It took us almost one week to name our second daughter. We wanted to show the world that she is someone strong and beautiful; as much as her older sister was. And so, we named our little beauty, “Chiara.” Pronounced Kee-ah-ra, it means “light, clear.”
Our first beautiful child, Amelia, was born fourteen months prior. Having two children so close together was planned; we wanted them to be best friends. I envisioned years of two cheeky children plotting in the back seat of our car, in their matching car seats, giggles abound. I daydreamed about them going to school together, standing by one another, sharing so many happy moments of childhood. I imagined how happy they would be and how that happiness would continue into adulthood.
When I was pregnant with Chiara, I had a sixth sense feeling that she had Down’s Syndrome. We did not test for Down’s. Why? Because not only did Tim and I know it wouldn’t matter, but I secretly did not want to hear or feel other people’s opinions. Those opinions included family, friends, and even more so; the medical community. I had wonderful midwives and doctors, but something in my core wondered that if one of the team knew my baby had DS, maybe they wouldn’t try as hard to revive her if something went wrong in delivery. And so, I kept my secret thoughts to myself, feeling I was protecting her.
As soon as Chiara was born, I looked at Tim and said, “She has Down’s Syndrome, doesn’t she?” “Yes, I think so,” he nodded, holding my hand, assuring. Chiara did not have the typical signs of Down’s Syndrome, and so the midwives and doctors did not see reason to test her for it, except that I insisted.
When we received the results, we cried. We cried because we thought Chiara was not going to be the child we dreamt of; we thought she was not going to be the best friend who we wanted for Amelia. I went through a montage in my mind, of a child not communicating, a child being bullied, a burden for her sister. Fearful thoughts went through my head like a horror film playing—but I was so wrong!
I wish that I could go back and tell my fearful self that day, that worrying was a waste of time! All those thoughts were NOT the reality of Chiara’s life!
Yes, we have made some minor adjustments in our life, like more appointments with support teams (ie physio, speech and language and paediatricians). The support we received from several groups since Chiara’s first month of life, was invaluable. We felt like we were part of something greater.
Until I had Chiara, I was not a mum who joined mummy groups. I didn’t have a burning urge to connect to other mums; I am a native New Yorker and I don’t understand many things here, like the school system for one! I speak very fast, and I am quite career driven, I have been working with luxury fashion houses for most of my life. In fact, I worked Keep in Touch days when Chiara was about twelve weeks old, and I went back to work when she was five months.
I didn’t want to talk about what diaper cream; oops, I mean nappy cream I use or explain that I see nothing wrong with putting a small child in a Burberry swimming costume.
But having Chiara made me take a moment to look around at my community, and appreciate everyone who makes up that community. Everyone has their role; including people with Down’s syndrome. And so, I started talking with other parents who have a child with Down’s syndrome, and I found true friendship and empathy. I have many laughs with these people because we share something so special; we share something that is not always super easy, but always super rewarding. In our community, we have many very cool families who happen to have a child with Down’s Syndrome!
Most importantly, Chiara is indeed the sister and friend that Amelia wanted. They giggle together a lot. And they plot; oh boy, do they plot! I hear little whispers of “Let’s jump on mummy and daddy,” and off they go! The girls argue over toys, and watch Disney films snuggled in duvets; they are typical sisters. They value each other. Amelia tells me constantly how much she loves her little sister. Chiara is slower than other children her age, and Amelia accepts it, and is Chiara’s biggest advocate.
Chiara started mainstream school this year, and it made me slightly nervous. But what I have seen at school, is an extension of what I have seen of our family, friends, and colleagues; acceptance, inclusion, and love.
And that brings me to the main point of what Chiara has made us realise, and I think The Beatles said it too – all you need is LOVE!