Because of you: what we've learnt from our daughter with Down syndrome


As part of Down Syndrome Awareness Month, we share a story from EB member Julia Watson, who has a daughter with Down syndrome. She recalls the ways her little girl has changed their family for the better ...

To my dear little Georgie girl,

I remember the moment I first loved you. It should have been the moment you were born, and in a way it was, but it took me a while to really open my heart. In that first couple of hours, I did all the right things, all the things a mum should do. I held you, kissed your dear little head and patted you when you cried. And when I knew you had Down syndrome, I wrapped you a little tighter, and rocked you, and told you it would be ok ... somehow it would.

In some ways, though, I felt a little distant. I gave you to your daddy - in fact, I was eager that he take you. The midwife said I could take a shower, and I stood there, feeling almost out of body, and nearly out of mind, for 45 minutes. When I came out, the light in the room was dim, and you were swaddled tightly and laying in your hospital crib. The double bed in the birth suite was made up so your daddy could stay the night, and we could try to come to terms with what we had just learned. We were scared, baby, so, so scared.

And then I had a dream. A dream where a midwife was standing in front of a closed door. She told me there were lots of babies inside, and I could take any one I wanted - and leave you behind. When I woke up I told your dad about the dream, and he wanted to know which baby I'd taken - but of course he knew the answer. In my dream, I'd flown in there to get YOU, and you rubbed your soft cheek against mine and sighed. I can still feel it, even though it was just a dream.

And that was it - I knew we'd be ok. In the four years that have followed, you have taught us all a lot about life and what matters.

At home, it didn't take you long to let us know that you didn't like hearing people yelling, not one little bit. You didn't mind people screaming while they had a game of chasey, or kids yelling near your ears, but the minute there was any yelling in anger - and you certainly could tell the difference - your demeanour changed completely. Your little face would get so sad, and you would hold your breath for a few seconds, and then just HOWL. You liked people to be gentle with each other, so, because of you, we all learned to be more gentle.

You didn't like to rush. As far as you were concerned, you had all the time in the world. You were so good at putting up with me as I rushed you to kinder and school runs, rushed your feeds, put you down to play on the floor as I rushed to put on another load of washing. You never complained, but I saw a change in you when I put you down; a disappointment, like you just wanted to be in my arms more, to just sit, be calm, be quiet. I said to your dad that we had to hold you more, as you needed us. So when your dad got home, he'd sit in his chair and take you in his arms, and most of the time you would both fall asleep. Later on, it was my turn. Your big sisters were always desperate for a cuddle too. So, because of you, we learned to be slower, to savour what mattered. And it wasn't the dishes.

You didn't like to do things quickly! Even by the "standards" set by other kids with Down syndrome, you were pretty languid. But when you "got" something, how we clapped and cheered! Your sisters were only little, but they learned really quickly how important it was for you to work something out. So, because of you, we learned to be patient. There's no hurry, after all.

When you were five weeks old, I had to hand you over to doctors, to operate on the cataracts that made you blind. That was really hard. I cried, and your daddy cried, and when I handed you to a surgeon, it was the scariest thing I had ever done. But you barely even shed a tear. When you came out with stitches in your eyes, when you went under again to have those stitches removed, when you were frustrated with the patches and they made you swat at your eyes, still, you didn't cry. And we decided, if you didn't cry, then we should try to be stronger, too. So, because of you, we learned to be brave. Because they don't come any braver than you.


So I want to thank you, for all the gifts you have given us. Sometimes I have sat in groups of people, and told them about how many positives you have brought to our lives, but I sometimes see their eyes cloud over a little, as if I am trying to sell something and they ain't buying. But that is just simply not true. Imagine telling people that you had met someone who taught you the true value of family, taught you what mattered in life, taught you how to slow down, and savour life, and be more gentle, and more brave, and more strong. They would say, 'Who is this wonderful person? Aren't you the lucky one!' Does it matter that those gifts were given to you by someone who just happens to have an extra copy of the 21st chromosome? It doesn't. Not a bit.

We always call you the heart of our family, and you really are. A giant heart it is, too, as it holds a piece of all of ours.

Love you to the moon and back (and then back again),
Your besotted mummy

This article first appeared on Julia's blog,

Read more about Julia's family in her article Don't pity me beause my daughter has Down syndrome