If you’ve arrived here after receiving the news that your baby may have Down syndrome, whether there’s just a high likelihood or a definite diagnosis, firstly – congratulations on your pregnancy 🙂 And I’m so glad you’re here.
After receiving our initial nuchal results at 12 weeks into the pregnancy, it was a pretty tumultuous time and I felt fortunate to stumble upon some great resources that definitely helped get me through. I remember reading lots of positive stories from parents, talking about their beloved child with DS and I honestly couldn’t get my head around it – in my sadness, I couldn’t imagine ever feeling happy again and truly loving this less-than-perfect child growing inside me. But, you know, now I’m one of those parents who can gush about my baby until the cows come home 😉 Yes, Nicholas does have 47 chromosomes, but he’s all sorts of perfect.
Of all the stories I read during the pregnancy, one line still echoes in my head – of a mum who had a prenatal diagnosis and, once her baby arrived, she said, “Oh, if only known it was YOU inside me, I wouldn’t have been so sad.” It’s so true. Once I knew my baby, once I could hold him in my arms and get to know Nicholas, rather than a diagnosis, it was all okay. I knew we’d be able to face any challenges ahead because he is our son, and that’s just what you do when you’re a parent. But, believe me, I know the journey to get to that it’s-all-okay place is hard one.
Everyone is different when it comes to their need for information and my advice would be to only read what you feel like reading. My husband decided he really didn’t want to read anything until Nicholas was born, whereas I consumed lots of information. However, while I was pregnant, I chose to read only stories, books and blogs that were positive and uplifting. Sometimes even the positive stuff was a bit overwhelming and, once Nicholas had arrived, I was in a much better place to try reading it again. I tried to remember that my baby is writing his own story – it’s good to know the journey other families have been on, but that doesn’t mean our journey will be the same.
If you need some support or inspiration, here’s my go-to guide of resources:
* I am very proud to have been (a very small) part of the creation of this website where you can download an e-book of diagnosis stories. Recognising that there is very little support for parents who receive a T21 diagnosis (either prenatally or at birth), the mums who created the DSDN have put their heart and soul into creating this resource. You may even see a familiar story and face in the ‘prenatal’ section 😉
* Downsyndromepregnancy.org has a great, downloadable e-book that addresses many topics, such as good ways to break the news to family and friends and other things you might want to know.
* I lived on this Down syndrome Pregnancy forum on Babycenter. It’s an American site (I didn’t find many Australian forums that were as active, mainly due to the numbers) but there are people from all over the world who discuss their fears, joys and journey there. There are some amazing women who facilitate the group, and discussion from parents who have children with DS as well as parents new to the journey (either awaiting birth for high chance of diagnosis, or with a confirmed diagnosis).
* The motto of the International Down Syndrome Coalition is that ‘all life is precious’. You can find a list of all their online support groups here.
* There are a number of closed (private, invite only) Australian-based Facebook groups for discussion amongst parents in the DS community, as well as one for DS pregnancy. If you’d like access to any that I am a part of, please email me or contact me via the Mummalove FB page.
My Favourite Blogs
- Enjoying the Small Things
- Everything and Nothing from Essex
- Conny Wenk
- One Beautiful Life
- A Perfect Lily
Again, there are many books out there relating to Down syndrome. My favourites include:
- Expecting Adam by Martha Beck
- Bloom by Kelle Hampton
- Dreams Change by Deanna J Smith
- A Good and Perfect Gift by Amy Julia Becker
- Gifts and Gifts 2, compiled by Kathryn Lynard Soper
- The Year My Son and I Were Born by Kathryn Lynard Soper
It will be okay.
When you are ready, here’s a list of educational resources you might find helpful.