One little candle

Friday 28 December 2018

Sunday 18 November

Tammy's Bat Mitzvah, on the weekend of Sunday 18 November, was an intensely emotional roller-coaster.

It's something that we'd been looking forward to so much for so long, and yet mixed-in was an equal measure of anxiety and, to some extent, even dread.

The waiting had been extended for an entire year - Tammy's Bat Mitzvah was supposed to be in November 2017, around her twelfth birthday, but after Shani died in February 2017, we felt that it was far too soon just a few months later to try to create a happy celebration for Tammy.

So, with Tammy's agreement, we put it off for a year.

But even a year later the challenge remained - how to fill a weekend with joy and laughter and celebrate Tammy coming of age whilst not feeling that the whole affair was a sham, ripped apart by the massive Shani-sized hole at the centre of all of our lives.

How to smile whilst feeling like crying.

How to party with tears in your eyes.

How to be an amiable host whilst wanting to just curl up in a ball.

And as the day got closer, the feeling in the pit of my stomach grew - the dread that we wouldn't find a way to balance living and grieving on this most special of times for Tammy.

Of course, the answer was to bring Shani in and make her fully part of the occasion.

Not to pretend that this was a 'normal' celebration but to find the space for Shani and to recognize her absence fully.

And to realize ourselves that we weren't going to feel happy for the whole of the weekend but that that was ok, and we could always take some time out at any point should we need to, to cry and breathe and be with Shani for a moment.

And Tammy led the way for us.

We tried to build a ceremony for Tammy that allowed us and her to remember, commemorate and even celebrate Shani in a way that made sure that it was still very much Tammy's day.

There was Rainbow of Rhymes, the wonderful poetry book that Tammy had compiled in Shani's memory to raise money for Shine For Shani.

Within the Bat Mitzvah ceremony, family members lit candles and presented Tammy with blessings, and Tammy lit a candle for Shani:

My candle and blessing to Tammy

Tammy, your depth of strength and courage has helped you get through difficult times.

Life isn’t always easy, so if you’re finding things tough, be kind to yourself, talk to and stay close to those you love, and don’t give up.

Mummy and I love you very much     

Tammy's candle for Shani

Elooee n’ishmat Shoshana Esther bat Gittel Rahel v’Shmuel Leib.

For the lifting up of the soul of Shani, daughter of Juliet and Simon.

I’m lighting this candle for Shani whose smile lit up every room. 

May her determination to enjoy life inspire us all.

And somehow, when Tammy spoke at the party later that evening, she found a way to recite this poem to Shani:

My Shining Star

She was my shining star

My little candlelight

She was my bright rainbow

For she lit up my life

She was a tiny soldier who kept up her fight

Until she reached the end

She is still my sister

Still with me

And although she’s gone

Her memory lives on

In all of us here today

In every moment, every way

She will stay with me

Through night and day

Through dark and light

Through love and hate

She is an inspiration to us all

To live your life, however small

So the Bat Mitzvah was tough 

but it was also awesome, joyous, magnificent

a time to say that you can grieve and yet fully live in the same life

especially with the incredible support of wonderful family and friends

We gave the weekend balance and made sure that Shani was present and that we were as prepared as we could be

but the joy came from everyone around us.

Thursday 29 November

My birthday.

Not that I was expecting much following hard on the heels of Tammy's Bat Mitzvah.

I received a few cards and presents and the chance to work from home and have lunch with J which was lovely.

During the morning, I was on my own in the house and I began to think that this was a lovely, simple way to enjoy my birthday.

And then the floor gave way (metaphorically)

and the hole in my life opened up

my soul tore open

and I cried

and I cried

like i hadn't cried for months

I raged with tears

the dam burst

the flood gates opened

I was nearly washed away

but i must have tied myself to the side of the river just in time

for I found a way to rise back to the surface

I walked into the garden

and breathed

I cried again a couple of weeks later when I went to visit Shani in Bushey cemetery.

It was the first time that I had gone to see her on my own

but somehow that felt tempered by the fact that it was public place

you cry but you don't rage with tears

that I save for my birthday

Saturday 8 December

Chanukah

The fifth verse of the Chanukah song Mo'atzur is the one that describes the Chanukah story so it feels like the one that everyone should sing.

Last year however we didn't sing it as it talks about 'the miracles of the Shoshanas' - it used to be my Chanukah prayer for Shani but now it's another reminder of what's missing during this most child-oriented of Jewish festivals.

This year we tried, on a night when the four of us were together at home, and we cried, but we managed to sing it together

without Shani.

There is an article published by a woman called Rena Ariel whose daughter Hallel was born on Chanukah but killed by terrorists in Israel when she was thirteen.

Rena describes how somehow she has come to see the candles of Chanukah as providing light in the darkness and that her daughter's memory can hopefully do something similar.

It's an inspirational thought from a woman that's been to hell and back and is trying to work out whether and how to live the rest of her life. 

It's exactly how we try and think about Shani.

Let her memory be for a blessing.

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.