Last year my wife and I were inducted into an elite group whose members include: Jamie Foxx, John C McGinley, Damon Hill and American baseball star Albert Pujols. There is only one requirement needed, Down’s syndrome.
Our daughter, Chiara Lorraine Love, was born November 27th 2012. Two weeks after her birth she was diagnosed with Trisomy 21 or Down’s syndrome, a genetic condition caused by an extra copy of the 21st chromosome. The day of her birth will forever be engraved in my memory, as will the birth of our first daughter (Amelia), my wedding day and standing in front of 50,000 people as an opening artist at London’s Hyde park. When Chiara arrived we instantly knew something wasn’t quite right, a slight folding under her eyes and slightly thick neck; both common traits associated with Down’s syndrome (DS).
We spent her first two weeks observing every minute detail, our heads tilted this way and that and asking ‘does she have Down’s syndrome?’ and ‘she doesn’t look like she has Down’s today’. After a dozen medical exams, countless internet searches and a lot of tears her diagnosis was confirmed by way of a blood test. It came as more of a relief because now we could get on with doing our job; Feeding, nappy changes, bath time and cuddles.
It took the three of us a few weeks to adjust having a fourth member added to our family. With two babies under two there were now twice as many dirty nappies, twice the amount of baby food and double the amount of love and laughter. We don’t know how Chiara will be affected by her condition, we don’t know what path she will choose to take, we don’t even know what we’ll feed her tomorrow. Although it will probably be cheesy pie from Ella’s kitchen, she loves that shit 🙂 So in some ways we’re still in the same boat.
We take Chiara to various therapy sessions every week to aid in her motor skills, she has physio and we’ve bought a whole host of toys specifically designed to help with her cerebral development. In the last few weeks Chiara has learnt to sit up un-aided and she is commando crawling all over the living room. She’s reaching and grabbing for anything that falls within her area of operation and she gotten into the habit of biting our noses. We play her all kinds of music from Bach and Mozart to Pearl Jam and Led Zeppelin. We always have and always will maintain a positive attitude towards Chiara’s disability and make sure she is afforded every opportunity that every child should get.
Life is a journey and we never know what’s around the corner.