Through Down Syndrome, childhood leukemia and profound grief, Annie Love has discovered real resilience and faith. Her story is a reminder that no matter what, love is all there is.
I grew up as the sixth child in a busy, noisy, chaotic and wonderful family of seven children. I followed the somewhat traditional path of finishing school and going to Uni (to do a degree in Business Management), but I never really knew what I wanted to ‘be’. I ventured overseas for eight months when I was twenty, then returned to finish my degree part-time while working in an admin role. From there, my working life progressively evolved as I took on various roles in advertising, marketing and event management, before my husband, Ben, and I started an IT consultancy in Brisbane.
However, although I wasn’t sure what I wanted to ‘be’, I have always wanted to be a Mum. I was over the moon when my Mum had my baby sister when I was six years old and I had the opportunity to ‘play mum’ to a real baby, instead of just my 13 Barbies and collection of beloved dolls. And then I relished being an aunty to all my nieces and nephews. But, having said that, Ben and I were married for five years before we decided we were ready to start our own family, and I’m really glad we had that time together as a married couple before having babies.
Our first baby, Sam, was born five days after his due date at a hefty weight of 4.3kg.
For the most part, I had loved being pregnant. I have a really distinct memory from the few weeks after having Sam of what I termed the ‘umbilical cord sensation’, where this baby was no longer conveniently tucked up inside me but we were still attached – I had to think about him and feed him and be with him every moment, 24/7. It was quite overwhelming to begin with. Sam didn’t sleep through the night for six months, so I remember feeling ridiculously tired, and having a new little family member definitely took its toll on our marriage. But despite the challenges, I loved finally becoming a Mum. Being at home with Sam was exactly where I wanted to be, and I was grateful that he fed well and was such a happy, contented baby boy.
Pretty much everything changed when the second came along! We fell pregnant with Charlie just after Sam’s first birthday, so our first two boys are 21 months apart. I actually didn’t spend a great deal of time in the lead-up worrying about having two children so close together, but in reality, I found our new family landscape REALLY hard. Sam was not a huge fan of the new baby brother who’d interrupted his happy life being the sole focus of his two doting parents. He acted out his frustration through violence and, amongst other things, poked Charlie in the eye daily. I actually wondered if Charlie would have two functioning eyes by the time he turned one! And yet, somehow, Charlie still delighted in Sam’s company. I’m thankful that Charlie was such an easy-going, happy, smiley baby who slept well, or I may have gone completely over the edge. I decided that there would definitely be a MUCH bigger gap between Charlie and our next baby. But the universe had other plans.
We found out we were pregnant with our third baby quite early in the pregnancy and it was a complete surprise. We were still getting our heads around having three children in under four years when, at the nuchal scan at 12 weeks, we discovered there was a 1 in 14 chance our third baby had Down Syndrome. Some moments I’d focus on the 93% chance we weren’t having a baby with Down Syndrome and wonder whether we’d look back on this time and realize how over-dramatic we’d been about the whole situation, and other moments I would just feel incredibly sad. I spent most of the time tied in knots about the ‘what-ifs’. Eventually, we decided that we needed to know definitely either way before our baby was born, so after much consultation, I booked in for an amniocentesis about 18 weeks into the pregnancy. Two days later, we received a confirmed diagnosis that our baby did, in fact, have three copies of the 21st chromosome and therefore had Trisomy 21, or Down Syndrome as it’s more commonly known. In all honesty, we were devastated.
The next 22 weeks of the pregnancy were very hard and lonely, and I talk about that time now as ‘living through the darkness’. Although we had decided we would proceed with the pregnancy despite the results of the amnio, being confronted with a definite diagnosis certainly put a new perspective on it. I had all the theories in the world but, faced with the reality of raising a child with a disability, it didn’t feel quite so black and white. But after many difficult conversations, we knew that we just had to proceed through the darkness in the hope that it would all be okay.
Our families and close friends were very supportive and, although they felt sad with us, they filled me with the confidence that we were infinitely capable of loving and nurturing our Baby Love, regardless of how many chromosomes he had. They cooked us meals, sat on the floor and cried with me, and weren’t afraid to ask the difficult questions when they needed to be asked. I took solace in the personal stories from blogs of those in the Down Syndrome community and found connections in online forums with other parents who understood what we were going through. I started writing and began our own Mummalove blog.
Ben and I both dealt with the diagnosis in different ways, and it was an incredibly difficult time in our relationship. There was a lot of silence as we both retreated into ourselves, rather than leaning in towards each other. We learnt a lot about our marriage in that time and, little did we know how much it would build our skills and strength as a couple for future challenges.
