What I Wish I’d Known When I Had A Daughter With Down Syndrome

April 30, 2018

Our world is filled with so much more than a list of possible outcomes handed to us at diagnosis.

As we turn the corner, I hear sudden cries of “yay” and the sounds of a hand tapping on a leg twice, the telltale sound that lets me know Claire is excited to go to Nana’s house and see the new puppy.

Two taps tells me more than most parents.

Those two taps are the sign that Claire has just recognized her surroundings, despite the fact we are not traveling our normal route. She has just signed “dog” to herself and used one of her few words to express excitement. I couldn’t be more proud.

Two and a half years ago this moment seemed like it would never come.

Claire was lying in a humidicrib while the words ‘Down syndrome’ rang in my ears. Like most of us, I had heard the term a million times but it wasn’t until I heard those words applied to my child that I realized I had no idea what this truly meant. My doctors told me that based on her lack of medical complications and her mild features they believed she “may be mild” but that she would definitely have learning delays, especially speech.

It’s only as she has grown I have realized how ludicrous this is as if you could know someone’s intellectual capability based on appearance alone. Unfortunately, I am not the only parent to have heard this, and I am sure I will not be the last. Funnily enough, as Claire has grown her features have become more pronounced making up part of the adorable creature who stands before me.

Since the time of diagnosis, I have worked hard with Claire who communicates with a mixture of sign, speech and toddler screams. Claire has an eager mind and is able to identify colors, match letters, and yell “shu-up” to anyone who dares try to talk over her.

As a toddler, Claire stands out.

Nearly everywhere we go, we are approached by someone who is just a little curious, or watched from across the room. And why wouldn’t they be? I had never met a child with Down syndrome before I had Claire. Nowadays she is a rarity, and with increasing prenatal diagnosis and termination rates from NIPT testing, she is a part of a decreasing community.

So yes people are curious.

If they approach it is with a knowing smile and a comment on her fabulous red hair and then the conversation follows similar pathways.

“Did you know before she was born?”

“Is she healthy?”

“How is her heart?”

“How severe is she?”

It’s not a conversation you expect from a stranger in a playground, but I know they mean well.

It is certainly much better than the internet, a much darker place that is filled with comments written to break a mother’s heart. I try to use these moments as a chance to educate and empower but sometimes I just wish that I didn’t have to. I wish I was just another mum at the park.

So we ask that you take a few moments to learn about our world. Our world is not sad, or burdened, or a “risk”.

Our world is filled with so much more than a list of possible outcomes handed to us at diagnosis.

Our children are no more defined by their chromosome than the colour of their eyes, just a part of the beautiful whole. And beautiful is exactly what it is.

Every day I watch the joy on Claire’s face as she sings along to the rainbow song and the anticipation before she suddenly yells our “BWOO” when we get to her favorite color.

I watch in wonder as she uses her hands to thank a waiter or call her Nana’s puppy while yelling “BAMAN” at the top of her lungs (Her big brother loves the “Dark Knight”).

Claire is a determined, funny, cheeky little girl and just like any other two-year-old, she will not be told what she can and cannot do.

She is not like your cousins, aunties sister who also happen to have Down Syndrome, because just like everyone else she is an individual.

She is not always happy, she does like music, she hates bacon and she loves the Teletubbies.

Two-and-a-half years ago, I remember watching my baby girl lying in her cot sleeping and wondering how I had been so unlucky. I wondered what twist of fate had burdened me with a child who would not grow up, who would be forever at home. I laughed with my sister that I had to be the most unlucky person anyone had ever met.

I wish I knew then what I know now.

The day Claire was born my world expanded. I was given a chance to learn and grow, a chance to educate others, and a chance to support other mums.

Most importantly I was given a chance to be the mother to a little girl who amazes me every day. She is the type of child who sits on the bottom step with her brother who is in time out for smacking her and cuddles him when it’s done. She gives everything a shot and tries again even if she didn’t get it the first time. And at the end of the day she reminds me that she is just a toddler, who will watch you say no and touch it anyway.

Image via lovethispic.com.

This article was republished with full permission from mamamia.com.au. You can read the original version, here.

If you liked this story, read more like it on mamamia.com.au:

A Child In An Adult’s Body: When Children With A Disability Grow Up
I’ll Never Forget The Way A Technician Delivered My Unborn Child’s Down Syndrome Diagnosis
“I’m So Sorry”: Why We Need To Rethink Our Relationship With Down Syndrome

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