A year ago this week, I started something I never believed I was capable of doing. I started compiling all my thoughts about my pregnancy, birth and first year with Wade and I started blogging. My aim was to speak to other families who may be in a similar position to us and tell them everything. I wanted to show that something can rip your world apart and make you question everything you know and still be positive and joyous. That in the midst of swirling, competing emotions, a path emerges and while it may not be the path you intended to take, there’s no reason why you can’t plant a few bluebells and enjoy the walk.
It was important to me that I didn’t just end up preaching to the choir about Down syndrome too. I wanted to speak to people who had no experience of Down syndrome and show them that life is not like they imagine it is from the outdated stereotypes they may be familiar with. I wanted to throw the door open on my world so that no one had to creep around the issue or feel uncomfortable about talking about Down syndrome. I wanted people to think about and forget about Down syndrome at the same time when they thought of us.
I remember the week I launched the blog. I had decided to write my whole pregnancy story in 6 parts and publish them together before telling anyone about it. Two days after posting the first few posts, I received my first comment…. from a complete stranger on the other side of the world before anyone knew I was even writing this thing! It blew my mind that in the endless sea of blog posts on the Internet, someone had stumbled across little old me!
On April 1, I posted my blog on Facebook and what happened next was amazing. I received messages from old high school friends, dear close friends and friends of friends who had intended to glance over it out of curiosity and found themselves reading the whole thing and being incredibly moved. People told me how much they appreciated my honesty and how much I had answered some of their questions. It was an amazing experience.
This little blog has allowed me to do something I love and allowed me to be proud of myself which is not a feeling I previously let myself feel very often. It has allowed me the confidence to write, which I love and hope to do more of…. (Writer for Hire!!) It has given me an opportunity to work face to face with newly diagnosed families and contribute to publications. We were able to tell our story in a national newspaper article which was exciting and it has helped me connect with a whole world of wonderful writers and parents who relish in the exchange of ideas and the odd polite debate!! There are some incredible writers out there. Check out downsyndromeblogs.org to read more stories.
I did not think any of that would happen when I started tapping out my words a year ago! When I first started writing I was worried about trolls and haters. I can honestly say that in one year, I have never had a hateful or hurtful comment. I’ve had people who don’t agree with everything I say (Yes! I’m as shocked as you are….) but not one intentionally awful comment which is lovely.
It always surprises me which posts get a lot of readers and which ones don’t. I’m sure if I gave my posts titles like…7 things you won’t believe you are reading…. Or Dear Person I saw yesterday…. I would get a lot more hits but I find choosing the titles really hard. A few posts, however, surprised me by how relatively unread they are compared to the others.
Part 4: The new normal
Part 5: The thoughts that got me through
When I was writing these as part of my pregnancy story, I felt that these two combined, really got to the heart of the thoughts that helped me make sense of the whole experience. The themes in both these posts are the recurring ones that I kept coming back to in my darkest days and reminded myself of regularly. I guess I thought it would be these that tied the whole story together, so it is interesting to see that they are read infrequently.
Breastfeeding Highs and Lows
I’m pretty sure my bad title choice on this one doesn’t help but I thought new parents may get something out of the intense feeding story I had. I wanted to show new parents that it was definitely possible to breastfeed a baby with Down syndrome and that the troubles parents may face are the same as any parent could face.
The most popular post I have written by far was What Do We Lose if we Cure Down Syndrome. It was written in response to a new scientific discovery to turn off the extra chromosome in a Petri dish, which led me to muse about what implications this may have if it was applied to humans. I loved reading all the different comments and viewpoints which meant I kept rethinking and challenging my own position over and over.
The second most popular has been Finding the Right Words. I wrote this at a time when I really struggled with how to best advocate for my son when people said comments that made me cringe even though they intended to be kind. I think this dilemma is really common for most parents of kids with Down syndrome and I’m thrilled that people have shared it as a polite nudge to their friends and family to avoid the confrontation!
Another popular one has been my birth story, The Day I met Wade. No surprise there, everyone loves a birth story!!
My personal favourite post is My Mother’s Hands. I was quite emotional when I wrote this as I thought about the shared experience of motherhood, the way motherhood changes us in body and soul, and the inherited habits and quirks that are passed from mother to child through my family.
So Happy Birthday little blog, and I thought I would celebrate with a new blog photo. So hard to get him to sit still long enough these days! Thank you to everyone who has taken the time to read, comment, like or share. I get such a kick out of knowing that someone in the world is reading our story and maybe changing what they thought they knew about Down syndrome.