Bitter

Sunday 9 April 2023

Pesach (Passover) is the festival of freedom, the time when we remember the foundational story of hope that was the Children of Israel being freed from slavery in Ancient Egypt.

Strangely, we are told to experience the retelling as if we personally had left Egypt or even as if we are still leaving our own Egypt. We recount the story of the Exodus and we talk about others telling the story but we also imply that we are not yet free and that only next year in Jerusalem will the story and our freedom be complete.

I think that provides a message that although there is maror (bitterness) in all of our lives, we can work towards a future with hope where we overcome our maror or at least learn how to balance it with joyous times.

After six years, it's still so hard not having Shani with us, not seeing her smile and laughter lighting up the room, her determination inspiring us all.

It's around now that we would have been celebrating her Bat Mitzvah, surrounded by her friends and ours, watching her dancing, singing and having the time of her life, stubbornly refusing to slow down, until it all got a bit much for her and she had to stop in happiness and exhaustion.

Instead we had our wonderful family with us for an afternoon of chatting, stories, lighting candles, and painting stones in Shani's memory, decorating them with rainbows, hearts, sky, sea, piers and beach huts, in Mum's words 'united in transforming pebbles into works of art by imagination and love, to rest with Shani, memories layered between stones'.

With the message of hope from Pesach, we can reclaim joy by painting on a Sunday afternoon, storytelling and singing on seder night, and enjoying future celebrations with family and friends, remembering Shani and living life alongside that memory.

Secondary school

Sunday 02 October 2022

This should have been Shani's first term at secondary school, in all likelihood at Immanuel College.

When we took our eldest to uni last month, we should have still had two children at secondary school and there should still have been four of us having dinner the following evening.

But there wasn't.

And that has been really difficult to get through.

There's been a hole in our home for the past five and half years but now it looms larger, it is more apparent, it is even more obvious that Shani is missing from our family.

We held our Shine for Shani Football Marathon on 11 September and we had a lots of kids, both boys and girls, playing football. Perhaps Shani would have had a go, or at least helped with her sister's wonderful charity bake sale alongside the matches.

Instead we reflected on the way that Shani's determination aligned with the effort and drive of all of the wonderful football players, and mentioned her magic smile and her love of life when describing the amazing positive community feeling that we all felt on the day.

Shani is, and always will be, the force and the inspiration behind all of our charity events.  

Over the Jewish new year last week, we read the Torah stories of Ishmael and Isaac. Given that Rosh Hashana is supposed to be the anniversary of the creation of the world and mankind, it is strange that we don't read the very first part of the Torah, 'In the beginning ...', the creation story itself. Instead we go for the birth of the sons of Abraham and Sarah, the sons that were so unlikely given Sarah's many barren decades, and that both parents laughed about when told that they would yet bear a child. But have a child they did.

The point being made in reading these stories is that in Judaism it's children that are at the center of our universe, the focus of our love and devotion, the purpose of creation. 

It reminds me just how lucky we were to have Shani in our lives for (nearly) six years, how precious that time was, how fragile all of our lives can be, and how important it is to cherish every moment possible with those that you love.

Happy New Year.

Crying sometimes

Wednesday 01 December

Last Friday morning I woke up feeling pretty low, and I cried.

I cried because I felt like crying

I cried because I realized that Shani was gone

Maybe I cried because Chanukah started on Sunday and we were getting together as a family to spend a lovely afternoon together and laugh and smile and make some more memories that Shani will never have.

Maybe I cried because it was my birthday on Monday and I wouldn't get a hand made card with Shani's name on it in big scrawly writing or a birthday hug and a smile that melted your heart

Or maybe it was just the darkness of an early winter morning, cold and miserable, that set me off 

But I cried

I don't cry often about Shani anymore

I sometimes feel low but more often than not I feel fine

There are songs that will set me off

Rule The World, I Can't Find My Way Home, Magnificent, Let it Go, anything by Big Time Rush

There are times that make me sad 

saying the priestly blessing for Shani on Shabbat, 

singing about doing miracles for the Shanis at Chanukah

when the Cohanim bless the community and I stand under my tallis prayer shawl without a child

praying for the future and asking for Shani's forgiveness for the past 

plus the obvious ones 

And there are reminders of Shani

a rainbow appearing

the beach at Hove

seeing a happy, or stubborn, five year old girl

GoGos (there are some lovely videos of Shani discussing the relative merits of different GoGos in her collection)

And maybe that's the way life is now - a balance of living and grieving, knowing that there will always be times of low and sad looking at a picture of Shani and missing her terribly, times of crying about the rent in my soul that will always be present, times even of despair when the gross unfairness of it all rains down and there seems to be no way out.

