You have embraced your sister in extraordinary ways. Thank you for bringing
so much creativity, fun and joy to this new special needs life.
I know it must have been hard to watch your parents try to navigate the early days
after diagnosis. You see, we were both hurting and grieving and sometimes it’s easier
to stay angry than it is to feel the raw pain and reality of Chiara’s condition and what
that meant for her life and our family as a whole.
You have come along to hundreds of hospital appointments and been by your sisters side
through casts for her clubfoot, EEG’s tests for seizures, AFO fittings, neurology
meetings, genetic appointments, speech pathology sessions and many post
operation care visits.
You have tested out all the equipment during trials for standing frames, wheelchairs,
shower seats, specialised car-seats and feeding chairs with a huge smile of
adventure, while I have tried to hide any feelings of worry and anxiety around this
surreal side of the journey.
Most of our family time has been spent in hospitals, waiting rooms, long and
stressful car rides, travel both locally and overseas for intensive treatments. Yes, it’s
been testing and sometimes harrowing but your level of connection, compassion and
awareness to our situation always blows my mind.
You have learnt such creative ways to play as a lot of our time has been taken up by
Chiara’s additional needs – for which there are many. I wish I could give you more
time; my heart sinks a little when I see all the games and toys you have been playing
with quietly by yourself as I’ve attended to Chiara.
When you are sound asleep at night and I’m cleaning up the toys is when it hits me
the most, I wish I could have sat down next to you, taken more time to play with you.
You have included your sister into your world, proudly holding her hand as we walk
you into school. I admire the way you effortlessly respond to your friends when they
ask why your sister can’t talk, or sit or walk.
Grace, you have been blessed at a very young age (although I know you are a wise
soul) to know the value of diversity and resilience. I know these two core aspects will put you
in good stead through your lifetime.
The world may not always be so kind or accepting of Chiara’s conditions and you will
(at some stage) come up against some conflict around disability. People might
make jokes or comments that make you feel uncomfortable or uneasy about
cerebral palsy or the like.
Being different in our world isn’t always easy but it’s what makes us beautiful
individuals of the light. It’s where all the treasures and blessings are hidden, so always
stay true to you.
Grace, I know in my heart you will know how to respond and manage. All I can say is
how proud I am for the love, care and pure acceptance of your sister and this new
life we have.
And when life gets tough – as it will as we all journey through the ups and downs,
please remember you have a rare and precious gift. You have everything you ever
need deep within your heart.
If Chiara could talk, I am sure she would tell you time and time again how much she
loves you. But I’m sure you already know that right, you both seem to share a secret
Keep shining your light fiercely dear one, it’s only going to get brighter and brighter
as the years flow by.
And remember, no matter what life throws at you – there will always be love, beauty
and grace all around you and deeply within you, always.