by Natalie Waddell
I am Natalie. I live in Brisbane with my husband, two sons and two 4 legged Oodles. My youngest son, Tom, has 1P36 Deletion Syndrome. He is a determined, out-going, cheeky, stubborn and mostly happy tween! He is also non-verbal and incontinent, has complex health issues, receives his nutrition via tube, unable to walk independently and loves to wake up in the middle of the night and throw his own bedroom parties! This is part of my story.
Talking about grief.
This year marks twenty years since my mum passed away after bravely battling cancer, and also twenty years since I married my best friend. It’s fourteen years since I said goodbye to a career I loved and thirteen years since we welcomed a healthy baby boy into the world. It’s eleven years since we welcomed a baby boy with complex disabilities into our family and almost two years since my Dad passed away after a long illness.
So much joy. So much to celebrate. So much grief. Cumulative grief.
Grief is heavy – sadness, anger, guilt, loneliness and pain. It has often drained my vitality cup. No matter how much I have tried to ignore grief or just didn’t recognise it, it has always found a way to make me sit up and take notice. So, I decided to start talking about it.
I am generally a grateful and happy person, but in more recent years, I had become aware that I could not remember who I was before grief had become part of my life. I had also become acutely aware that there was something else in my heart trying to get my attention and I made a decision to find out what that was.
Stripping back the layers of grief has been good for me. Naming it, remembering why it is there and giving it some relevance has helped me to understand it. I have been able to reflect on who I was before grief became a part of me, and be more conscious about who I am.
There is grief around having a child with a disability. Even after almost 12 years, it can strike at times that I least expect. Watching my child demonstrate sheer determination and knowing his body can’t keep up. Inequalities in our education system. Knowing how much he would love to play team sports, but never will. Bureaucracy where there should be support. Accepting that I can’t make the world truly accessible. Longing for real sleep and knowing it is not really attainable. This is the grief that brings tears and comes in ebbs and flows.
There has been less obvious grief in everyday life events. The moment I truly realised I couldn’t “have it all” and something had to be sacrificed. Turning 40. Perimenopause. Frown lines that weren’t there yesterday. Cuddly sons who become teenagers. This is subtle grief that I have been able to move through more easily.
At times, grief has been debilitating. When my baby stopped breathing while in my arms and seeing him on life support, being told my child was unlikely to live into adolescence (he is still here though!), watching parents lose their independence and loss of loved ones. This grief can be gripping and has engulfed me at times.
Fear in my mind has sparked panic and grief before an event has even happened. Worrying I cannot protect my child from harm because he is vulnerable. Imagining a life where one of us exists, and the other does not. This grief is about the future.
My journey to understand grief and prioritise working on my personal development can feel indulgent and uncomfortable at times. It is difficult to share with others (it’s not classic coffee conversation!), but I am finding there are support networks out there. I am learning to speak kindly to myself and look to the future with greater hope.
It’s a work in progress and life gets in the way often, but I am finding things that work for me. Taking ownership of my mental health is a number one priority. I have a great General Practitioner and I drop my bundle when I need to. I see a supportive counsellor from time to time. I made friends with exercise – yoga to calm my mind and connect with my breathe, and boot camp for strength and endorphins. I take vitamins daily. When a question arises, I find a podcast to explore it. Occasional massage and acupuncture. I am learning that wine is not my friend and I have a goal to meditate more.
I am connecting with my intuition and heart more and I am not letting my busy mind rule as often. I better understand my reactions to people and situations. I feel more empowered when dealing with stress and I have more energy to be present.
I accept that raising a child with a disability and/or chronic health issues is a journey that comes with on-going challenges. I celebrate the blessings, love and opportunity in my life and I also grieve. I am choosing to keep doing the work on myself so I can create the life I want. We only get this one chance and I want to make it worthwhile.
