We all experience challenges in our lives but Annie Love from Brisbane has had more than her fair share over the past few years. Annie and her husband Ben, together with their beautiful sons Sam (7), Charlie (5) and Nicholas (3), have been on a life journey of health challenges and emotional highs and lows that very few would envy but many would respect.
Annie opens up her family life to us to share the experiences that have affected them all, ultimately in a positive way through love, sharing and caring as a family unit.
Sam was diagnosed with Acute Lymphoblastic Leukaemia (ALL) in September 2013, when he was five years old. The combination of a swollen lymph node and sore knee, which were seemingly unrelated at the time, led us to further investigations via ultrasounds, blood tests and x-rays over the space of five weeks, which all came back with results in ‘normal’ ranges. With the help of a wonderful GP and a healthy dose of parental intuition, we kept persisting and it was finally discovered that Sam had Leukaemia. We then commenced intensive chemotherapy.
Sam is doing really well now and, in fact, you probably wouldn’t guess he has Leukaemia to look at him. After nine months of intensive chemotherapy, Sam entered into the ‘Maintenance’ phase of his treatment and we are now just over half way through the three-year treatment program. He is due to finish chemotherapy treatment in November 2016.
While I consider each condition to be very different, the process of diagnosis definitely had similarities. When we first received the Down syndrome diagnosis, about 18 weeks into the pregnancy with Nicholas, we experienced very intense grief for the elusive ‘perfect’ baby we weren’t going to have. It was very difficult to have a diagnosis without the baby in our arms to fall in love with, and Ben and I grieved in different ways. We were heartbroken and had many difficult conversations. By the time Nicholas arrived, we had processed the diagnosis as best we could and just wanted to meet our newest addition.
When Sam was first diagnosed, we were devastated by the news but we went into action mode. Sam needed to spend the first three weeks in hospital, which was very disruptive for our family, and we were all physically and emotionally drained trying to keep it all together. Some days I needed to remind myself to eat and breathe. Ben and I spent alternate nights with him in hospital so that we could share our time between Sam and the two little ones, who were only 3.5 and 18 months at the time, and try to catch up on some sleep at home. Thankfully we have our own business and a wonderful team who was able to manage without Ben for a few weeks so we could focus on our family. I went into organisational overdrive, working out timetables and packing bags and finding babysitters and everything else required as we juggled. Over the next nine months, we spent lots of time at the Royal Children’s Hospital, either as inpatients or at scheduled appointments, which changed week to week based on the phase of treatment. Thankfully the hospital was quite close to our home, which made the juggle slightly easier. We had to be very careful about Sam’s exposure to illness, as his immunity was compromised by the treatment and any fever over 38 degrees would mean a hospital stay. We learnt some very big medical terms very quickly. But, as heart wrenching as it all was, we very quickly adjusted to our ‘new normal’ and tried to be consoled by the fact that 95% of children diagnosed with ALL are cured.
These days, Leukaemia and Down syndrome affect our family in different ways. Sam has to take daily oral chemotherapy medication, which he copes with really well, and his appointments are now only once per month, so much easier to plan around. He is generally pretty healthy and rarely misses school, but we try to be as proactive as possible in boosting his immunity to avoid unnecessary stays in hospital and, without wrapping him in cotton wool, we do try to limit exposure to environments where shared bugs are more likely. While we try not to let Leukaemia dictate our lifestyle, we are pretty adept at changing plans quickly as required! I still battle anxiety over Sam’s condition, which seems to increase as his treatment continues, but it is just something I have to learn to manage.
With regard to Down syndrome, we are forever changed because of the diagnosis but, to be completely honest, I feel like almost all of these are positive. We have met an amazing community of people, and we have made lifestyle changes to promote Nicholas’ health and development, which I believe are of benefit to the whole family. We probably have more appointments than the average family (between physio, speech therapy, occupational therapy, osteopathy, biomedical GP and chiropractic care!), but we also think lots of home time is important, so we balance out appointments and don’t overschedule our lives. Nicholas is not yet talking like an average three year old, but is a great communicator and has possibly made us slow down and be more purposeful in our communication. We celebrate every little milestone. The realist in me wants to throw in a ‘things may get more difficult as he gets older’, but we just take each day as it comes. We are learning every day and just feel lucky that we have Nicholas in our lives, 47 chromosomes or not.
We are blessed to be surrounded by an amazing network of family and friends.
When we shared the news of the Down syndrome diagnosis, our family and friends were all very positive and supportive. I’ve no doubt those particularly close to us each grieved in their own ways, but Nicholas has been welcomed with nothing but love. He is just one of the tribe, and loved and adored by all his extended family.
Many of our family members and some close friends knew that we were undergoing investigations about Sam’s knee, but I think everyone was shocked and saddened on hearing the Leukaemia diagnosis. But, as usual, they leapt into action and supported us without question. My younger sister, in particular, was a Godsend and assumed the position of our PA, liaising with me on behalf of other people, coordinating efforts, arranging meals and anything else we needed. The kindergarten Sam attended also organised meals and plethora of gifts and cards for Sam, as well as doing a gift collection for the children undergoing Oncology treatment at the hospital. We definitely felt the love.
