Shani
Named after the
ever-loved and wonderfully single-minded Grandma Janice, Shoshana Jan (or
Shani) was always stubborn.
Stubbornness
runs deep in both sides of her female lineage and thank God that it does.
As most of
you know, Shani had a congenital heart defect called pulmonary atresia, which
meant that she was born with a large hole in her heart and without the valve
that links the heart to the pulmonary artery that takes blood to the lungs to
be oxygenated.
And so, when
she was in vitro, incredibly she found a way to grow and connect two other
arteries to her lungs to provide them with blood.
When Shani
was a baby, she needed to have an operation to link up these two arteries and
fix them to a tiny Gore Tex tube implanted in her heart where the valve should
have been.
Having
seemed to be making good progress, at 20 months old Shani suffered from heart
failure and spent two weeks in hospital trying to recover.
We were told
at that point that she wouldn’t make it, and yet over the next four years she grew
into the beautiful little girl that we all know and love, full of spirit and
tenacity, living and loving life and bringing joy to the people close to her.
She had a
radiant smile that lit up every room, a gorgeous giggle and a cuddle that
melted your heart.
Shani was
never able to do quite as much as those around her but she didn’t seem to see
this in any way as a disability. Instead it was more like a super power. She
had a Magic Heart that enabled her to overcome impossible odds to make the
world a brighter place whilst shrugging off injuries that would incapacitate
the vast majority of people. In fact, one of her doctors recently told us that only
a trained Sherpa carrying baggage up Mount Everest would cope with the low
oxygen levels that Shani had throughout her life.
Shani was in
many ways just like any other five year old girl. She would play for hours with
her Barbies, her Disney princesses and her Lego Friends. She would trundle
around inside on her little scooter and she loved being pushed on playground swings. She loved dancing and showing off her dress at Joel's barmitzvah. When I got home in the evening, if she wasn’t already playing in the bath, she
would toddle into my arms with a big kiss and a cry of Daddy! And she loved
very much to spend time with Joel and Tammy, with her wonderful grandparents,
with her aunties and uncle and with her gorgeous cousins Maia and Lev.
She loved
going to school at Immanuel Prep and had made some really close friends in her
class that took good care of her: understanding when she had to stop playing
and sit at the side of the playground and then sitting and chatting with her
rather than leaving her ignored. I say that she loved going to school – she
loved being in school, getting her to go into school sometimes ended in a
screaming fit with Jules or I often walking away torn between admiration for
her fighting spirit and concern that she was going to do herself a damage!
Last Summer,
Shani took part in school Sports Day. She was in the
pick-up-the-vegetables-as-you-run-along race, and though admittedly she was
given a head start on the other girls, our wonderful girl managed to finish in
the medals, in third place! Might be worth pointing out that there were only
three runners in the race … but that’s not what matters – Shani gave it a go, ran
the whole race, and was smiling about it all day, thrilled that she’d taken
part and that everyone was so proud of her!
Despite all
of this life, two weeks ago, Shani had to go into hospital for a necessary but difficult
operation. She had been slowly deteriorating, her oxygenation and energy levels
dropping and becoming visibly bluer. The operation would replace her tiny Gore
Tex tube with a proper heart valve, which was risky, but it was also very
uncertain how her weak heart would react to the ‘large insult’ it was given (as
one of her nurses put it).
Many of you
will know that there were big complications both during surgery and in the two
weeks following. Initially we thought and believed that Shani was going to
fight her way out of this one as well but it turned out that we were praying
for one miracle too many.
Shani’s
heart eventually gave up the fight and let her leave this world at peace, free
of discomfort, pain and distress.
During that
time, Shani was cared for in hospital by some incredible nurses and doctors,
and at the same time we were immensely strengthened by the support we received
from our wonderful friends, family and community.
On leaving
Great Ormond Street yesterday for the final time, I saw a rainbow over the
hospital. At the same time in Rehov Shani in the Israeli town of Modiin another
rainbow shone in the sky. Perhaps a parting gift from our wonderful little
girl, like a rainbow always with us but nowhere we can hold and kiss, a light
shining in the heavens and a constant reminder of the daily miracles in our
world.
Now I Am
Six, by A A Milne, slightly amended.
For Shani, aged five and three quarters
When I was one I had just begun
When I was two I was slightly blue
When I was three I was really me
When I was four I was so much more
When I was five I was most alive
Now I am (nearly) six I’m as clever as clever
So I think I’ll be (nearly) six for ever and ever
