Page 59 - MAY_2017
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Dali was born three days before Jaeli’s entering our 8th year listening to the
2nd birthday. She hit all of her milestones Wiggles!
in her first year of life but by the time
she was 13-months old, we knew exactly In February 2016, following Whole
what the subtle eye rolls meant and how Genome Sequencing on our family, we
they evolve. ‘Heartbreaking’ doesn’t do finally received a diagnosis, a genetic
the emotion justice but heartbreaking is reason for all of the symptoms: SYNGAP1.
the only term that feels remotely apt. We A seven letter word that spelt the end of
had learnt a lot about what did and didn’t our search for the ‘Why’. We are more
work with Jaeli but unfortunately the list informed now than we ever have been yet.
was heavily skewed to what didn’t work. We now have something to anchor to. We
We still had no idea what we were dealing feel more empowered than ever before.
with or how to successfully treat it and More connected to our community and
now we had two children with the same grateful for the new connection with our
problems. global Syngap1 family.
We lived under a dark cloud for the first few One of the most unexpected benefits
years. Travelling separately through the of having special needs children is the
stages of grief. Chronic sleep deprivation people you meet as a result. We have
was the norm, we operated in a zombie- been introduced to a world of amazing
like state and for me, temporary denial carers who have helped broadened our
was my saviour. If my work colleagues understanding of life and love. Since
knew what I had to go through every going public with the details of our girl’s
day, every night, every weekend, they too condition, we have been touched by the
would see me as the helpless mother I kindness and generosity of our community
was in every moment when not at work. in helping us raise awareness and funds for
Leading a double life was my emotional research. Our community has surprised us
survival mechanism. It didn’t mean I was with the healing power of ‘social medicine’.
less of a wreck than other mums with People genuinely want to help and it’s
special needs kids, I just limited the time I heart-warming to be the benefactors of
allowed myself to be a wreck. that goodwill.
For those first few years, it was difficult While we are restricted in what we can do
to even fathom the cloud had edges as a family, we have fun together and instil
but once the darkness subsided, a silver a sense of belonging and unconditional
lining emerged. Recently I was hanging acceptance in the girls. Much like other
up the washing watching a 5-year-old parents, we want our children to be happy,
Dali explore her surroundings. She pulled to be heard, to feel fulfilled and to be
the full washing basket down from the connected in their own world.
bench and buried herself in the sheets. It
dawned on me that we get to enjoy that Since 2011, when we first realised we were
age of wonderment when your toddler different, our journey in numbers;
discovers new things for the first time, 2 daughters, 12 symptoms, 4 seizure
entertaining as they explore everything types, at worst – 52 seizures every hour,
around them. That age of wonderment 18 trialled anti-convulsants, 2 diets, 5
with our girls may span a decade. We’re homeopathic supplements, 20 specialists
may 2017 | mychild 59
