If I Could Go Back…

It’s Down Syndrome Awareness Month (predominantly in the US, but happy to embrace it as I always do), so what better time to direct you to a short film I had the pleasure of contributing to.

I have mentioned The Specials before (an online series that also aired on OWN in the US), they have been a fabulous, fun part of our journey with Down’s Syndrome.

I used to work for a company that sold documentaries internationally and we represented The Specials before I was pregnant with Audrey.

It was quite a moment for me, when, back at work visiting colleagues with my small baby, I bumped into Katy (producer of The Specials) and for the first time, I felt excited to tell someone that my baby had Down’s Syndrome! I knew that she would get it.

Anyway, the company I worked for went into liquidation, time passed, but I thankfully remained in touch with Katy because she’s just one of those lovely-type-people you stay in touch with.

She asked if we (my family and I) might be interested in being filmed for some content for The Specials website. They were interested in representing a different part of the Down’s Syndrome journey – the early part with a little one like Audrey.

Of course I said yes, I am always thrilled at the prospect of showing off Audrey and reaching people with our story – showing what life is like.

Katy started filming us the summer Audrey turned 2 and continued into the winter when I was heavily pregnant with Rex.

I’m pleased to be able to share with you a short film that came from some of that filming: a project called “If I Could Go Back…” that has given a voice to a variety of parents of children with Down’s Syndrome, explaining what those early days are like and what we’d like to say to ourselves if we could go back…

Click here to view on YouTube

It’s a perfect film to share during Down’s Syndrome Awareness Month and one that I hope will be useful to new mothers, fathers, grandparents… basically anyone who fears what it might be like to have a child with Down’s Syndrome in their life. What we thought “then” and what we know “now” = just wow. I could literally talk all day about what I thought it would be like to have a child with Down’s Syndrome and what it is actually like.

Audrey makes me so happy, so proud and she continues to surprise me every day with what she is learning and has achieved. So different to the fear in my heart that moment I first looked at her face.

More links to come no doubt, but for now, I hope you enjoy this one, it’s certainly emotive!

Upsetting news

I mentioned a few posts back that I was in touch with a woman who had prenatal screening that advised 99% that the foetus had Down’s Syndrome. I couldn’t offer her the perspective of someone who knew they were carrying a child with special needs, so I put her in touch with someone who could. Today we found out that she decided to terminate.

I am NOT saying she shouldn’t have terminated or that our input should have made her want to keep the baby, I’m just saddened that it’s so scary to have a child with special needs that there’s a way to opt out. I’m saddened that this is the norm. 92% of women who receive a prenatal diagnosis of DS, terminate and whilst I don’t know what it’s like to receive the news whilst pregnant, I do know what it’s like to feel like the diagnosis is the worst thing in the world and soon find out it’s not.

In this particular case, the woman in question met with several families, spoke to/emailed others… so she probably had more information than most before making the decision. I guess that’s really why I find the news so upsetting; even with support and positivity from the Down’s Syndrome community; she still felt she couldn’t keep the baby.

Whilst I know the decision wouldn’t have been taken lightly and I think she was very brave to contact DS families to help her and her partner make the choice, it still feels like we all failed to convince her it would be ok in the end.

This experience has made me more determined than ever to raise awareness and get people falling in love with Audrey. I hope our family can be a source of comfort, inspiration and hope for anyone wondering what life with a baby with DS is like.