For hope, for tears, for life

The Shine for Shani Football Marathon, on Sunday 29 July 2018, was an incredible day.

A day where hundreds of family, friends and supporters had fun, played loads of football in the rain, ate lots of delicious home made cakes (and some pizza) and created the most wonderful feeling of inspiration and community.

All in Shani's memory and all with a view to making life better for kids with magic hearts like Shani's.

Thanks to all of that support and some amazingly generous and wonderful people, we raised over £10,000 that day for research into improving the success rates of kids' heart transplants!

That changes and saves lives and has the power to make the world a better place.

It was a day that felt really positive amongst the pain of the past year and a half.

Where it felt like we were all accomplishing something special together.

Where we were all smiling for Shani.

There is Jewish prayer in the Shema that I used to say for Shani in the hope that it would make a difference:
With all your heart and with all your soul and with all your might.

A prayer that Shani would eventually have a whole and healthy heart, that she would live a full life and that she would do so with strength and with courage and with determination.

Obviously that didn't happen, and for a while I found it impossible to say the prayer at all without being overwhelmed by tears.

At times I was enraged at the Divine

Destroyer of Worlds
Render of Souls
Bringer of Night
Crusher of Hope

Now however, with the inspiration of friends I am starting to feel that it is a prayer that perfectly sums up what it is that Shine For Shani is trying to achieve for other children with difficult heart conditions: a healthy heart and a life of vitality and strength.

For hope
For tears
For life

Over the summer I had the pleasure of swimming in the sea in Cornwall and Hove.

On the surface there is life and colour and noise and action. 

Splashing and playing and laughing.

But when you swim underwater in open water it can be frightening. 

It is a place of worry and anxiety. 

Dark, cold and silent.

A place where sometimes you are not even sure if you can make it back again. 

It just feels too hard too far too much.

But you do.

And for a while you enjoy the surface world and its life and colour and noise and action. 

You enjoy living and working and the company of good people.

And the cycle continues.

Life and tears.

Up and down.

Above and below the water.

Living and grieving.

Not always easy but certainly possible and made so much easier by being able to focus on the good in the world.

In spite of all of her tears, Anne Frank somehow was able to say

Think of all the beauty still left around you and be happy

Shana Tova U'MTukah

A very happy and sweet New Year

Keep Talking

Tuesday 10 July 2018

Sometimes it can be the little things that knock me down.

I can be looking at my phone and see that the battery gauge is at, say, 62% and I'll think of Shani and the way that whilst she was in hospital we would continually watch the numbers, in particular her oxygen saturation percentage, the number that for most of us is normally at around 98% and for Shani was more like 70% for most of her life, and worry when it dropped to low 60's% as that meant that things weren't going well and that the nurses might need to intervene, or worse might not be able to intervene.

I can be looking at my phone and see that the battery gauge is at, say, 62% and I'll think of Shani and my breathing will get a little shorter, my anxiety level will rise slightly, I'll stop thinking about whatever I was doing, I'll start to feel down, my eyes will begin to moisten, my face crumple.

Sometimes the feeling will pass and I'll get back to doing whatever I was doing.

But sometimes the dam will break a little more and I'll fall, into despair, unable to do much apart from feel sad or angry or helpless, reliving the final dark dark days.

There's a silence surrounding me
I feel like I'm drowning.

Keep Talking, Pink Floyd

Sometimes just breathing leads to sadness.

I try to focus on breathing to cope with stress and grief - mindfulness helps steadiness in a storm of emotion or trauma.
But deep breathing, filling myself with life-giving oxygen, sometimes reminds of what Shani could not do.
And from there, sadness.

And then the times where nothing in particular triggers sorrow and rage.
An empty house.
A day out without her.
A difficult meeting.
A stubbed toe.

The way back can be simple - the storm passes.

But it can be hard, and there are things that can help.

One of them is finding space and breathing.

And one of them is talking.

This is talking.

