‘I may not be who you expected, but I am exactly who I am supposed to be.’: Mom pens touching letter from perspective of daughter with Down syndrome

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“If I could go back in time to when Emily was born, I would not have wasted a single second worrying about her having Down syndrome.

People kept saying sorry but what were they sorry about?

She’s like sunshine, a piece of magic everyone needs in their life.

I was inspired to write this after seeing some moms write what they would say to themselves after their baby was born so wanted to write what I think Emily would have said to me if she could…

Right mom, it’s time to stop crying and put on your big girl pants.

So the doctors are saying I probably have Down syndrome.

Big deal, it’s only an extra chromosome.

And not that much of a shock really!

Remember after the scan you told dad you thought the scan picture looked like I had markers for Down syndrome (fluid behind the neck) and the sonographer asked twice if you were sure you didn’t want to screen…

You knew Mom, you knew.

The doctors are going to say some not very nice things about me, but don’t listen.

They don’t have a clue.

I might have a tough start but don’t worry I’ll be fine, more than fine.

I’m going to prove those doctors wrong.

So wrong.

Just wait and see.

I am exactly who I am supposed to be, maybe not who you expected, but I’m who you need.

The missing piece you didn’t know was missing from our family.

I’ll teach you things you can’t learn in any other way.

People will tell you I’ll be ‘delayed’ but delayed but whose standards?

I’ll get there in my own time, on my own terms, there’s no rush.

Life is to be enjoyed not to be measured by what I can do and at what age I do it.

I’ll take the scenic route and we’ll enjoy things a little bit more.

I know you’re worried about my older sister Anna but don’t be, she’s going to be the best big sister EVER.

We are going to teach each other so much and be the best of friends. Double trouble is what you’ll call us.

She will look out for me and I’ll look out for her too. That’s what sisters do.

Right now you might be a bit crazy but you’ve just had me, so we’ll blame hormones.

If you get scared, sad, or worried just look at me mom…cuddle me, kiss me and love me.

We’ve got this.

We are going to have the BEST time and soon you’ll be wondering what all this fuss was about.

My extra chromosome just means extra love, extra cuddles, extra cuteness…they don’t call us the lucky few for nothing!

Soon you’ll want to shout that from the rooftops, to tell everyone, to change the outdated perceptions and attitudes so parents don’t get scared like you.

But, more importantly, to change things so I and Anna don’t grow up in a world where people are judged and stereotyped by how many chromosomes they have (or don’t have).

So let’s do this Mom, let’s show the world that Down syndrome is a blessing and most definitely nothing to be sorry about.”

baby with down syndrome being held by her mom, smiling
Courtesy of Isabel Heron

This story was submitted to Love What Matters by Isabel Heron. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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