But there are more times of light and happiness, and sometimes that includes memories, anecdotes and stories of Shani, smiling at the way she used to smile, laughing at something that made her laugh, or just enjoying talking about her with loving friends and family.

I guess Shani's rainbow appears both to remind us of the wonderful girl she was and the wonderful but oh so short life she had, but also to pick us up when we're down and when it's time to do a little more living.

I might go and have a little cry first though.

-----

By the way, at our family Chanukah gathering, my wonderful and talented sister gave us all Shani boxes - ceramic boxes that replicated a gift that my niece had made for Shani when she was four: 

a coloured-in wooden box with pasta and shells and beads stuck to the side, a present (my sister reminded us) of which Shani had said 'that's exactly what I wanted!'. 

A magnificent moment when together as a family we all thought of and loved Shani

And I didn't cry.

Na'aseh Nes L'Shoshanim

 

A Miracle for the Shanis

The late, wonderful Rabbi Jonathan Sacks, in his book 'Morality' published earlier this year, distinguishes between ambition and vocation. 

The former concerns the desire to personally get as much from life as possible whereas the latter, the Jewish and moral approach to meaning and fulfillment is to ask, as John F Kennedy almost did, not what you want from life but what life wants from you.

What are you here to do?

For me the answer lies in three words that we sing in the final verse of the joyful Chanukah hymn Ma'oz Tzur, three words that I've talked about before and that take me back to when Shani would be smiling and joking with us at Chanukah time, singing her primary school songs about yummy doughnuts, spinning dreidels, and marching Maccabees. 

The three words are na'aseh nes l'shoshanim, they round off the story of Chanukah as it is presented in the song and literally translate as make miracles for the roses, where roses are used as an allusion for the Jewish people.

However, with Shani's full name being Shoshana, the Hebrew words for rose, the text can also be translated as make miracles for Shani, and as such I would use it as a personal prayer for Shani, for her health and for her miraculous survival.

Since Shani died, I had found it difficult to sing without feeling desperately sad and let down, as if the words and prayers had failed me, they didn't work, they lied, there was no miracle. 

But I've now realized that there is another way to read the translation that provides hope rather than despair, light rather than darkness: roses is plural and so the song is actually asking for miracles to be done for all of the Shanis, for all of the children like Shani, for all of the children with pulmonary atresia, or with life-threatening heart conditions, or that are very ill in Great Ormond Street Hospital, or that are likely to die way before they have any right to.

Somehow, by looking at the words in a different way, they become instead of a failed prayer, they become a mission for hope, a call to arms, a chance to save children's lives and make the world a better place, a vocation.

A way to provide a Chanukah light against the darkness: to Shine For Shani.

A hope beyond hope.

Hope Beyond Hope

I've written a few little ditties in my time, including one about my children, which is still to painful to sing, and I've been struggling for a long time to find a way to write lyrics that talk about the way that I've felt since Shani died. 

Now I'm no Eric Clapton or Gary Barlow but the concept of hope beyond hope inspired me to put some words and a tune together that perhaps might also be read in a way that gives other people hope and strength to find a way forward in the face of their difficulties and, God forbid, tragedies. 

The words are below and if you don't mind listening to my voice there's a link to a recording so that you can hear the tune. 

I hope that it brings you comfort whenever times get dark. 

Hope Beyond Hope 

When all was lost, when I was broken I was torn

When the night rolls in, and it’s too long ‘till the dawn

When you’re all alone, and there’s no saving grace

Hang on my friend, there’s a way out of this place

The sky can still be blue

Flowers always bloom beyond the storm

I’ll be there for you

Reach for the hope - even when it’s gone

When the darkness falls, and I’m drowning in my sleep

When I think of her, and I smile until I weep

When the rain descends, and you’re cold through to the bone

Somehow life goes on – you’re not on your own

I see her smile, I see heaven in her eyes

And I look again, but no, however hard I try

The world will turn, filled with happiness and tears

And through it all, the rainbow still appears

The sky can still be blue

Flowers always bloom beyond the storm

I’ll be there for you

Reach for the hope and don’t let go, even when it’s gone

Breathe

Tuesday 15 September 2020

Breathe, breathe in the air
Don't be afraid to care
Leave but don't leave me
Look around, choose your own ground

For long you live and high you fly
And smiles you'll give and tears you'll cry
And all you touch and all you see
Is all your life will ever be

Breathe, Pink Floyd

One thing that Shani often found difficult to do was something that we all take for granted: breathing.

On average, we manage about a billion breaths during a lifetime but how many of them do you actually notice?