Keep talking.

Keep Talking, Pink Floyd

For millions of years mankind lived just like the animals
Then something happened which unleashed the power of our imagination
We learned to talk

There's a silence surrounding me
I can't seem to think straight
I'll sit in the corner
No one can bother me

I think I should speak now
Why won't you talk to me
I can't seem to speak now
You never talk to me

My words won't come out right
What are you thinking
I feel like I'm drowning
What are you feeling

I'm feeling weak now
You never talk to me
But I can't show my weakness

What are you thinking
I sometimes wonder
What are you feeling

Where do we go from here?

It doesn't have to be like this
All we need to do is make sure we keep talking

The Wall

Monday 09 July 2018

I was in Israel last month for a wonderful few days celebrating the Barmitzvah of our very good friends' son.
J and I had an amazing time, including a couple of days relaxing just the two of us in Tel Aviv.

Barring one night away last year, where I had to leave the hotel early to get to Shani's hearing at the Coroner's Court, it was the first time that just the two of us had been away on holiday since before Shani was born, over seven years ago.

We definitely needed that time together - I hadn't realised how little time we'd spent with each other recently!

After the Barmitzvah a couple of us went into Jerusalem to go to the Kotel (the Western Wall) and to meet up with some of my cousins.

I arrived at the Kotel without having really thought about what I might feel when I got there, and I was taken aback by the scale of the emotions that roared through me on approaching the Wall.

I'd been there a few times since Shani was born and each time I had arrived with thoughts of hope and healing, that somehow things would be ok, that the Divine might help to make her better, that with some help Shani would find a way to keep her magic going and continue to dodge the dark clouds overhead.

Those visits were full of anguish, but there was also hope.

Now there is no hope.

Instead there was despair and rage and tears and anger and sorrow ... and silence.

I have a searing hole at the core of my reality.
At the Kotel, all of the barriers fell away that I had built around it to cope with life.

But I was not alone.

I had a friend with me, a wonderful friend, a brother.

He was there to guide me back to the shore, 
out of the raging torrent, 
holding firm to provide a route back to life, 
and a way to enjoy the remainder of our holiday in Israel.

Spring has sprung

Wednesday 18 April

Everywhere you look nature is waking up, sprouting, growing, budding, blossoming, unhibernating, coming alive, and giving rise to new life.

People too. Spending more time outdoors, less clothes, more smiles, no longer feeling the grey of Winter weighing them down.

It's Spring
time of renewal and rebirth
time of new lambs and playing children.

Sometimes that's a source of joy if we focus on what is, 
but sometimes it's sadness when thoughts turn instead to what, and who, is not.

Where is my little girl?
No longer laughing and enjoying the sunshine.
No longer trying to ride her bike.
No longer playing on the swing or trampoline.
No visits to the park or beach.
Why can't she be part of the world's rebirth?

I want her back.

It's hard when hope survives after reality says no: there's no turning back the clock.

So we have to find other ways to achieve that renewal, and make her name live again in our memory.

We're forming a charity to make sure Shani did not die in vain, to try and do something to reduce the chance of children dying from rare and dangerous heart conditions in the future.

In our world, children are not supposed to die. 

And thanks to improved health care, education and the fruits of scientific research, to a large extent this is now true.

In 1980, 12% of children worldwide died before their 5th birthday.
By 2015 that had dropped to 4.5%.
source: ourworldindata.org

In 1980, 21,026 children died in England & Wales before their 5th birthday.
And 1,785 died between the ages of 5 and 15.
By 2015, 6,998 children died before they were 5, and 523 between the ages of 5 and 15.
source: www.ons.gov.uk

That's impressive progress but a lot more remains to be done - every child that dies is a tragedy.

We want to help make further inroads into these numbers, and enable more children with complicated heart conditions to live healthy lives.

We want to be part of the journey that has developed incredible medical and surgical techniques that save and improve lives of heart children across the world, and which gave us the five and three quarter years that we had with Shani.

