Still You – World Down Syndrome Day

In your first 12 weeks of life no one questioned you or your abilities. No one wondered if you would ever be different. In those weeks before that appointment, you were still you. People didn’t avoid us or judge. The community was still as strong as ever. Until that room, that sonographer, that scan. That morning you were still you by the evening you were someone else.

In those next few weeks the word spread. The questions started and the judging started. While you were growing hair and fingernails we were dodging the unwanted questions surrounding your survival and existence. We didn’t notice, we were blind to it but the community began to fade into nothing. Those words spoken by that Sonographer ‘your baby has a thick Nuchal fold’ seemed to echo around our once tight-knit community. We were completely unaware that while one group of people left another was waiting for us. One that understood, one that didn’t judge, one where you could just be you. Time passed, people faded, information multiplied. While our lives prepared to change, yours was only just beginning.

As your family, we awaited your arrival, we waited and we waited until here you were. Still you. You were 3 days old when you faced your biggest hurdle. Five long weeks passed before you, our little baby was allowed home. After facing so many hurdles and challenges, I still don’t know 2 years on how a tiny fragile baby overcame so much. But then again you are stronger than everyone thinks. The next 2 years up until now have been overwhelming for us, but you have taken it in your stride. We have become part of a movement, a whole new, unexpected door has been open and we now have the abilities and motivation that could move mountains all because you are still you.

Our community has the good, the bad and the ugly. The good; the ones that support and love you. The bad; the ones that try but still don’t know how to react to you then the ugly; The ones that see you as how I like to put it, a 2-headed monster. They refuse to accept you for one reason or another but in their world, you don’t fit. But would you want to?

Some people will accept you, some refuse to and we will never find out why. In our family, you are the glue that sticks us together stronger than anything else ever could. Your still so small and Brother you have moved mountains just with your smile, with your strength and with your courage. With support, you will achieve more than most people. I will always tell you this; Just be you and never ever hold back. Be whatever you want to be. You have nothing to lose and everything to gain because whatever happens, you will always still be you. You have nothing to stop you, the world is your oyster and the skies are the limit.

Some of the community may question you, some may even doubt you. But Brother, never listen to them. Yes, you are different. When has it ever been ‘cool’ to be the same? You are different, but you are everything we as a family have ever wanted and more. Watching you grow, develop and achieve so much is an honour. You have done more in your 2 short years of life than some people achieve in a whole lifetime. Having you as a Brother has made my life change. Everyone around you has changed. The people we have met, the places we go, the opportunities we have all because of you. All of this just because you are still you.

We have met families and made friends with people from all over the world. A picture of you and your awareness message has also gone all over the globe. You are so small and look so much different to the boy we all imagined when that Sonographer, in that room, said those words. But because of that diagnosis, you are you and wouldn’t have you any other way. Whether it is 1 or 100 people that doubt you. Never listen to them. As your family, we value and support you and we will always have you back. The community doesn’t need to be sorry, they don’t even need to understand if they don’t want to.

Thinking back, while we felt a million emotions, you were still you. While people asked, what felt like a million questions, you were still you. While doctors write a million words about you, you are still you.

But Brother, we got this. We’ve got you. To other people you are unanswered questions. To Nan and Grandad, you are a Grandson. To Mum and Dad, you are a son. To your Niece and unborn Niece, you are an uncle. To me and your other siblings, you are a Brother. We are your family, your supporters and you are our future. We love you from your blonde hair to your chubby cheeks to your palm crease to your amazing personality to your extra chromosome.

All because you are still you.

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