Today is World Down Syndrome Day. This post is for my 13 month old son Gus who was born with an extra copy of his 21st chromosome and has Down syndrome.
Gus you are so loved by your brothers, your Dad, and me. You have special moments with each one of us, like when your oldest brother helps you stand and then with your help rows your body forward and backward fast (a favorite at the moment). Or when one of us eats your belly and laughs bubble out of you.
In every way, you are one of us.
You might notice as you get older (as some of your brothers do who look over my shoulder when I am reading to their younger brothers) that when I find words in a story that sound unkind I change the words or leave them out. We have a book some of your brothers like for me to read “The Fat Cat Sat on the Mat”. Even though it has a great rhyme and cute story, I really don’t like reading it.
See, your Nana and Papa have been overweight for a long time and it has ALWAYS bothered me how breezily people throw the term “fat” around. That word to me is full of judgement and a lack of acknowledgment of how awesome they are. So I’ve never liked it.
There are lots of words like fat. Words that are packed with MEANing.
Our lives are about more than words though.
In a very very real way, we - are - how - well - we – love. One of Jesus’ very good friends Peter said: ” Love covers a multitude of sins.” or as I like to think of it: “If we start from a place of love in our heart the meanness doesn’t have a chance to come out.”
We are not perfect people Gus. Sometimes we are not nice to each other. It can be hard to focus on the things we all have in common, like belly laughs bubbling up from explosions of joy.
I was afraid of the unknown when I found out about your extra chromosome when you were so tiny still in my belly. I didn’t know what it would mean. It is such a relief over a year later to realize that you are not a word or an extra chromosome.
You are YOU.
You are valuable and you are loved.