Shani lived for years with only 75% of the 'normal' amount of oxygen in her blood, laughing and smiling, shouting and stropping without even realising that anything was wrong. If we suddenly had only 75% oxygen saturation we'd be struggling to breathe, and probably panicking.

So, although she didn't make a big deal about it, Shani's breaths were special.

For a couple of years of her short life, we had three large oxygen machines in our living room taking in air, filtering it and pumping pure oxygen into Shani's bedroom all night every night to guard against the possibility that she might not have enough oxygen to breathe with whilst she was asleep and unable to let us know. 

Three oxygen machines is a lot, especially for a small girl, and they came with large amounts of plastic piping that threaded around our house to get from downstairs up to her bedroom.

Every so often the oxygen company BOC would come around and check that the machines were working properly and that the tubing wasn't damaged - an important service for what was essentially life-saving technology.

Towards the time of her final surgery, it was clear that Shani was finding it more difficult to breathe. She became lethargic and wouldn't be able to move around so much: we'd have to carry her upstairs to bed and she wouldn't go far outside without her wheelchair.

Something so simple and fundamental as the way we breathe just didn't work for Shani.

Of course the way that the coronavirus attacks the respiratory system, with shortness of breath being one of the hallmark symptoms, means that hundreds of thousands of people around the world have been finding breathing difficult and even painful. 

I think it has focused a lot of minds on the breath.

And by doing so, we might come to value our breath and to realise how important valuing breath can be to our lives, our well-being and even our prayers.

Taking time to think about how it feels to breathe, 

to be mindful of the effect of a breath on your body, 

aware of every little sensation, 

the way that every part of your body reacts to the breath, can lead to great benefits: 

bringing you into the present, 

providing a better connection with your own body, 

allowing you to let go of difficult thoughts and tension, 

and helping you to live with what is happening rather than it slip away day by day.

Rabbi Rafi Zarum (from London School of Jewish Studies) recently wrote a short article on how the breath is so important to this week's Rosh Hashana service (the Jewish New Year).

One of the most important rituals on Rosh Hashana is to hear the Shofar (the ram's horn), the wake-up call to action for the year ahead. It's hearing the Shofar that is the important part - hearing not seeing or doing. And hearing the Shofar essentially means hearing the sound of a breath blown and amplified by the Shofar. It's a breath that we listen to and use to remind ourselves that in the story of Rosh Hashana, the anniversary of the creation of man, mankind was created by God literally breathing life into the first, Adam. 

And as we hear the sound of the breath from the Shofar we are reminded that we can use our own breath to reconnect with the world around us and perhaps to the Divine beyond. When prayer or life makes it impossible to hear, just pause and breathe.

May you all be blessed in the book of life for a year of health and happiness.

And when the Shofar blows, I'll be thinking of you Shani xxx

Shana Tova

Father's Day

 Sunday 21 June 2020

Today was a tough Father's Day.

I had a dream about Shani last night.

I was driving a van on my way to an outdoor swim with a friend who for some reason was sitting in the back. 

I turned round to talk to him and Shani was there as well.

It's a rare occasion that I dream about Shani and rarer still that we actually chat.
She looked like she had just got over chicken pox and for some reason she thought my mate's name was Lawrence (it wasn't).

It was lovely dream - I even had a chance for a hug.

But then I woke up and the realisation flooded in that all was an illusion.

And yet, there is something comforting in knowing that it's still possible to create new memories of Shani, even if they didn't happen in reality.

She's still there somehow, in my mind and in my dreams.

Of course, any comfort from dreaming of Shani is then replaced by new loss and grief as I realise that it's just a dream-hug, rather than the real thing, this Father's Day.

Birthdays and the coronavirus

Sunday 5 April

Today Shani would have been nine years old. 

On a lovely day like this with the sun shining, 

a clear blue sky, 

the birds tweeting in the trees,

and all of us in corona lockdown, 

the five of us would probably have had a birthday party in the garden 

with lots of presents, 

some silly games, 

music from Frozen and Big Time Rush, 

party hats, 

some white ice cream and some pickles, 

and as many as possible of Shani's friends and family joining us via zoom, house party or maybe just on an old fashioned facetime call. 

Instead we cry. 

We think of her radiant smile. 

Her infectious giggles. 

Her thumb-sucking, teddy-cuddling and telly-watching.

Her cuddles and kisses. 

And we cry. 

We watch videos of Shani dancing at parties (but only before all the guests arrived!), 

cycling in our front garden, 

taking part in nursery sports day, 

playing and smiling on holiday. 

And we laugh and we cry. 

We think of what it would have been like to be nine year old Shani during the coronavirus. 

How would she have coped with lockdown?

With not seeing her friends or teachers or family?

With not going to shul or school or anywhere?

