Feeling the Burden of Down’s syndrome…

additional needs, disability, down syndrome, down's syndrome, equality, family, inclusion, journalism, love, motherhood, new mum, pre natal, pregnancy, special needs, Uncategorized

Today was a pretty typical day. Seb went to school and tag rugby afterwards.

Nothing particularly stood out. He did the “sign” at drop off. One boy asked him if it was true that he had been to Stamford Bridge this weekend – checking with me too for verification. He swapped some football cards with another mate. On the way home he stopped to stroke a cat for ages and then told a lovely stranger that he had a cat of his own and that his uncles cat sadly passed away last week. His home communication book said how he did some great maths work today, made good progress with his spellings, sat through a long assembly.

He ate his fish and potatoes and broccoli, but left his peas. He got yogurt on the table and asked for the treat box. Unremarkable.

Tonight, as he tried to stay awake for the match, he was sleepily stroking his cat and said that he wants to be a vet, and help sick animals. I could see he was struggling to stay awake so I carried him up to bed. He smelt gorgeously clean, fresh out of his bath in clean pyjamas. And as I tucked him into bed with “mr dog” his water bottle, he told me he had missed me today at school and would I sit with him for 10 minutes. “Of course I will” I said, knowing full well it would be more like one minute….

And as I watched his eyes get heavier and heavier and his breathing deeper and deeper, I felt overwhelmed. Overwhelmingly lucky to have him. It was as though I could physically feel my heart swelling. My little boy with the purest heart. Good intentions, that sees the best in everyone. And I couldn’t help think of Iceland and Denmark and the millions of people who think he is a burden. That think he has no value and no place on earth. The people who think they couldn’t (and wouldn’t) cope with “someone like that” and the sentiment that no baby is better than a baby with Down’s syndrome.

And I thought how the *only* burden I have ever felt since having a child with Down’s syndrome, is the view and misconception that it is something to fear (and I include myself in that, 8 years ago).

And my bursting heart hurt. A lot.

7 thoughts on “Feeling the Burden of Down’s syndrome…”

  1. Diane Wailes says:

    What a wonderful post. It makes my day to read about your beautiful little boy. He sounds like a complete joy!


    • Such kind words. Thank you. It’s funny, the posts that resonate most with people are always the ones spontaneously tapped out on my phone! Thank you for taking time and effort to comment x


  2. so beautiful! so real and so true! there are times when I feel deep sorrow for the people who will deny themselves these gifts. what an incredible loss. thank you for sharing.


  3. dderbydave says:

    Beautifully written. All we can do is keep writing about our kids so that more folk realise how wonderful they are.


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