Tuesday 01 September 2015
New School
In December 2012,
when she was not yet 2 years old, we were told that our precious Little S had
only 'weeks or months' to live.
Now, two years and
eight months later, Little S, our amazing stubborn wonder, is about to start
school.
Tomorrow morning she
begins a new chapter of her life and ours.
A proper grown-up
little girl at Immanuel Prep.
She'll have to
navigate through her full school day both emotionally and physically - getting
used to life in 'big school' and all of the new challenges that brings:
playing, learning to read and write, making her own friends, finding out how
the world works, and being independent and creative.
But also learning to
cope with walking to and from the canteen, up and down the stairs to the music
room, across the yard to the tennis courts and school fields, and doing PE.
Things that most 4
year olds would likely manage with ease.
For Little S they're
likely to be quite a struggle.
She'll probably need
her reserves of stamina and perseverance
to tackle some of these challenges but she'll also need to develop her
self-awareness and talking skills to realise when she's done enough and needs
help.
And although we're
only a phone call away and we're there at the end of the day, she'll mostly
have to do this herself.
Which is massive.
But I think she'll
manage.
Maybe it will be
tough to start with but I think she'll work it out.
She'll cope.
And I don't even
think she'll be bothered that she's being treated a bit differently to the
other kids because the school won't make big deal of it and because actually
she'll probably quite enjoy being a bit 'special'!
New Year
A new era for Little
S, and a new Jewish year with Rosh Hashanah less than two weeks away.
This year, as ever,
there's a lot to think about and a lot to be grateful for but I think,
inevitably, I'll be focussing on Little S.
Praying that she
stays healthy over the next year and beyond
Praying that someone
comes up with a plan to help her over the years ahead
Praying that science
can find a way to fix her up once and for all
Praying that she and
the rest of our family can continue to lead 'normal' lives: living, loving and
learning together and figuring out how to become better people
Praying that the
ever present black cloud on the horizon doesn't get any closer
Praying for magic
New Experiences
Talking of magic,
Little S had a wonderful time over the summer: meeting and chatting with Snow
White, waving as Anna and Elsa rode past, spinning around in Lightning
McQueen's cars and the Mad Hatter's tea cups, and watching Mickey and Minnie
and a herd of buffalo in the wonderful Wild West show - we went to Disneyland
Paris!
Little S really
enjoyed three full-on days and seemed to have boundless energy!
It helped a lot
that, due to Little S's heart condition, we were granted a priority pass that
allowed us to jump most of the queues! (as long Little S was with us on the
ride!). It felt like we were on a first class visit to Disney - a truly magical
place and a very special experience for Little S - one that she hopefully won't
forget in a hurry.
Life is about making
memorable memories, and whatever happens in the future we'll have Little S's
smiles at Disney.
New Procedure
So, what's next?
Well, Little S was
supposed to have a procedure last month - a catheterization to dilate or widen
parts of her pulmonary arteries to enable more oxygen to flow between her heart
and lungs.
It's a similar
procedure to the one that she had last November when Dr D dilated her stent -
the GoreTex tube that was surgically implemented in her heart to be the valve that she never had between her heart and lungs.
Last November we
were led to believe that it was a pretty risky procedure but having done it
once, the doctors are much more confident that Little S has the resilience to
cope with a similar cath - they believe in Little S!
Having said that,
she still needs to stay overnight as it's a general anaesthetic and they have
to have an intensive care bed on stand-by just in case they need it.
So we were all
prepared emotionally and logistically until GOSH phoned the day before to tell
us that they had a spate of emergency operations scheduled and there were no
beds available for Little S - the procedure was cancelled and moved back to mid
October.
Which shouldn’t be a
problem but we don’t really want to get cancelled again - Little S really should
get on and have the procedure, especially with the added pressure she'll be
facing once she gets to big school.
And that starts
tomorrow!
