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.