We want to help kids with magic hearts. 

We want to shine for Shani.

Sarah's poem

Written shortly after Shani's stonesetting.

Goodnight my lovely girl

My shining star, my light.

Speed through the clouds past the moon and fly out of sight.

Fly into the universe, slide down rainbows, swing on shooting stars.
I will hear the echo of your laughter wherever you are.

 Sarah, Shani's grandma, Feb 2018

Poem for Shani

Sun 18 Feb
Poem for Shani

An angel lived among us,
A soul of courage, blazing with a love for life,
A fiery little spirit,
burned brightly, but only for a while,
leaving us with memories of a child

Days can still feel happy
But only when the sky is deep and blue
Nights
bring sorrow
But also comfort when the stars shine for you

Tears forever will flow easy
When rainbows bright are shining in the sky
Reminders
Of how our angel kept on smiling
How she kept her magic shining
How she sent the black clouds flying
How she somehow turned her darkness into light

Simon Berman, 2018

Stone Setting

Sun 18 Feb

The words of my incredible wife at Shani's stone setting.

Our little girl lived her life as two very different people.

Shoshana was the child with pulmonary atresia and a hole in her heart, with severe right ventricular dysfunction, with Mapcas, with cyanosed lips, and clubbed fingernails.
The little girl that regularly went to GOSH and was known by the world’s best paediatric
cardiologists.

Who took captopril, carvedilol, digoxin and an array of other heart medicines, underwent open heart surgery and had her own nurse come and see her every fortnight to check her oxygen saturation’s hadn’t fallen below 70%.

The 5 year old who struggled to climb the stairs or walk to Shul.

The kid with the blinged up wheelchair and the magic heart that didn’t work properly.

But really she was Shani.

Friendly, funny, bossy and gorgeous.

She was the one who perched on the newspaper rack watching multiple episodes of Big Time Rush.
Who debated with cousin Maia who would be Ana and who would be Elsa.
Who watched Tammy for hours playing Lego in her bedroom.
Who screamed until she went blue when dropped off at Immanuel Prep but then spent the day perfectly forming her letters and chattering to her teachers.

It was Shani who giggled hysterically when Joel woke her up in the morning by pushing her teddies through the slats in her bed.
Who yelled for a plate of bits and bobs when she got home from school.
Who demanded we sit with her before she would settle down to sleep.
Who stood on the wall at her soft play party, surveying all her friends and singing “I’m taller than you” so they all stopped running and joined her.
Who played teddy school with Aunty Hannah all afternoon.

It was Shani who stood up in front of the whole school and their parents to tell everyone she was brave “because she didn’t run away when she saw a big dog”.

The girl with the silver swirly dress who tried to steal the attention at the start of Joel’s Bar Mitzvah party but begged to go home half way through.
The girl who came third out of three in her sports day race but was treated like Usain Bolt.

The little girl who loved sitting on David’s knee watching CBeebies in Safta’s flat in Hove.
Whose eyes shone when we lit the Chanukah candles with Frampa and Dooith, and sung the songs she learned at Gilah.
Who sat in the back of the car singing “We built this city on Rock and Roll”, who could quote the entire Dumb Debbie sketch from tween tv show Victorious, word perfectly.

The girl with the pink fluffy hat.

Shoshana, Shani, our precious girl.

And whilst we knew Shoshana was fragile we never believed we would lose Shani.
And when we did, we could not imagine that we would cope without her.

But we did, and we are, and we want to share how we are doing it:

• We have 2 other loving, gorgeous, brilliant children who despite everything continue to
grow into incredible people that make us so proud.

In an impossibly hard year they continue to make new friends, work hard and take up new hobbies.
To take home a prize for English and a youth impact award.
To write books and be part of the youth council.
To go to Shul every week even when we struggle to find meaning in prayer and to continue their Jewish studies with enthusiasm.