And, somehow, we got through the darkness and were rewarded with the most beautiful ‘chromosomally-enhanced’ baby boy who brought such incredible light into our lives and slotted perfectly into our family. Nicholas became a great lesson for me in how we just need to have faith things will work out, rarely in the way we expect it to, and often the outcome will be better than we could have possibly imagined.
A few months after Sam turned five, he came home from a boys’ camping trip with a fever and a swollen lymph node just near his ear. We called the home doctor, who prescribed some antibiotics, and a few days later he was good as gold. About a week later I picked Sam up from kindy and they said he’d fallen over in the sandpit and cried, complaining of a sore knee. While both ailments were apparently unrelated, the knee never improved, the lymph node didn’t go down and Sam became more and more emotional over time. Our parental intuition kept us revisiting doctors and specialists until, five weeks from the initial fever, we received the diagnosis that Sam had Acute Lymphoblastic Leukaemia. We were told to pack bags and expect to stay in hospital for about two weeks, in which Sam would begin ‘Induction’ and commence his three year treatment program of chemotherapy. At the time, Nicholas was 18 months old and Charlie was three.
Again, we were surrounded by the most amazing network of family and friends who launched into action as we faced Leukaemia with our ‘SuperSam’, making meals and helping out with babysitting the other boys when we had appointments. We had (and still do have) an amazing team at the office, who are very capable at looking after our business in Ben’s absence and allowing him the space to focus on his family. With the training ground of the Down Syndrome diagnosis under our belt, Ben and I were much better at communicating and supporting each other through this new challenge. Whenever we had hospital stays, we took turns in spending one night with Sam and one night back at home with Charlie and Nicholas.
While I would never wish chemotherapy on anyone, least of all a young child, the treatment process has brought with it unexpected gifts. Sometimes we couldn’t go out to certain places or travel because of treatment, so in many ways we simplified our family life – having more time at home together and less activities, and having holidays close by. It has taught me to ask for help when I need it, to be present and find the joy in each day, and always find things to be grateful for. We have also tried to look beyond our family unit and see how we can help other families going through treatment, such as Sam doing an annual collection of gifts for the kids at the hospital and helping with fundraising efforts for Camp Quality.
Thankfully, Sam has remained quite well throughout his treatment for Leukaemia and was able to ‘ring the bell’ on 10 November 2016 to signal the end of chemotherapy. We are delighted and relieved to see him looking so healthy and happy.
But, our challenges were far from over.
While we know that a Down Syndrome diagnosis can come with a list of associated medical conditions, we were grateful that Nicholas had been really healthy since birth. Apart from a handful of colds and minor ailments, he had barely been sick.
But on the night of his fourth birthday, Nicholas came down with a bug and was sick on and off for a couple of weeks. We had four visits to the GP and multiple tests. Just as I thought he was getting a bit better, his symptoms worsened one particular night and, while we still weren’t particularly worried, we decided to take him up to Emergency to get checked out. One doctor wanted to admit Nicholas to give him IV antibiotics and said we’d be home in about 24 hours, but over the course of the next few hours, he rapidly declined and was taken to ICU. Sadly, he never did make it home.
It turned out that Nicholas had a Strep-A infection, which put his body into septic shock. Over the next three weeks, he fought incredibly hard but faced a number of life threatening complications and passed away on 2nd May 2016.
We are still learning how to live without our beautiful boy, but I know he will always be with us in some way, encouraging us to live our best life.
Through all of this, I have learned that I am stronger than I ever thought possible and I am sure that, after being with my child as he died, I am capable of anything. I am certain there is nothing harder.
Being a Mum to two living boys while grieving the loss of my third has kept my feet firmly planted in reality. Sam and Charlie have given me reason to get out of bed on days where I’m sure I would have chosen to stay under the covers, and I am grateful for that.
I have tried to be kind to myself, taking time to be alone when I need it. I have found some solace in keeping active, doing pilates, playing netball and riding a bike. While I have found it quite difficult to write, I have utilized other forms of creativity, like hand-lettering and watercolours, to give my grief a creative outlet. I talk to a therapist on a weekly basis.
Keeping Nicholas’ memory alive through sharing his photographs and videos on social media helps my heart. We talk about him often at home, sharing funny stories and memories of things he used to do. Nicholas has touched so many lives in his few short years, and I love that his light continues to live on in the world.
And in moments where it all gets too hard, I just focus on breathing.