With sitting on the sofa all day watching Despicable Me and Victorious?

(She'd be fine with the last bit!)

Would the community nurse still be able to visit every week to check her sats?

Would check ups, tests and minor procedures be postponed as GOSH priorities major surgery and coronavirus patients?

We think of what it would be like for us, and how scared we would have been at the thought of Shani contracting Covid-19, when she was so vulnerable and got out of breath so quickly anyway, and we think about the children like Shani who are in that situation right now. 

And we feel helpless. 

Helpless in the face of an invisible virus. 

Helpless to protect others. 

Helpless whilst we have room to spare and others do not. 

Helpless whilst health professionals and supermarket workers basically risk their lives to keep us safe and keep the country fed. 

And I cry.

Life at the moment is scary for so many people. 

For those fragile heart children for whom life is a constant battle, it's now doubly hard: having to worry about isolation and a potentially deadly virus.

Or perhaps, are those families able to live with the extra risk, and carry on making the most of every day having already learned that every day and every moment is special?

Realizing that now is a time where we are forced to spend more time with our nearest and dearest and that maybe there's a small blessing in there somewhere?

And maybe for all of us, there's something in awakening the realization that many things that we take for granted in this crazy world aren't necessarily there for ever. 

And that there are opportunities too in the new way of the world. 

Being kind to neighbours. 

Helping vulnerable strangers. 

Reconnecting to friends and family. 

Slowing down and appreciating nature. 

As you can tell, I get very mixed up at the moment when thinking about Shani. 

But whatever the risks and challenges, I'd give anything to see her again,

to hug her close, 

to hear her chatting, 

to read her a bedtime story, 

to kiss her goodnight. 

Happy birthday Shani. 

Love you forever,

Daddy x

Ten years

Tuesday 31 December

As the decade draws to a close, we tend to look back and review what's happened over the past ten years.

Often this is in terms of the best films, TV, books, sporting events and political moments, and there's always some thoughts given to the wonderful (and some not-so-wonderful) people that are no longer with us.

Shani was born on 5 April 2011.

It's a very weird and unpleasant feeling to think that ten years ago, at the start of 2010, she was not even conceived. 

There were four of us then, and there are today.

From the outside it may look like we are just four people that are ten years older than we were in 2010, but we have individually and collectively been indescribably transformed for the better by having Shani in our family.

The wonderful memories that we have, the way it's changed our approach to life, and our desire now to help save other heart children in a way that we could not help Shani.

She burned so brightly,
a light that lit up so many lives,
her giggle made us laugh so often,
a smile that brought joy to so many rooms.

She wrapped us round her finger,
bossing her family and friends,
she left us with such wonderful memories,
and rainbows in the sky.

As Counting Crows put it: it's been a long December, but there's reason to believe that maybe this year will be better than the last.

Wishing you all a very happy 2020.

Simon

Resilience, insecurity and joy.

Monday 30 December

It's a slightly odd time to be writing about the Jewish festival of Succot (or Tabernacles) given that it takes place in September or October, and is very much Autumn festival associated with the gathering in of the last harvest rather than surviving through the depths of Winter.

But maybe there is something to learn from Succot during the dark days and nights of January and February that lie ahead.

After all, Succot is the Jewish festival of resilience, insecurity and joy.

It felt to me this year that it encapsulated the continual struggle for balance
grieving and living,
trauma and growth,
despair and joy.

The central object is the Succah: 
a temporary, 
incomplete, 
fragile hut 
that we put up in our gardens for the week, decorate and, weather permitting, enjoy sitting in for the odd meal.

It reminds us how our lives are transient and so delicately poised,
how the simplest moments can be the most beautiful,
how change is the only constant,
how every day must be seized and how every opportunity must be made the most of,
how there but for the grace of God go I.

And it reminded me of the pictures that Shani used to make to decorate the Succah.

In his introductory essay to his Succot Machzor (prayer book), Rabbi Jonathan Sacks discusses Kohelet, a biblical book that we read on Succot and which, tradition has it, was written by King Solomon, the king that had everything: vast wealth, incredible intellect, the builder of the Temple in Jerusalem, and yet who wrote a book whose central theme seems to be 'futility, futility, all is futility'.

As Rabbi Sacks says:

Implicit in Kohelet's life is a story about Solomon's life as a search for security in terms of what we have, what we own, and what we can control. But Succot tells us why this is a false quest. Because you can live in a hut with only leaves for a roof, exposed to the wind, the cold and the rain, and still rejoice.

And it is joy, not monumental architecture, that defeats the fear of death, because it lifts us beyond the self: joy is something that we share with others.

