Yesterday was the first day of Spring. But more joyful for our family, it was the 21st March – World Down Syndrome Day. And that falls two days before an even more joyful event - the birthday of a very special member of our family! To celebrate we are going to do something on our blog that we have never done before – share some music....It’s at the end!
Readers of our blog two years ago just might remember our anxiety around the birth of our fourth grandchild who has Down syndrome. At birth, Dominic had multiple health problems which gave us all anxious days and sleepless nights. But it slowly became clear to us that he was a little survivor! With brave, tireless, relentless and thoughtful support from our son and daughter-in-law, Dominic weathered a kidney operation in the first week of his life, a heart operation about four months later and has endured further multiple medical interventions since then.
These days he’s up and out and about! He’s still connected to oxygen 24/7 but mainly as a means to protect his growing lungs against infection during the winter. He is beginning to say words, he reaches out and calls to us on Facetime chats. Our son even alleges he ‘says’ a particular sound when he sees us. We would love to believe that! But whether or not it’s the case, a phone call with Dominic where we can sing, wave, make signs and talk gibberish together can make our day! Even through the phone screen, Dominic has the ability to connect, communicate and transmit so much love and joy! This weekend we will celebrate his continued thriving as his 2nd birthday arrives.
21st March was chosen for World Down Syndrome day because people with Down syndrome have three copies of the 21st chromosome. Socks were chosen they say, because Downs chromosomes have a karyotype similar to mismatched socks. We don’t really know what a karyotype is! Long before Dominic was born we believed in the importance of remembering that we don’t all need to be the same!
The biggest irony of all this is that when we see Dominic, we rarely think about the ‘different’ label because he is just so much of a person in his own right. When our other three grandchildren were born, we didn’t expect them to be all the same – and they certainly aren’t. Dominic has followed suit. We like what one of the posters says, ‘Love doesn’t count chromosomes’. And it’s true! As his mum reminds us in a celebratory Facebook post with a picture of Dominic: ....’You overflow with humanity. I hope for a humanity that sees and values you and your gentle ways.’
One of the best expressions of how the families of children with Down syndrome feel about them is the song written by Chris Read, a comedian and father of Theo. It was played in April 2023 on a Thought for the Day on Radio 4 by Chris’s comedy partner, Harry Baker. As far as we’re concerned – Chris says it all! Every atom of you is perfect....'
We heard Chris perform this at Greenbelt last year and there wasn't a dry eye. Terrific song, thanks for sharing it.