Miracles unfolding one breath at a time
Every expectant mother has that little sliver of fear as she clasps her hands over her belly, hoping and praying that her baby will be born healthy.
I was no different and when I had a scan and they said they couldn’t find her foot and I needed to come back for another scan in a few days, my heart was in my throat and I instantly imagined the worst.
If only I knew then what was to come.
On the second scan they confirmed the diagnosis of a clubfoot, a common and treatable condition. Chiara was my second child and the corrective clubfoot treatment began when she was only 10 days old, causing a lot of pain for her little fragile body. The stress only increased over the next five months with many hospital visits, a marriage cracking under the pressure of too much stress, tears that could have ended a drought and very little sleep.
Through this haze of exhaustion, I started to feel that there was something else wrong with Chiara. Her body wasn’t moving as you’d expect, even given her clubfoot issues. I ignored the assurances from others that said she was just fine, trusted my intuition and I pressed for an appointment with the pediatrician.
When the test results came back, I was in disbelief.
I sat across from the genetic doctor in shock as she compassionately discussed the future of my baby. It was as though each basic human function that we take for granted was being taken away from my beautiful daughter. The news worsened at every stage of her diagnosis. Bilateral Perisylvian Polymicrogyria, Microcephaly, Quadriplegic Cerebral Palsy and Developmental Delay. The odd’s were well and truly stacked up against her.
The grief felt unbearable.
All of a sudden we were sucked into a vortex of medical appointments and scary unknowns.
Between the after diagnosis and acceptance stage, the numbness and shock gave way to grief, sadness, anger and even more exhaustion.
My mind was spinning with medical conditions, possible solutions, potential therapies, hospital visits, conflicting information and huge life decisions.
It’s just not right. Life isn’t fair. Why her, why me, why us?
But after many month of suffering, I realised that beating the “life isn’t fair” drum wasn’t going to get me anywhere and I didn’t have the energy for it anyway. I had beautiful little warrior who was relying on me more than ever.
I reached out to the Special Needs Parenting community and I drew strength from the warrior mamas out there who inspired me so much.These warrior women found beauty and joy in the midst of heartache and stress. And they helped me find my own footing in this new “after diagnosis” life.
If a miracle is a shift in perception, then the honouring of this beautiful motherhood journey is the final stage of acceptance. It’s when you vow that the life you’re going to build is based on what is, not on what you wish it were.
That’s where the appreciation, the joy and the miracles abound. Bringing a spoon up to their mouth unaided is a cause for celebration. In fact, it’s a huge champagne popping deal! And that’s how we cope, looking for the gratitude, for the learning and for the community to help pull us through the rough patches.
Our family has come through so much, with the stress and exhaustion, causing cracks at times. We’ve seen the ugly side to burn out and have readjusted our lives to cope. Our determination now is to not only survive, but also thrive, so we enjoy the life we have – steadfastly seeking out and celebrating the miracles as they unfold.
Disability. Brain-Injury. Special Needs. Whatever diagnosis you have to deal with, it weaves into the tapestry of your story. Unfolding differently for each family, there’s unity and common ground through the stages of grief, love, acceptance, hope and everything in between.
The fact that you’re even reading this far means you’re looking for answers, for reassurance, for support and hope – whether it’s for you or for people you love.
After experiencing overwhelm and burnout after my daughter was diagnosed, I learnt very quickly that unless I took time to look after myself, I wasn’t going to be able to cope with the huge parenting task ahead.
This is a space to slow down, reconnect to what is most important to you and gather all the tools you need to thrive, not just survive through this extraordinary motherhood journey.