Maxwell will be one year old on World Down Syndrome Day

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The Max factor: A year of discovery

A letter to my son on his birthday, 21 March 2015

by Molly, Max’s mum

With a prenatal diagnosis at 16 weeks for Trisomy 21 my pregnancy with you was less of a journey into the unknown and more of a medical intervention. Full of statistics about how well you were growing, whether I would carry to term and how likely it would be that you would need surgery at birth. I was unable to have my planned home birth as I was deemed to be high risk. As it was we were lucky to make it to the hospital, with a 2 ½ hour labour you came into the world as peaceful as you have remained since. Of course I had read up on what to expect, difficulties that may arise, health issues that may or may not complicate your development. What nobody told me is how beautiful you would be when you were born, how perfect your features and how much you would look like your sister.

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No one told me that you would be an angel, always happy, that you would never cry or scream or whine. That you would smile in your sleep, wake up with a grin and continue to laugh throughout the day until bedtime. That you would have a magnetism I’ve never experienced before, when you turn on that beam for me you light up my soul. You charm everyone you meet in the most beguiling manner. There is so much love surrounding you that everyone wants to be near you, to soak up the pure love that you radiate; to bathe in the light you’re so full of, to laugh with you, to relish the moment and just enjoy being alive.

When you were born I had no experience of disability. I suddenly became the parent of a disabled child and yet I couldn’t figure out why you had been given this label. You have an extra chromosome, it helps shape who you are as a person but it doesn’t define you. To me you don’t have any syndrome you just have a way of being that is uniquely yours. Yes, you find some things in life more difficult to achieve but your perseverance and determination help you overcome most obstacles you face. They will stand you in good stead for other achievements as you grow. Everything is relative and this single mindedness presents itself in a variety of ways – for someone with low muscle tone you have an extraordinary ability to go as stiff as a board when it comes time to get into your car seat!

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You have taught me so much about myself and others this past year. Patience – as I learn to appreciate your development (and mine) at a slower pace. Tolerance – of others and their attitudes, the challenges some face in their lives because their eyes are not yet fully open. Understanding – of what it actually means to live, to have life and enjoy being alive. You have taught me how to have a conversation without talking, just listening and watching. How to laugh properly and for no other reason than it makes me feel good and it’s fun. To let go of perfection, or my idea of it, to understand that it’s ok not be in control all the time and that there’s freedom in going with the flow.

I have learned to stop comparing myself as a mother and you as a baby, against everyone else’s achievements. To enjoy and celebrate each milestone when it comes knowing the amount of hard work we’ve all put into helping you get there. You have shown me how to live in the present and to take time to enjoy the world around me. This last year has been one of change and discovery for all of us. Attitudes and preconceived ideas have shifted and have been replaced by new, more gentle and accepting personalities. We’ve all become calmer, happier and more open; able to cherish each moment and acknowledge the true wonder surrounding us everywhere, every day.