Didn't you have the test?

This is the question I am most asked when people discover Emma has Down Syndrome.

'But didn't you have the test?'

We did have some testing, and when that came back with a 1 in 750 chance of Down Syndrome we chose not to test further. The result wouldn't have changed our decision whether to keep her or not, so there was no point in having further, more invasive, testing.  I probably would have agonized for months over how this would affect our lives, so in a way I'm glad that we didn't know before she was born. It may have been good, though, to know, so that we could have been connected with support much earlier.

The question I ask now though, is 'What would the world look like without Down Syndrome?'

In the 8 short weeks since Emma was born, I have been shown a world full of love, a world full of challenges, a world full of support. I have met people whose lives have been forever altered by having a child with Down Syndrome. I have, however, not met someone whose life has been destroyed by having a child with Down Syndrome. The people I have met are full of positive stories, of challenging stories, of funny stories about how their lives have changed. Not one of those people wishes their child to be without Down Syndrome. If you took it away, they wouldn't be the same person, would they?

There has been some talk about the ability of science to remove Down Syndrome. To discover and remove the extra gene, therefore 'curing' it. I'm fairly sure this is not able to be done after a person is born, but who knows how it will happen once science catches up with itself. What would the outcome be? What would the point be?

I know that Emma will face some challenges in her life, but all people face challenges. I know that Emma may struggle to learn to walk or talk as quickly as a typically developing child, but some typically developing children also struggle with learning things. I know that when the time comes for Emma to get a boyfriend (or a girlfriend!), move out of home, and live independently, I will struggle with letting her go. I'm sure I will also struggle with those things with any other children we may have. There's nothing that she can't try, nothing that she can't do, if she wants to.

There are many people who find out that their child will have Down Syndrome that do not have the same view as I do. That presented with the facts, cannot see themselves raising a child with Down Syndrome. They choose to not raise this child, and instead terminate, or put the child up for adoption. The reality of the world is that some people believe that they are not equipped to handle whatever it is that Down Syndrome may bring to their lives. I cannot judge these people, because I do not walk in their shoes. That decision must be the toughest one to make, and they are very brave to make it. Loss is horrendous, whether you choose it or the choice is made for you.

I don't want a world without difference. Difference is what makes us unique. Difference is what makes us love and appreciate ourselves and our family. Difference is how we learn to be ourselves.

I don't want science to take Emma's difference away.

The first month

It's been a month since Emma arrived... and what a month it's been!

Since we came home 3 weeks ago, we haven't stopped. We've had visitors - friends, family, and midwives. We've been out and about a couple of times as a family. We've been to the doctor's, Medicare, Centrelink, the shopping centre... so many places!

We spent Easter weekend with family - my Mum's family is huge (there's about 50 of us) and we all get together at Easter and Christmas, and a couple of other times during the year. We used to get together once a month, but it got too crazy so now we just do 3 or 4 times and it's much more civilised! Mum is one of 6 kids, and they've all got a few themselves, and now the kids are having kids so it's huge... Emma was the star of the show at Easter. Everyone wanted a cuddle, a chat, and a snuggle. It was held at my Gran's house about an hour and a half from our house. We were a bit worried about having Emma in the car for so long but she loved the trip - slept most of the time and it didn't bother her at all. The outfit we bought her was way too big, but we put it on her anyway!

Emma's First Easter

My husband goes back to work next week, so Emma and I will be on our own most of the day. I'm sure this will be a big change for all 3 of us - while we are all looking forward to getting into a proper routine, I will miss my husband's help and support.

Since he'll be back at work and unable to drive me around, we had to visit the doctor and get clearance for me to drive. Having a c-section means I'm not meant to drive for 6 weeks after surgery - if I do I'm not covered by insurance if I have an accident. Luckily, my doctor is happy with my recovery and has given me clearance. Woohoo!

I think the next few weeks will be difficult while we work out our routine again. I will be setting some time aside each evening after Emma is asleep to plan what needs to happen the next day - housework, washing, outings etc - so that we'll be able to do what needs to be done but also have some fun time too. Emma's sleep pattern is slowly sorting itself out - we're getting more awake time during the day and able to settle her down quickly when she wakes during the night for a feed. She was a bit upside down for a while there - awake all night and asleep all day - but it's sorted itself out now.

On Monday night we're going to our first meeting with Down Syndrome Victoria. It's a meeting for parents with a new child diagnosed with Down Syndrome, aimed at giving some basic information but also connecting parents with each other. I'm really looking forward to it.

I'm also looking forward to our first visit from the Maternal & Child Health Nurse - she'll weigh and measure Emma, check some milestones, give us advice on what we should be working on with her, and hopefully connect us with a local Mother's Group. I'm apprehensive about joining a Mother's Group because I don't want them to judge us or treat us differently because of Emma's Down Syndrome diagnosis - but I think that is mostly my issue and I shouldn't let it stop me from trying to connect with anyone. After all, we want Emma to be given the same opportunities as any other child, so I need to give her them myself to begin with!

Our 1 Month Old