required as a result of pulmonary atresia with ventricular septal defect and mapcas - I wasn't able to close a question in my mind about exactly what had happened.

In summing up, the Coroner said that she thought that Shani sounded like a very special and brave young girl.

I said that I thought she was Magnificent.

------

This is where
This is where the bottle lands
Where all the biggest questions meet
With little feet stood in the sand

And this is where
The echoes swell to nothing on the tide
And where a tiny pair of hands
Finds a sea-worn piece of glass
And sets it as a sapphire in her mind

And there she stands
Throwing both her arms around the world
The world that doesn't even know
How much it needs this little girl

It's all gonna be magnificent, she says
It's all gonna be magnificent

Elbow, Magnificent 2017

Immanuel Prep tribute to Shani

This article was written by Shani's wonderful Headmistress, Alexis Gaffin, for the end of year school newsletter, published in July 2017, where it was accompanied by a gorgeous photo of Shani at sports day.

Whilst this year at I.C.P.S. has once again had many highlights, we also suffered a terrible loss. It was with a heavy heart that we heard of the death of Shani, our girl with long plaited braids, a pink floppy hat and a smile that could light up the darkest of rooms.

Shani was born looking perfectly healthy. At six weeks old, doctors told her parents that she had in fact been born with a congenital heart defect called pulmonary atresia, meaning  that she had a large hole in her heart and was missing the valve that links the heart to the pulmonary artery. Shani had her first operation as a baby; surgeons at Great Ormond Street Hospital implanted a tiny Gore-Tex ® tube into her heart where the valve should have been. She seemed to be making good progress and the doctors were cautiously optimistic. Then, at 20 months, Shani suffered from heart failure and spent two weeks in hospital trying to recover. At this point the doctors told Mr and Mrs Berman that she would not make it. She did.

When Shani joined Immanuel College Preparatory School she was like every other child at the beginning of their schooling; enthusiastic to learn, unsure of letting mummy go, excited to try to do things at ‘big school’ and keen to make new friends. We knew that Shani had a ‘magic heart’ and we wanted to facilitate her pathway to independence in a safe and secure way. Mr and Mrs Berman assured us that Shani knew her limitations and that she could be encouraged to participate in everything as she would let us know when it was time to stop. So began Shani’s time in our care.

Shani was determined to achieve her best, loved to learn and to enjoy herself and was kind to everyone around her. She took part in most activities happily and we respected her indication that she needed to be cautious. She preferred to sit with a book or chat with a friend at playtime rather than take part in games and she always had company. She was often the referee or judge during PE activities but was unwavering in her effort to cross the finish line at Sports Day, achieving a personal best in so many ways and leaving us all both so proud and so awestruck.

In November of last year Mrs Berman contacted me to tell me Shani would need to have surgery as her oxygen levels were becoming further depleted. We prepared for her last days at school prior to the surgery, which included Mum attending the dress rehearsal for the Chanukah Show, as surgery was scheduled to coincide with the main performance. Unfortunately, Shani caught a chest infection the week before and so the operation was postponed. The positive side was that we had Shani at our show Little Brave Hearts in which she told the audience: “I was brave when I saw a big dog in the park”.

Shani and I swapped smiles on what was to be our last day in school together. She gave me one of her biggest and brightest and I hope that I did the same. She left with an agreement that when we next met she would have another big smile ready for me and I know that when she said it, she meant it. The picture I have of her in my mind is from that day.

We all learnt so much from Shani, lessons that she effortlessly taught us as she went about her daily life. We are blessed with so many memories that even in her absence she continues to teach us. During our first week back at school children in all the classes wrote their own memories of Shani - she touched them all. “Shani had a big smile”, “Shani always waved at me when I walked passed her”, “Shani always tried her best ”. We continue to talk about her and wonder what she would think or feel in different situations. Her classmates refer to her regularly, and with ease, and love having some of her teddies in their classroom.

All our children, from Reception to Year 6, honour Shani’s memory in the way that they care for each other and the efforts that they have made to care for others. They have raised an incredible £2,400 for Great Ormond Street Hospital, where Shani was cared for throughout her life. I am grateful to all the parents and families for making this possible. In addition, thanks go to the parents of Year 1 for the donation of a friendship bench, which sits in Shani’s favourite place in the playground, and to the PSA for a pink rose bush. Shoshanah, Shani’s full name, means rose. As it blossoms, I will think of her, for it encapsulates her: sweet, fragrant and giving of pleasure to others. May her memory be a blessing.

Alexis Gaffin – Head of Preparatory School