October is World Down Syndrome awareness month. So I wondered if I should write about it. Perhaps share what is medically involved with that extra little chromosome. But that though would just be a list of facts.
And that’s not our story. That’s not a definition of Oscar’s life.
When I was told at Oscar’s birth that he had down syndrome there was a lot that I didn’t know. All I knew were some very limited facts and perceptions, some of them, to be honest, not very encouraging. I jumped straight to all the moments ahead in life where I thought life would be hard for him. I didn’t know what our lives would look like and I was scared.
So yeah, I didn’t know much. I didn’t know about the low muscle tone or that they start walking later than most babies. I didn’t know about the hospital appointments that would be required and therapy he would need.
But I also didn’t know Oscar.
I didn’t know that he would snuggle into you like a koala.
I didn’t know that his smile would light up his whole face and for that matter whatever room he was in.
I didn’t know he would have a great sense of humour.
I didn’t know that he would love books, baths and balls or indeed that bath would be one of his first words.
I didn’t know that he would love the outside and especially having a swing.
I didn’t know that he would love cheese scones.
I didn’t know that he would have sheer grit and determination and would time and time demonstrate that he’s got this.
And I didn’t know that life would continue as normal, as a family enjoying life and having fun, going on adventures and that having Oscar would make the adventures and our lives even more richer.
I didn’t know joy like this.
I didn’t know love like this.
Today. 21st March 2017. World Down Syndrome Day.
A year ago I think I barely knew that this day existed. I can vaguely remember seeing sweet smiling faces across my television screen. But they weren’t one of my boys. It wasn’t part of my world. Then a mere few weeks later, having just given birth, the words Down Syndrome were spoken about my little baby, the one I had yet to even hold in my arms. As those words swirled around me it felt like my heart broke into a million tiny little pieces.
Since that moment though, it has been a year of discovery. Of learning that there is nothing to fear and that love indeed drives out fear. That there is more hope than despair. More to celebrate than to mourn, more moments to savour than to regret. More joy than sadness.
Thank you to Oscar’s brothers – your sheer joy and excitement over your new baby brother helped my heart begin to be pieced back together. Now, each and every day I get to see your unconditional love for him demonstrated by hugs and yes sometimes over exuberant affection.
To the thousands of families and people with Down Syndrome who have gone before, thank you! You have made our road so much easier. The battles you have won and paths you have forged have become our inheritance. So much of the care we receive today is because of you. You are our inspiration!
To Oscar. My brave and joyful one. You have certainly brought the x factor to our lives. Your gorgeous personality makes an impact on everyone you meet. Your chuckles fill our home. We treasure the love you bring. You know no limits. You are my little warrior.
Our lives are richer, fuller and blessed with you in our lives.
#nothingdownaboutit #worlddownsyndromeday2017 #downsyndrome
Recently we told our boys that our little one has down syndrome. We explained what it meant and told them that while he would be able to do everything that they can do, it might take him a little longer and be harder to learn how to.
We waited for the reactions. We wondered what impact that this would have. With a shrug of his shoulders, my nine year old said “those words mean nothing to me” and went on to cuddling and playing with his baby brother. And that was the end of that. No barrage of questions, no concerns or worries evident. Those words mean nothing to my boys when it comes to their baby brother and they have not mentioned them since. The love that the boys have for their baby brother is unaffected, unchanged.
When we’re labelled by the world for something, for anything, we need to shrug our shoulders and say “those words mean nothing to me.” Those words could be your own medical diagnosis, they could be words of others belittling your faith, your abilities, your character. They could be words that darken your future or words that seem to frame your world. Shrug them off!
Instead declare the words that do matter – what God says about you and your situation. Speak God’s promises over your life. Make sure the words you say over your life match the future you want. That your soul and body would be strong. That you will prosper and know favour.
I know for my little chap – well everyday he gets told that he is strong and clever and that he will have the grace and favour of God and man in his life. (He’s told he is cute and gorgeous often too!)
“I remain confident of this: I will see the goodness of the LORD in the land of the living.” (Psalm 27:13)
“Jesus replied, “Truly I tell you, if you have faith and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, ‘Go, throw yourself into the sea,’ and it will be done.” (Matthew 21:21)
(Note: All evidence is currently proving that delay is not a factor with this little one! He’s a star!)