To know that life is full of risk and yet to affirm it, to sense the full insecurity of the human situation and yet to rejoice: this, for me, is the essence of faith.

Judaism is no comforting illusion that all is well in this dark world. It is instead the courage to celebrate in the midst of uncertainty, and to rejoice even in the transitory shelter of the Succah, the Jewish symbol of home.

And to me, this becomes a wonderful guide to living in a world of grief, particularly grief for a little girl whose magical smile brought so much joy to so many people in her oh so brief life.

Being resilient is about balancing both grieving and living in times of tragedy, and finding ways of bringing joy into life even when it has no right to be there, and even when it can sometimes be really painful to do so.

Joy helps us share the burden with friends and family, and even to forget it for a little while, or at least to help us remember that life goes on.

The Hobbit or There and Back Again

Wednesday 11 December 

Every year, Great Ormond Street Hospital Children's Charity hosts An Evening of Thanks for the parents of Brighter Future Funds set up in memory of their children.

Juliet and I first went two years ago and find the Evenings to be both emotional and inspiring. 

The first time was actually the first time that we had gone back to GOSH since Shani died, and we were really unsure about whether it was going to be a good idea.

But GOSH put together a very special mix of speakers and you leave with a real feeling that you are not going through this on your own, that wonderful work is being done by the hospital, and that GOSH is genuinely grateful for the fundraising being done on its behalf. 

A few words are usually said by the Chair of the Charity, 
there is a reading by a British actor from a book associated with GOSH, often Peter Pan or something by Charles Dickens,
a researcher from GOSH describes the advances that they have helped to make in an area of pediatric medicine or surgery, and the children's lives that they've improved or saved as a result,
a chaplain or a member of the hospital's pastoral team leads us all in a beautiful ceremony in which we each light a candle to remember our loved ones and listen to some words of comfort and hope,
and parents of one of the children that we're remembering tell the story of their child, how they came to be fundraisers for GOSH, and what they have been doing to raise money.

This year the parents were us.

Lily from the GOSH charity thought that the way we spoke at the Pulse Challenge was good enough to ask us to speak.

We were honoured and not a little daunted but up to the task.
I think that we're now past the moment where talking in public about Shani or about raising money in her name is in the 'too hard' box but that doesn't make it easy either!
Especially when you're talking to other people who have been through a similar level of trauma and despair as you have - you don't want to let them down.

I think that I was properly nervous for about two days beforehand.

Come the evening though, I think we did alright.
People said some very nice things to us afterwards, including the evening's celebrity reader, the Hobbit himself, Martin Freeman! He came over to me to shake my hand and thank me and Juliet for having the courage to say what we did, and to let us know that he was really moved by our story.

In case you want to know what we said, here it is in full:

[Simon]
It’s a real privilege and honour to talk to you this evening about our daughter Shani, the Brighter Future Fund that my wife Juliet and I set up in her memory, and how we have so far raised over £100,000 for GOSH.

It’s not often that you get an opportunity to talk to a group of people that can truly empathise with the tragedy and trauma that we went through and who, equally, have a desire to build something life-changing, life-affirming and life-saving out of the ashes of that despair.

Our hope this evening is that in some small way our story can help and inspire you to find the strength that you need to help the children of Great Ormond Street Hospital, and, perhaps, to provide you with some ideas that we can all use to raise even more funds.

So let me tell you a little about our little girl, Shani, born on 5th April 2011 in Barnet Hospital, North London as a seemingly perfectly healthy 10lb baby.
It was a routine check just before we brought Shani home that picked up a heart murmur, and we were referred to GOSH for a scan a few weeks later.

The scan revealed that Shani was a bit of a miracle baby.

She had what she came to call a ‘magic heart’, but Dr Graham Derrick our consultant called it pulmonary atresia with ventricular septal defect and major aortopulmonary collateral arteries. I always preferred ‘magic heart’!

Our baby had grown in utero without the artery linking her heart to her lungs and with a large hole in her heart. Somehow in the womb she had grown extra arteries connecting to her lungs to ensure that she received some oxygenated blood.

Miracle though it may have been, it was not sustainable, and Shani was going to need multiple major open heart surgeries – she had the first when she was just a few months old to create a synthetic valve in her heart and use her extra arteries to connect it to her lungs.

Most people have an oxygen saturation level, the level of oxygen in the blood, of 95-99%. Below about 90% means you’d need additional oxygen support. Shani, even after surgery, had sats of around 75%.

Shortly before Christmas 2012, when she wasn’t quite two, Shani went into GOSH with heart failure. On top of her other issues her heart had decided to stop pumping properly. She was in Bear Ward for two weeks until New Year’s Eve and we saw the best of what Great Ormond Street can offer in terms of the care that we were given and the smiles that everyone puts on children’s faces over Christmas time. We’re from a Jewish family, but you can’t beat a bit of tinsel and a visit from both Olympic cyclist Victoria Pendleton and a snowman!

