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