How Fragile We Are: February 2018

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.

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.

Sunday, February 18, 2018

Poem for Shani

Stone Setting

Tuesday, February 13, 2018

The Last First