On Thursday 20 December, we were told by our consultant that Shani was not going to make it: that she wouldn’t recover from heart failure. Yet, with help from doctors in Israel, Shani was put on an array of heart medicines that slowly got her heart working enough for her to return home and to grow into a gorgeous, funny and rather bossy little girl.

Over the next four years, she visited Great Ormond Street Hospital often for multiple catheter procedures, her case was seen by the world’s best paediatric cardiologists, and her own nurse came to see her every fortnight to check her oxygen levels.

During that time, we got to know Dr Derrick and the nurses on the Walrus day ward well and realized the special care and attention paid by GOSH nurses and doctors to the children in their care – it felt like Shani was their special little friend!

And their expertise was epitomised by the time that one of the senior sonographers recognized Shani from the scan of her heart rather than from her face! 

Shani grew into the kid with the sparkly blinged-up wheelchair and the magic heart that didn’t work properly. She struggled to climb the stairs or walk down the street and she would scream until she was literally blue when dropped off at school but then spend the day perfectly forming her letters, chatting to her teachers and making wonderful friendships. 

Shani was a fan of tweenage TV programmes like Big Time Rush, played Lego in her room with her sister Tammy, and giggled hysterically when her brother Joel woke her up. 

When she was five, Shani stood up in front of her whole school to tell everyone she was brave, not because of her heart condition but “because she didn’t run away when she saw a big dog”. 

She was the girl with the silver swirly dress who tried to steal the limelight at the start of Joel’s Bar Mitzvah party but begged to go home half way through, utterly exhausted. 

The girl who came third out of three in her sports day race but was so proud and was treated like Usain Bolt by her school mates and teachers. 

Whose eyes shone when we lit the Chanukah candles and sung the songs she learned at nursery. 

We knew she was fragile but we somehow also thought she was invincible. 

But by November 2016 Shani was starting to find it harder to breathe and in the following January, aged five and three quarters, Shani had further, complicated, open heart surgery. 

She was in intensive care at GOSH for over two weeks. She never woke up. 

Through the hell of the following days, weeks and months, it was the support and love from our wonderful family, friends and Jewish community that helped us stay afloat, and it was the need to be strong for our older children Joel and Tammy that pushed us to slowly build a semblance of routine and normality back into our lives, but, as I imagine many of you also found, it was the inspiring idea of GOSH’s Brighter Future Funds and our need to find a way to make a blessing out of Shani’s memory, to make something good out of something so terrible, to help save other children where Shani can no longer be saved, that led us to start fundraising, as Juliet will tell you.

Tammy put it like this in one of her poems ‘My Shining Star’:
She is an inspiration to us all,
To live your life, however small.

[Juliet]
Two years ago, I sat where you are sitting now. To be completely honest I was wondering what on earth I was doing there, surrounded by strangers, back at the hospital, just a few months after Shani had died. In fact, I sent a miserable photo to my two best friends clutching a glass of wine and looking morose! But something clicked as the evening progressed – it may have been the wine, or meeting the lovely Jason Isaacs or the very special candle lighting moment – and I actually felt changed. 

Looking back I can now pinpoint the moment, and it was none of those I mentioned, but it was when two parents, just like us, stood up and talked about the loss of their child, James, and how they used his memory to inspire them to make a difference. Halfway through the speech, James’ mother started to cry and there was a moment when it seemed like she could not continue, and who could blame her. Then all the parents in the room started clapping and that support and unified feeling gave them the strength to finish their words. That was the moment Simon and I realised that with Shani’s Brighter Future Fund we were able to become part of something special.

A few months earlier, my friend Jude had an idea. She wanted to take part in the Shine Night Walk and she asked me and some of our female friends if we wanted to join in. We could train together and raise money and we could do it in Shani’s memory – it was Jude’s idea to call it Shine for Shani. Some of the friends had been touched by cancer and all of us were feeling the loss of Shani. So we joined it all together and fundraised for both Cancer Research and Shani’s Brighter Future Fund.

For me personally it was a very important project – our weekly, ever growing training walks gave me time out with my friends as well as a reason to get outside and exercise. And I took the reins for the publicity too – writing press releases, using Facebook to boost our fundraising and managing our Just Giving page . Astonishingly in the end the team of 20 ladies raised £28k. 

