The fight continues

This picture was taken 9 years ago, Noah was 17 days old and we headed off on our first road trip!

Only one week later, I took my three week old son to get his passport photo and we flew to Lanzarote. The air hostess told me he was the youngest baby she ever had on a flight. We left to escape, to feel “normal”. We wanted to go away and get to know our new bundle, away from judgement, pre-conceptions and the idea that our baby was somehow lesser then other people’s. We were determined that Down Syndrome would not define him, other people’s opinions would not shape him and we would love every piece of him.

We decided initially not to tell anybody outside our family that he has Down Syndrome, we would let them get to know Noah first and the syndrome could be explored later. Since that decision, we have invested every piece of our soul into supporting this amazing little boy be the best version of himself that he can be. To support his future independence, his contribution to society, his ability to work and give back and to ensure he can function healthily and happily in a tough world. We have been learning, educating and teaching since he was only a few months old.

Every extra day of lockdown chips away at those years of achievement, the forward steps, the milestones and the hard work he has had to put himself through since he was so tiny and it chips away at his potential to succeed. As I watch the debates this week, the back to school debacle for kids with additional needs, the finger pointing, the brutal anger, the judgement, I am reminded why we boarded that plane 9 years ago. I will not point fingers, I can see all sides of this impossible scenario but when I hear comments from people who say parents want their kids back at school so they can have a break, some respite or because they use school as a substitute for other therapies, I am reminded that we will always have to fight for our little boy, people will not understand the long hardworking journey my little boy has been on, they will not understand that we ask for nothing other then the best chance at happiness that our kids deserve.

We value school more then most and we never take it for granted. We will always have hurdles to overcome that others do not and every step we take forward will be rocked by events we can’t control. I write this page so that people can have an insight into our journey, it has resulted in so much love and support for Noah from all corners of our community and I never take that love and support for granted either! But if I can use my voice in any small way to help people understand the importance of education for our kids, in whatever form it takes, I cannot leave it unsaid. Big love xxx

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