Their resilience and love in such a challenging time inspires us.

• We are lucky to have the most supportive and wonderful parents, step parents, siblings and cousins that hold our hand all the way, even when they are mourning too.

Together, we continue to celebrate, birthdays, chagim and other times of joy, even though every time of collective happiness is tinged (and sometimes swamped) with the sadness and sorrow that Shani is not there with us.

• And the four of us are truly blessed to have a group of wonderful, loving friends who have been remarkable - with food, invitations and messages of support and, most importantly of all, by being there for all of us so that we know that we are not on this journey through grief on our own.

• And our BES@Yavneh community that we feel so close to, with whom we have celebrated simcha and shared sorrow, have provided us with such incredible support through the shiva and shloshim and beyond.

Shani loved being in shul: we still feel her presence there strongly, and it is comforting that many in the community feel it too.

• By the things we do in memory of Shani, to provide a legacy in her name, by supporting the efforts of medical research and hospital staff to save and improve the lives of other children with heart problems.

Of course there are our amazing Shine for Shani walking team that raised so much money and showed that we don’t walk alone.

The children who raise money in Shani’s name whether through sponsored skating, screen silence or bake sales.

The friends that take on big challenges in her memory: running, cycling, swimming, and sometimes all three.

The plans we have for Shani’s Brighter Future Fund for Tammy’s Bat Mitzvah and more challenges in the coming years.

• And alongside the fund raising efforts, we take immense comfort from the links that we are retaining with Shani’s school, hearing that her classmates still tell stories about her and play with her teddies, and that Immanuel Prep have introduced the Shani Berman award for bravery in her memory and put beautiful roses and a friendship chair in their playground.

We know that year two without Shani will be as hard - or maybe harder - then this one has been, as time continues to put distance between us that we don’t want.

But with Team Berman and our dear friends and family around us, we will find a way to keep memories of our gorgeous little girl with the magic heart alive.

The Last First

Tue 13 Feb

Tomorrow night, one year ago, we were woken up (Jules in hospital flats and me at home) to be told that Little S was fighting for her life.

And within a couple of hours we had to face the worst news that a parent can possibly hear.

Since that terrible night I often heard that the first of every special occasion and important date is always going to be hard.

The first of Shani’s birthdays.

The first Pesach.

The first Summer holiday.

The first new school year.

The first Rosh Hashanah.

The first Chanukah.

The first yahrzeit.

I agree – it is.

And yet.

We are shortly to face the last first.

The final event within the annual cycle of life without Shani.

And one that has never happened before.

And after that … the second, the third, the fourth, the nth.

Years of life ahead without Shani.

Years of life without our gorgeous, smiley, feisty angel.

Years of life spent in anger at why she wasn’t given the chance that we have at life, and in wonder at how she lit up every room and grabbed at life in every moment.

Years of life in which we will keep on falling down in grief and keep on getting up and choosing life again.

These seconds, these thirds, these fourths.

They might not be as raw as the firsts but I’m fairly sure that they will still be daunting, painful – perhaps though a different sort of pain.

At the stonesetting this weekend, after many months of slowly sinking back into some kind of a normal life, we will grieve publicly again.

We will be together with wonderful family and friends.

We will gather at Shani’s side and say Kaddish one more time.

We will remember Shani and her smile and try and draw strength from her memory.

And we will talk about the future.

Judaism tells us that after a year of mourning, the world is waiting for us once again.

That grieving never stops.

And that we should choose life.

A year ago

Tuesday 30 January 2018

Today I was reminded that it's been a whole, long, soul-wrecking year since Shani last spoke to me.

A year since we chatted, laughed and played together.

A year since she went into hospital for that last fateful time.

A year since I last heard her quote the Dumb Debbie sketch from TV.

A year since I saw her smile.

A year since her presence brightened up the room.

A year since she slept in her bed and cuddled her teddies.

A year since I kissed her goodnight.

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