Pretty uneventful these days, thankfully! Sam is our early riser and normally wakes up first, then we all get up and have breakfast together. Once we are all dressed, we head off for school (this process sounds pretty easy in comparison how it actually is most mornings!) and walk the big boys to their classrooms. Nicholas and I then swing past our local café to pick up a coffee and drive to our next destination, which is usually either playgroup, swimming, music or a therapy appointment. We then come home to play, read and have lunch and then Nicholas usually goes down for a sleep (or destroys his bedroom on the rare occasion he’s not ready to nap). I generally spend the next two hours either doing some work, preparing dinner, or the million other things a mother does in spare moments! After school, we come home for afternoon tea, downtime and homework, or head to the park with friends. By the time everyone has had a shower, Daddy is home from work and we all have dinner together, before stories and bedtime.
It’s funny how quickly you forget what your older children were actually like at each age! When Sam was three, we were expecting our third child and I definitely had very high expectations of him from a very young age – poor first child! Each of my children is very different, so I definitely have parented each of them in different ways. Third time around, and with the bigger boys now at school, I think I am a more present parent to Nicholas and we are probably more purposeful in our play together. I have the same expectations of him than I do of the other two (maybe even more so!) and he helps with jobs such as unpacking the dishwasher, watering plants, tidying up, and bringing dishes to the kitchen after meals. I think there is an innate sense of preparing him to be as independent as possible. He’ll probably want to move out before the other two do!
I can honestly say that I haven’t experienced any negativity towards Nicholas in the past three years. On occasion, people may have asked questions that weren’t completely considered, made a comment that doesn’t use people-first language or appeared to stare, for example, but my motto is always “hear the love”. I know that most people are just curious or don’t know the politically correct terms, but I always assume they have good intentions and I try to educate in a friendly way, if required. Nicholas is a social butterfly and loves to engage people by saying hello or giving them a high five, and most people respond with a big beaming smile!
With regard to the Down syndrome diagnosis, our main source of support has been other families in the DS community. Through internet forums and social media, we have connected with new friends all over the world and learnt so much through other parents who also have a holistic approach to their child’s health and development. In dealing with the Leukaemia, we have an amazing Oncology team (and associated support services) at the Children’s hospital. The Leukaemia Foundation and Camp Quality have also been fabulous in assisting us in different ways over the past two years.
Ask for help, and accept help from those who offer – don’t try to do it alone – and be specific about what you need. Communicate openly with your partner or support person. Take moments when you can to look after yourself and get a little breathing space. Don’t be afraid to seek professional help if you need assistance processing the emotions involved in seeing your child face health challenges.
When we began our own IT business, Grassroots IT in 2005, we always envisioned it fitting around family life. Ben and I worked on the business together for two years, then I stepped back when we had our first baby, Sam, and just did a few bits and pieces from home when required. While there were brief periods when I returned to the office, having three children in the space of four years made it difficult to dedicate myself to the business, and Ben built up a wonderful team who took on the roles I’d previously filled. And, to be honest, being a full time mother has always been top of the priority list for me and I’m lucky that financially we haven’t needed me to be working in paid employment. Now that Sam’s medical appointments have evened out and I have two children at school, I have returned to the office one day per week. I love having more involvement in the business again, but I do love seeing those little faces at the end of my work day!
I always enjoyed writing, but after experiencing the prenatal diagnosis with Nicholas, starting the Mummalove blog became a form of therapy and my way of processing all the emotions involved. I shared our story because I wanted other people to know that it was possible to live through intense darkness, to be completely terrified and get to the other side. Whether or not you face a significant health challenge like we have, parenthood is tough, and I think we can all learn from each other.
Mainly the ups and downs of life with my little family, and the other parents we meet along the journey.
I definitely have my non-positive moments, believe me! I am pretty lucky to have grown up with very supportive and eternally optimistic parents, so I definitely credit them for giving me, and my three brothers and three sisters, the tools to face challenges with a positive outlook. My husband thinks I have a supernatural ability to live in the moment and be happy where I am. Over time, I have become better at acknowledging the ‘down’ phases when they arise too, but I always manage to find things to be grateful for in my life, even if some days that’s harder than others.
How has it NOT changed my life?? The moment I delivered our first, 9lb 3oz baby boy into the world and we officially became parents, it completely changed life as we knew it and began the hardest but most rewarding job I had ever known. As the quote by Elizabeth Stone says, the decision to have children is momentous and “it is to decide forever to have your heart go walking around outside your body.” Becoming a mother is something I always wanted, for as long as I can remember, but nothing can prepare you for the sheer love and sacrifice involved. But I can’t imagine living without any of the gorgeous boys in my life.
After we received Nicholas’ Down syndrome diagnosis and then Sam’s Leukaemia diagnosis, we were shattered. Life changed in an instant. But after we fell apart following each diagnosis, we slowly began rebuilding and somehow we were a little stronger and loved each other more and we were able to find meaning in the chaos. They have been very tough lessons to live through, but we are thankful for the perspective both experiences given us.
We really want our children to live with empathy, and to treat everyone they meet with love and respect.
The quote by Mother Theresa has always resonated with me – “Not all of us can do great things. But we can do small things with great love.” I think all those small acts of love added together IS actually a great thing and we underestimate what an impact they can make. We want our children to know how it feels to be loved beyond measure in their own family, so they can go out into the world and continue doing small things with great love.
To read more about Annie's journey, read our article on Having a Baby with Special Needs.