You’d be mistaken by thinking that Mothers Day is a media free-for-all to write about the way we should or shouldn’t acknowledge the day. I’ve only been a mum for the last 8 years – not really a veteran but not necessarily a newbie. Truth is I still haven’t connected with the idea that Mothers Day relates to me, I only think of it in terms of my own mum.
So in my way of exploring the concept – that for every significant relationship in our lives spaces exist within them – I have asked three lovely mums to tell the story of their space in between.
So over the weekend follow #tsibmums. They aren’t your typical carnation -filled narratives. They are real and honest spaces created for us to respect and engage with.
Thank you to those who got in touch with an idea to share x
Michelle, tell me a little about you?
Let’s see I’m 40, turning 41 on Mother’s Day. I’ve been married to the love of my life for 20 years and have two boys, now 16 and 19. Oh and one fur baby, Freyja our Great Dane. Can’t forget her. Prior to becoming ill I was working as neuropsychologist at a local hospital. In fact the first time I realised something was wrong was at work. I was preparing for a meeting with a patient and ended up being wheeled down to the hospital emergency department unable to stand or maintain my blood pressure and heart rate. A year later I was diagnosed with a form of dysautonomia, which occurs when the body’s autonomic nervous system malfunctions. That was eight years ago. Since that time my illness has progressed and I have developed a progressive neurodegenerative form of dysautonomia which means I can nolonger work, drive, or walk-unaided, and spend the majority of my time at home. Thanks to the wonders of the Internet I am still able to be part of the wider world and am involved in the chronic illness and disability community both here in Australia and abroad. I also run a personal blog where I share my journey with dysautonomia. And am raising money for research into Dysautonomia at The Baker Institute here in Melbourne.
When you were diagnosed your kids were right in the middle of their childhood – how did the diagnosis affect (or not affect) your family?
It was a difficult time. Diagnosis is notoriously difficult and for a long time I knew I was ill and becoming sicker, but didn’t know why. I thought I was sheltering my children from the worst of it, but children are quite savvy. My two knew something was wrong and decided I was dying, but didn’t want to burden me with their fears. When I finally heard that they had been carrying such a burden to protect me really tore my heart out. From that point on I decided that I’d be open and honest about my disorder. We decided to be proactive from that point on and also worked out plans with them for when I should pass out or start to feel ill. It gave them a sense of purpose and power over the situation. Over the years the nature of the information we gave them changed to what they required and we discussed it with them whenever they asked (often at the oddest times). Now both have been to appointments and have a clear understanding of my disorder. With more hospitalisations hiding is not possible, so we tend to deal with it head on. Openness can be hard but I have learnt that my children are very resilient.
Has the illness impacted on your job as a mum – in what ways?
Particularly, in the beginning I beat myself up for all the things that I was unable to do for them. From not being able to attend sporting events to sometimes not able to make them their lunch for school or sit through a book reading, my health meant that I was unable to do many of the typical mum things. Before I became ill we would have what was known as MLT Time (Mum, Thomas and Liam Time). Once a week we’d head to a cafe and have milkshakes, lime spiders and coffee and chat all about their week. It was a dedicated time for us. When my illness hit hard that stopped. I didn’t realise quite how much it mean to them until my then 15-year-old eldest admitted he really missed it. After that we made time at home for MLT Time. The guilt associated with things like that is still huge and it hits that I can’t be the mum I want to be, the mum that I was. I’m frequently the youngest mum out of their friendship groups and can do the least with them. We have had to negotiate a new relationship of mother and child and it’s still a work in progress. It is hard to accept that our roles are reversed these days and my children are my carers. I don’t want that burden for them. But there is no choice. We are very close and they have become mature and compassionate young men I just wish that my illness wasn’t the catalyst.
What does mothers day mean in your house?
Mostly we are a low key household. I don’t like fuss so it tends to be quiet. It is about being with my boys but it is also a time they cherish to show their love. We don’t go out as it’s too hard for me, so it’s usually breakfast in bed, coffee and sitting on the couch watching a mum show. Mother’s day is special but in many ways the small things they do day-to-day are more important for their thoughtfulness.
If you could go back to the Michelle before diagnosis what would you say to her – what have you learnt along the way?
I’d tell that Michelle that it’s going to be hard but you can do it. It sounds trite but we are often stronger than we could ever imagine and we can pass that and other lessons onto our children. I think the greatest thing I have learnt is that the love is far more important than the events. Children remember how you made them feel far more than you didn’t make their footy match on that day in June 2009. That it’s the quality of those day-to-day interactions that matters. Also that the way I deal with my illness helps shape how my children deal with the world. We teach so much through our actions and it’s often not until they are older that you appreciate how much it shapes them. They know bad things can happen. But they also know we can make it through and be okay. And most of all, sick or not we can still instil in them the lessons that will help them grow into caring and resilient adults.
What words from Michelle resonate with you the most? I think having children who pick up on whats happening before its spoken out loud reminds me that the effort I put into communicating the world and all its spaces to my own kids is the right way to go.
Thanks Michelle x