Simon and I had many discussions after this about how we could do something more in Shani’s name, and the Evening of Thanks came at just the right moment. We realised that we wanted to do something big and life changing in her memory – just as Shani had changed so many lives herself. And we feel that we are very lucky, we have a hugely loving and supportive extended family, a group of friends by our side in good times and bad, and a wonderful synagogue community that forms a big part of our lives. How could we build on this, find something that Joel and Tammy could also engage with and be part of the special place that is GOSH?

With the help of the team at Great Ormond Street charity – first Marisa, then Jonathan and now Lily, who has been a brilliant link with the hospital, we selected a cardiac research project, gave ourselves a large fundraising target of £70,000 and threw ourselves and everyone we knew into our newly formed Shine for Shani charity. Our first project focused on heart transplant outcomes, looking at the effect of transplanting T-cells from the thymus to reduce rejection of the transplanted heart as a child grows older and we even visited the lead researcher Prof Tessa Crompton to understand more and had a fascinating visit to the laboratory at the GOSH Institute of Child Health. 

Friends and family took on individual fundraising challenges for us – including mini-mudders, a sponsored screen silence, a roller-skating challenge – and Shani’s school also supports our charity every year now with a sponsored event, like their Chopsticks Challenge. A number of people asked for donations to the charity in lieu of gifts for birthdays and special occasions, including my own Dad’s wedding. And we had great support from a Lodge Ladies Night, raising over £6k. For her Bat Mitzvah, Tammy wrote a poetry book called a Rainbow of Rhymes and raised over £2000 selling them.

We are a family of doers – and we were excited to organise our own events too. Inspired by our football-loving son, in summer 2018 we organised a football marathon. A 12-hour 5-a-side match with people signing up for half hour slots throughout the day. We had teams of adults, boys and (a few) girls and, despite it pouring for part of the day – a buzzing amount of spectators. Alongside it, our daughter and 2 friends ran a 12 hour bake sale and a raffle, and in all we raised over £10,000 that day. We boosted our fundraising with a brochure of corporate sponsorship and a whole team of friends were involved from start to finish.

Again the publicity and organisation took lots of time and energy, which was good for our emotional health and wellbeing – I stepped out of my comfort zone and even went on a radio show to promote our event. But most importantly, we were all talking about Shani, all the time, and not only when we were feeling sad and tearful. We love our physical challenges, walking, running, football – something about exercising our own hearts connects so closely with what we want to do to help GOSH children have healthy hearts too and Shani’s belief that she had a “magic heart”. 

Our Pulse Challenge, which was the big event we did this year, encapsulates that. We wanted to build on the Shine for Shani walk that we did just after Shani died, but to make one of our own – an ambitious idea (as we soon realised once the planning was underway). Again we assembled a team of friends – to plan the route and starting points, recruit marshals, design t-shirts, organise a finish line party, pull together a brochure of corporate sponsorship, get raffle prizes and attract 100 walkers and runners. We were so proud that we managed to achieve those numbers and more. The 20 mile walk started from GOSH back to our hometown of Borehamwood, via a beautiful scenic route. Lily was there at the start to see us off and we had a massive team of marshals along the way to keep us on track. We also had a group start at 13 miles and a large number of families and youth (including Joel and Tammy) starting at 5 and ¾ miles, chosen to reflect Shani’s age when she died.

It was a special day with a wonderful community spirit, the sun shone, we only mislaid a couple of walkers (we found them again!) and most importantly we raised over £45,000 pounds – about twice as much as we had expected, with a huge part from the sponsorship pages set up by the participants. Our plan now is to take the templates from these events and use them for further football marathons, and Pulse Challenges, as well as a dance/exercise event, keeping with our healthy hearts theme for raising money for cardiac patients. 

[Simon]
So what have we learnt from our fundraising efforts so far:

Appreciate all donations and fundraisers – we loved what last year’s parents said at this event about how they always try to be there whenever a friend does something for their son’s Brighter Future Fund and we aim to do the same wherever possible.

Find a fundraising niche – choose events you and your family really connect with.

Build a team of people around you – it doesn’t have to all be on your shoulders, and target people outside of your immediate circle so you’re not always asking the same people for money. And don’t be shy about asking business for sponsorship or donations – people rarely say no!

Lastly, use these events to create a beautiful, positive, community spirit around the memory of your precious child, which can inspire you to do more, helps the grieving process, and reclaims some small amount of joy and hope out of deep tragedy and despair. 

Thank you so much for listening and thank you to GOSH for their support and for inviting us to be part of this very special evening.

The importance of importance

Saturday 28 September

Rosh Hashana (the Jewish New Year) is a time for us to reflect on what is really important in our lives.

What do we value? 
What are our ideals?
What gives meaning to our lives?
What would we regret not doing?
What should we spend our time doing?
What would we miss most if it wasn't there?

