Who makes up your family?

Bruce (dad, entrepeneur, adventurer, a little crazy, inventor and business owner), Sam (mom, bookkeeper, personal assistant and part time painter, passionate about getting the family to eat more fruit and veggies and cut out sugar!), and our three precious girls; Eva-Mae aka Eva Bug/Buggy (7yrs old), Noelle (5yrs old) and Scotty (16 months old).

When did you become a mom for the first time?

I first became a mom on Women’s Day! 9 August 2012 was the day Eva-Mae was born and we got to hold the teeny bundle of 2.6kgs that made us parents. We thought she was the most beautiful thing we had even seen…though looking back at pics now she actually looked like a tiny alien – haha! Them rose-tinted glasses…

When did you find out about your child’s diagnosis?

On 7 March 2012 at 15 weeks pregnant we received our amnio results confirming Down Syndrome.  (We’d had a few soft markers at our previous scan – a thick nuchal fold and iffy blood test results – and were referred to a foetal specialist.) These results also confirmed we were having a little girl. There was a lot of turmoil that followed these results, we were asked
to make decisions quickly. We were advised to terminate soon and told that life with a child with Down syndrome would take a toll on our marriage, our family, our finances and require a full time nurse. I remember climbing into the elevator after being told all these negatives and although devastated by the news I laughed incredulously as I turned to my husband and said “A full time nurse??? Aren’t all mothers full time nurses? That’s what parenting is!!”

What is the hardest part about being a mom of a child born with DS?

I think mostly isolation. Our current biggest challenge is Eva wondering off. This makes it tricky to go places and socialise so I spend a lot of time at home, it’s just easier (not necessarily better). Even though I’m a homebody I do sometimes feel isolated and like I’m missing out on things. The other challenge is making sure your other children’s lives don’t revolve around ‘special needs’. Giving them one on one time and some ‘time out’ – play dates with friends, grandparents etc.

Favourite guilty pleasure?

A meal out with a friend or trawling second hand shops. Oh and Netflix of course!

What do you do just for you?
Exercising with a trainer twice a week keeps me (mostly) sane and I do adult HipHop once a week (I’m awful, but I love it).

If you had to pick the soundtrack for your life what would it be?

Raindrops keep falling on my head.
But there’s one thing I know
The blues they send to meet me
Won’t defeat me, it won’t be long
Till happiness steps up to greet me
Raindrops keep falling on my head

But that doesn’t mean my eyes will soon be turning red
Crying’s not for me
‘Cause I’m never gonna stop the rain by complaining
Because I’m free
Nothing’s worrying me
It won’t be long till happiness steps up to greet me

What is the kindest thing someone has ever done for you?

When my work found out that Eva would have Ds they offered to pay for her medical aid and still are to this day. When friends or family offer to have Eva for a few hours for a play date (these moments are rare and savoured).

What does Down syndrome Awareness month mean to you?

An opportunity to ‘boast’ about the awesomeness that is Eva. A chance to jump on board with others raising awareness and making a joyful noise.

If you could change one thing in the world to make it an easier and better place for your child, what would it be?

To be accepted and to have friends (with DS and without).

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