“Nicholas was an absolute gift in our lives, and given the choice, i wouldn’t have changed his extra chromosome.”
We are honoured to have shared a heart-to-heart with Annie Love. Superhero mother, Brisbane business owner and creator of beautiful blog Mummalove. We talked about the ‘the ups and downs’ of the rollercoaster that is life and the unconditional love she has for Nicholas.
Tell us about your background
I am one of seven children, with twenty years between the eldest and youngest siblings, and our big Catholic family all grew up together in Brisbane. My parents have been married for over 50 years and there are now twenty grandchildren between us. We all get along ridiculously well and love spending time time together.
After finishing school at a small Catholic girls highschool, I studied Business Management at UQ for a couple of years before jetting over to London to work and travel overseas. When I returned, I started working full time and finished my degree part time. I’ve always had a rather evolutionary career, but have mainly worked in Event Management, Advertising and Marketing roles.
I met my husband, Ben, when we worked in the same city building, and we married just before I turned 25. We lived and worked for two years on Hayman Island and then travelled overseas for a few months before returning to Brisbane, where we started our business, Grassroots IT, from my parents’ garage. We have now been married over 13 years, running a business for 11 years and have had three beautiful sons, Sam, Charlie and Nicholas.
Parenthood has thrown us some significant heartache amidst the joy over the past nine years. We miscarried our first baby, before being blessed soon after with our eldest son, Sam and then Charlie 21 months later. When we were pregnant with our third baby, Nicholas, we discovered through prenatal testing that he had Down syndrome. Within two years of that discovery, Sam was diagnosed with Acute Lymphoblastic Leukaemia at the age of five and will finish treatment in November, over three years after the diagnosis. Earlier this year, our beloved Nicholas passed away after a sudden illness, and we are still learning to live without him.
Why did you decide to create mummalove?
I have always loved to write, but didn’t feel as though I really had the energy to do anything particularly creative when I was raising three children in under four years. But when we discovered through prenatal testing that our third son had Down syndrome, writing helped me process the diagnosis and the rollercoaster of emotions that came with it. I decided to start a blog and published my first real post about the prenatal diagnosis, but only really told close friends about it. Over time, I could see the value in sharing our story more widely in order to help other parents process a diagnosis in their own family and see the joy that our family experienced having Nicholas as part of our lives. Over time, I have continued to share the ups and downs of our parenting journey with the beautiful Mummalove tribe.
How do you see mummlove developing in the future?
Mother Theresa is attributed with the sentiment that ‘we can’t all do great things, but we can do small things with great love.’ I don’t have any particularly grand visions for Mummalove, but there’s a lot of love behind it. Parenthood can be hard and exhausting, even without the dramatic episodes we’ve managed to get through in our time, and I want to continue building a community where we can share real and honest stories of family life, where we can support each other in our imperfections, and where we can focus on achieving small things with great love.
Before kids, what kind of family unit did you dream of having?
Being one of seven siblings, I always imagined having lots of children, both boys and girls. As a kid, I used to love dreaming up the names of my future children. But I needed to alter that vision slightly when I married Ben and I don’t think he was quite as keen as I was on the idea of a big tribe in a minivan 😉 We compromised on three children, and then ended up with three handsome boys.
Describe your relationship with your boys.
I have always wanted to be a mother and be able to stay at home with my children, as my Mum did with me. As intense as those early years were with three small boys at home under school age, I have cherished being able to spend so much time with them and feel blessed with the close relationship we have forged. As they grow and become less dependent on me, I love watching their relationship with their Dad develop more deeply and stronger, but I know they’ll always have a special place in their heart for their Mum. Nicholas and I had an extra special bond and the love between us is like no other. He made me feel like a celebrity every time I walked in the room. I love hanging out with all my boys, playing Lego and building cubbies and going scootering down near the creek. I have the best ‘job’ in the world.
What did you know about down syndrome before you had nicholas?
As I was growing up, we had a neighbour, a few years younger than me, with Down syndrome, so I guess I had a certain vision of what having Down syndrome meant. But, really, I just knew one person who happened to have Down syndrome. I chose to read blogs and other family stories while I was pregnant rather than too much of the textbook-style information about Down syndrome. I decided that Nicholas was going to write his own story and reading a whole stack of medical information which may or may not ever apply to him wasn’t good for my headspace, so we just took the approach to live one day at a time and learn about Nicholas along the way.