What are our goals, our vision, our purpose?

If we take the time to reflect on what is important and if we articulate it in our own minds and our own way, we can take steps to realign our world and our space and our lives to do more of what we value so highly.

But why is importance so important?

Dale Carnegie in How to Make Friends and Influence People talks about how at the core of his ideas, his central message of making connections with other people and working well together to achieve common goals, is making the other fellow feel important.

It's more than simply understanding another person's viewpoint, their desires and motivations - 
by making someone feel important you elevate them, you let them know that you are on their side and feel their worth: 
they become special to you and to themselves.

They carry import.

And perhaps when we are thinking about what is important to us, 
we realize that above goals and ideals and values, 
above vital but abstract ideas about the world and our place in it,
are the people in our lives that make it worth living.

Who is important to us?
Who has and does inspire us?
Who do we look up to?
Who do we want to spend more time with?
Who would we miss if they were gone?

Who would we tear our soul apart for to bring them back?

Who do we cry for?

This is the third Rosh Hashana since Shani died.
The third time that I've had to face life without her as part of an annual reckoning of what is important in life.

And each time there is a Shani-sized hole filled with grief and despair, 
a loss of meaning and love and play and smiles and giggles and joy,
a feeling of vast anger and rage at the Divine and the uncaring universe,
of how to continue in the face of such loss,
of drowning.

But, in the last year or two, there has also been a feeling that, without diminishing the grief, we have started in some small way to rebuild and contribute to the world around us, to the lives of other children with serious and life-limiting heart conditions, and in doing so to bring others, friends and family, with us.

And so in that terrible grief there are also days 
of sunshine, 
of wonderful people working together to create a determined community spirit, 
of feeling that we can make a difference and improve lives in the world around us,
of hope.

And that is truly important.

Shana Tova
A happy, healthy and sweet year ahead.

Making a difference

Monday 26 August 2019

On Sunday 8 September, around 150 wonderful people are going to be organising or taking part in the Shine For Shani Pulse Challenge.

A 20 mile walk or run from Great Ormond Street Hospital to Shani's home town of Borehamwood. 

There are 13 and 5.75 mile options as well, with 5.75 miles chosen to remember how old Shani was. 

We're hoping to raise over £20,000 from the event to help save children's lives, 

to help kids with complex and life-limiting heart conditions like Shani had, 

to help them survive heart transplants and lead the sort of fun lives that kids should have - 

filled with the love of friends and family, 

and with the wonder and joy of new and exciting experiences, 

riding a bike, 

opening birthday presents, 

splashing in puddles and paddling pools, 

dressing up as a princess, 

being in a school Chanukah play, 

collecting stones on a beach, 

greeting Daddy when he gets home,

having a story before bed,

of smiling

and laughing,

like Shani did.

The Pulse Challenge has been a big part of our lives over the past few months.

Many amazing friends have given up countless days and evenings to help us organise and plan, to walk and check the route, to cajole and convince people to donate money, food and raffle prizes, and to find marshals and sponsors.

Working with our amazing friends is a reward in itself - we know how much they loved Shani, and we feel blessed that they want to help us create something good and positive out of tragedy and despair.

We visited Shani's graveside last week, it felt right to go and see her in advance of the walk, and to check the Octonauts, pink glass beads, and pebbles from the seaside that sit on her gravestone.

It hurts to visit her grave, it hurts to put so much energy into organising a walk in her name, and it hurts to write this blog,

but it's worth it.

It's my 'option b'.

The other option is to curl up into a ball,
to sink under the water,
or to pretend it's not real, 

none of which allow me to try and both live AND grieve,

to remember Shani and to make a difference,

to feel like there's still something to do.

With Shine For Shani, we want to make a difference to the world in Shani's name.

We're doing well but there is so much more that could be done.

And so many children's lives that could be impacted for good as a result. 

As I mentioned in a blog last year, there is Jewish prayer in the Shema that perfectly sums up what it is that Shine For Shani is trying to achieve for children with difficult heart conditions: 

'With all your heart and with all your soul and with all your might.' Deuteronomy 6:4

I used to say this for Shani in the hope that it would make a difference to her, but for me it has now become a prayer for the children that we are trying to support, that they can have a whole and healthy heart, that they can live a full and vital life, and that they can do so with strength and with courage and with determination.

As Rabbi Tarfon said in the Jewish book of Ethics of the Fathers almost 2,000 years ago: 

'You are not expected to complete the task, but neither are you free to avoid it.' Pirkei Avot 2:21

We're not going to be able to raise enough money to help solve every child's complex heart condition and to enable all of them to live long and happy lives, 
but we can make a real difference, 
and so we should.

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.