October is Down Syndrome Awareness Month. I love a good hashtag so… #DSAM2014.

Raising awareness, (as I believe I’ve already rambled on about), is important because it helps new families and anyone who might come in contact with someone who has Down’s Syndrome feel more comfortable.

I appreciate there are tons of blogs raising awareness and giving important information on DS, in fact, there are too many for me to read! Yet I know that outside of the DS bubble, they are likely to go unnoticed. I certainly never noticed DSAM pre-Audrey!

But when Audrey was just days old, I gorged on birth stories – reading those was such an amazing, cathartic, experience. It was also a little like poking a bruise – reliving those overwhelming, negative emotions. I guess it feels ok to have had crazy, negative thoughts if other people felt that way too… Especially if, look! they’ve made it out the other side and are so happy! There was so much positivity to cling to and help us through those confusing first days/weeks/months.

And even though we are only 15 months into our journey, I still feel like we’ve come a hell of a long way and also that I have a responsibility to give back… That I should be sharing our story just in case someone else finds it useful/a comfort/interesting. I also want to make sure that sharing out story seems ‘normal’ (whatever normal is), but you know, not too special-needsy. Much of what we experience with Audrey is just what everyone is experiencing with their little ones.

In fact, I got so motivated to spread DS awareness this week I did something I thought I’d never do…. I joined Mumsnet… dun dun dun!

I thought I could start a thread, offer up a Q&A for women who had either just had a baby with Down’s Syndrome unexpectedly or answer some questions for women with a prenatal diagnosis or ‘high risk’ screening. I was worried that rummaging on the dreaded Mumsnet might actually upset me – that there would be a lot of negativity and discussion around ‘high risk’ results and planned terminations. I only looked at one thread relating to the screening and someone sensible advised the expectant mother to look at, or comment in the special needs section of the site. Aha, so I had underestimated Mumsnet! They have a special needs section in the chat forums! I sort of felt like I wasn’t needed! More on mummy forums in another post… I have a need to rant about them, but now is not the time!

Down Syndrome Awareness Month has definitely helped me picture a better future for Audrey and helped me get through some tough early months… So now a year on from our first DSAM, I hope our story is helping some other new mama feel a bit better about it all.

And here she is… A very popular picture of Audrey (over 200 likes on IG) from Saturday…


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.