Biggest challenges/joys of having a child with down syndrome?
One of the biggest challenges of having a child with Down syndrome is possibly the parental guilt that is always questioning whether we’re doing enough of the right things for our child. There is a level of overthinking, second guessing and internal dialogue that isn’t quite the same as for our typical children. And another hurdle is dealing with other people’s outdated views about Down syndrome and expectations on what a person with Down syndrome can achieve. We have come along with regard to inclusion for people with Down syndrome, but there is still a long way to go.
“There is a level of overthinking, second guessing and internal dialogue that isn’t quite the same as for our typical children.”
But, honestly, the incredible joy of having Nicholas in our life has far outweighed any challenges that we have experienced associated with Down syndrome. We have met an amazing, international community of people through our children who rock an extra chromosome. Nicholas helped me to be present, to slow down, to enjoy each and every milestone and achievement with him. The generalisation that people with Down syndrome are ‘always happy’ isn’t accurate, but most people with Down syndrome that I have met have an incredible ability to live in the moment and a sense of inner joy that many people never attain. Nicholas was an absolute gift in our lives and, given the choice, I wouldn’t have changed his extra chromosome.
A snapshot memory of nicholas.
At bedtime, Ben or I would read a story with Nicholas in his bed, sing ‘Jesus Loves Me’ and then lie with him for a few minutes until he fell asleep. When we thought he was asleep, we would quietly roll out of his bed in stealth mode and sneak out of the room. Even when he appeared to be sound asleep, he would seem to sense when we were leaving and quickly wrap his arm around our neck so we couldn’t escape. It was possibly my favourite moment in the day.
When did you lose Nicholas and what has helped you to grieve?
Nicholas passed away on 2nd May 2016 after a three week stay in PICU. After being a bit out of sorts for a couple of weeks, he was admitted to hospital late one Monday night with what ended up being a Group A strep infection which put his body into septic shock. Over the course of the next few weeks, he faced a number of life threatening complications and, although he put up an incredible fight, we never got to take him home. We’ve been living without him for nearly six months now.
“Nicholas helped me to be present, to slow down, to enjoy each and every milestone and achievement with him.”
Grieving is such a personal thing and I am completely winging it, just taking it one day at a time. I watched a lot of Netflix in the earlier weeks. I don’t consider myself particularly sporty, but it has helped my headspace to get out and exercise, so I have been riding my bike, doing pilates and playing social netball. I see a counsellor once a week. I try to write. I spend quality time with Ben, Charlie and Sam. I retreat into my own space whenever I need to. We have loads of photos of Nicholas all around the house and Sam set up a little altar with candles on it where we keep some of his special things. Nicholas is still very much a part of our family and he still shines his light into the world in different ways.
Advice for mums raising a child with down syndrome?
I think we all grow up with a fairytale vision of what life will look like and being told your child doesn’t fit into society’s definition of ‘perfect’ can be devastating. I totally understand that feeling of being so lost and terrified after receiving a prenatal diagnosis. But I also know how much that feeling changed when we were able to meet Nicholas and see him as a person, rather than a diagnosis. So I suppose my first bit of advice would be for any parent facing a new diagnosis to focus on the baby, rather than the ‘label’ your child has been given. The fear of the unknown may override your connection with the baby at first, but the love will come and it will be infinite and it will get you through any hard days ahead. My other advice would be to take one day at a time and be present with your child.
“For any parent facing a new diagnosis… focus on the baby, rather than the ‘label’ your child has been given.”
Right now, if your child is two, you don’t need to worry about what life is going to look like when he/she is 15. Focus on today and soak in every bit of joy of being with your child. Take in as much information as you need to about what might give your child the best possible opportunities, but don’t do it at the expense of being with and enjoying your child. Make connections with other families in the DS community. You don’t need to be best friends with everyone just because your children have the same number of chromosomes, but find your tribe. Be with people who understand what it means to be a parent of a child with Down syndrome, who have a similar approach and who will love your child almost as much as you do. Build each other up, celebrate the joys and support each other through the challenges.
Advice for other parents who will experience losing a child?
On the days when it’s too hard to do anything else, focus on breathing. There’s no rulebook for grief and most people can’t even begin to understand what you’re going through, so don’t try to fit into other people’s expectations of what your grief should look like. Be where you are. Take one day, or even one moment, at a time as you travel a journey no one should ever have to face.
“Focus on breathing… There’s no rulebook for grief”