Galway-based acupuncturist Aedín Collins wasn’t exactly planning a family when she and partner, chef Dominique Majecki, first learned they were expecting a baby. Nor was she prepared for the news, after delivery, that their daughter Róisín had Down Syndrome. From shock and upset to understanding and action, Aedín now blogs about her adventures with her beautiful daughter Róisín, aka Mini, at http://miniandmum.blogspot.ie/
Here, Aedín answers Her.ie’s questions on her journey so far…
How did you feel when you found out you were going to be a first-time mammy?
Terrified! I had never planned on having kids. I’m not one of those child-friendly adults; I’ve always been awkward around them. Because Mini wasn’t planned, I felt nearly embarrassed telling people. It was an odd time for me. I know now why pregnancy is so long, because it can take nine months for you to get your head around the idea that you are going to become somebody’s mammy!
When did you find out that Róisín had Down Syndrome?
We found out pretty much straightaway after her birth. Her arrival was a bit dramatic, in that it was a very fast labour (only four hours), and she was a Ventouse delivery. Her heartbeat dropped so the medical team decided that an assisted birth would be necessary. When she came out, she had the umbilical cord wrapped around her neck. When I first laid eyes on her, I did think her facial features were a little unusual but put that down to the use of the Ventouse. Not long after, another doctor was called into the delivery room and it was she who made the diagnosis, describing it first as a ‘genetic abnormality’ and then mentioning Down Syndrome but saying they would have to conduct tests to confirm this.
How did you feel?
I remember one of the midwives asking me if I understood, as I was too shocked to speak. I mumbled that I did, but deep down I didn’t understand at all. I was only 29, there was no one with Down Syndrome in either of our families, and in the womb Róisín had seemed so energetic and active. She really burst onto the scene and that was not how I thought of individuals with Down Syndrome. In my mind, they were rather slow, lumbering creatures. Of course, I quickly learned that all these assumptions I had had about Down Syndrome were incredibly wide of the mark and that really I knew very little about it.
What I’ve learned is age really isn’t a factor-it can occur in babies born to young and older mammies alike, only 4% of cases of the syndrome is hereditary and that babies with DS are incredibly bright little things.
It took having a child with DS for me to fully realize just how ignorant I was of the syndrome and how little I knew about it. Once Róisín was cleared by the cardiologist (47% of babies born with DS will have a congenital heart condition) and discharged with a full bill of health we got to bring her home and really get to know this remarkable little being we had created.
It was then that, a little seed crept into our heads that would over time take root and blossom into a powerful thought; ‘Down Syndrome really isn’t so bad, just a little different.’
When did you decide to start blogging about your experiences with Róisín?
It took a while for me to get to the ‘acceptance’ stage. Róisín’s diagnosis wasn’t actually made until 3 weeks later on my 30th birthday. The paediatrician rang from the hospital and as her number flashed up on my mobile, for an instant, I thought that this was going to be the most amazing birthday present ever and she was going to tell me that my baby girl didn’t have any syndrome. But she did, and that was that. Dom had wanted to wait until the diagnosis was confirmed before we told people, up until this point it was only close family members who knew. So we started telling friends and extended family. It took quite a few months, as some people I wanted to tell in person but our friends are fairly scattered, and Dom is French. We didn’t actually get to break the news to most of his family until we travelled to France when Róisín was 3 months old.
We had her christened when she was 5 months old and there was a lot of planning for that, which took time. It was only after the Christening that I realised I hadn’t fully dealt with the situation and thought that blogging might be like a form of therapy that would help me get there.
Did you rely much on the Internet for information when you were pregnant/after Róisín was born?
One of the first things the social worker at the hospital said to me was to not to go on the internet to do my research on Down Syndrome, but that’s of course where I went and got bombarded with the most negative thoughts and information and ended up in floods of tears. It’s akin to trying to self diagnose yourself-you type in your symptoms to Google and horrible diseases like cancer pop up when in reality all you have is an infection that will take a few days bed rest to cure.
The Internet is full of worse case scenarios for the health of kids with Down Syndrome and full of people with very limited and ignorant views of them. When I had pulled myself up off the floor, figuratively speaking, I visited the Down Syndrome Ireland website which explained things in a much better way, and with a great deal more positivity.
What has the reaction to your blog been like?
It’s been fantastic-I expected a great response from family and friends but it’s reached a wider audience and Mini seems to have her own little cult following going on. I’ll meet people at parties and they’ll politely acknowledge me, until a mutual friend will mention that I’m Mini’s mum – then I’ll often be met with a huge smile from them and a gushing report of how much they love the blog. I’ve also connected with a whole host of wonderful people while tweeting about being a mum through Twitter. I was slow to get on the Twitter train but it’s definitely my favourite social media site-there’s bagloads of info out there from parents who have been through it all and more and it offers a great support network. All this from complete strangers too – bizarre but amazing!
What are your hopes for Róisín’s future?
I hope she’s healthy, and has a long life, and I hope that whatever she does, it makes her happy. She’s such a dynamic little force of nature and has been blessed with a beautiful, adventurous spirit and I hope the world continues to respond to her with the love it has for her now.
