3.21 World Down Syndrome Awareness Day

On the 10th November 2010 we were blessed with Archie and with 3.21 –  three copies of the twenty – first chromosome.  Archie has opened my eyes to a new awareness about Down syndrome but also about life.

Today is World Down Syndrome Awareness Day.  The date for World Down Syndrome Awareness Day being the 21st day of the third month, selected to signify the uniqueness of the triplication of the 21st chromosome which causes Down syndrome  and so surprise, surprise today I am going to write about Down syndrome.  

When Archie was born, the diagnosis of Down syndrome weighed so heavily in my mind, at times I felt like I couldn’t breathe under the weight of it and for the first few weeks and to an extent for many months after, it was an all consuming part of my life as I came to terms with this tidal wave of emotions and what the diagnosis of Down syndrome might mean for Archie, for us as his parents, for our children and our wider family.  Today Down syndrome has found a comfortable space in my mind, in my family, in our home and in my heart.  That doesn’t mean that I am not frightened or afraid or that Down syndrome does not present challenges.  Sometimes I feel sad when I see how hard Archie has to work to stand up and control his hyper mobile ankles, how he struggles to make his mouth move to make the sounds we are working on , sometimes I wake up in the night worrying that he might be one of the ‘increased likelihood’ cases and sometimes I think about his life expectancy and how Archie might cope if I am not here by his side.  But mostly I just delight in Archie’s enthusiasm, his warmth, his cuddles, joy and spirit and his outstanding determination.

Through Archie I understand that life isn’t always easy and that some days are more challenging but that sometimes having to work a little bit harder brings huge rewards and cheer and so when we reach the smallest of goals we celebrate.  There are things in life that you choose and some things that you don’t think you want to choose because initially you are worried that you can’t cope, that you won’t do a good enough job, because you are scared by the unknown but through Archie I have learnt to believe in myself and truly appreciate the love of my husband, my children, my family and friends.  So today whilst also celebrating Down Syndrome Awareness Day and recognising the wonder in all of the hundreds of thousands of individuals in the world who have Down syndrome I also want to say thank you to all those people who don’t count chromosomes and see differences.  The people that see Archie and all that he brings to this world. These people truly accept Archie, praise him, wave enthusiastically to him, hi 5 him, cuddle, play peek a boo, help him when he is struggling and open their hearts and share in his joy when he does something new and recognise all the good he has to bring to the world and I feel so very grateful to these people who share and are part of his journey.  Thank you to each and everyone of you who celebrate and love my boy and make him feel loved and special.

So what does today mean to me?  I could write about all the facts I have learnt about Down syndrome, about low muscle tone, small stature, almond shaped eyes, how it is a naturally occurring chromosome abnormality caused by an error during cell division and explain all the terminology that I have read about and educated myself on over the last two years but that alone is not what makes me celebrate Down Syndrome Awareness Day.  To me this day means so much more.  It is about individuals and love, acceptance and awareness of the beauty in difference.  It means that I feel honoured to be the mother of a child who continues to stretch my perspective on life every day.  Through Archie my perspective has been changed and I see so much more of people than I ever did.  I feel more vulnerable, more caring, more sensitive, more empathetic, more capable, more inspired to make a difference and more aware to see the needs of others and to celebrate uniqueness.  Today is about compassion, understanding and embracing children and adults from all walks of life and with a variety of needs.  But most of all today I feel a fierce love, honour and overwhelming pride for my delightful, comical, sociable, spirited and determined boy who rocks that extra chromosome and spreads happiness with his infectious laugh where ever he goes.

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Today is about celebrating Archie’s awesomeness, how his diagnosis has changed me forever and how he encourages me, most days without knowing it to be the best version of myself, for the struggles we have overcome, the roads we have paved and for facing the journey ahead with positivity and not letting my fears for the future take away from the joys of today.  Today is about hoping for a society which continues to spread the message of acceptance and inclusion. A society which cherishes and encourages all individuals to fulfil their potential without barriers and a society which sees Archie and the hundreds and thousands of people with Down syndrome and other needs, just as they are, beautiful people with potential and abilities and a bright future.  A society which recognises the beauty of differences

Happy World Down Syndrome Awareness Day.  Archie, you are so very loved and will get a few extra hugs and kisses today from us all. xxxxxx