Melissa’s Story
I couldn’t get the words out. I burst into tears when I was asked to share my birth story at mothers’ group. None of the other women could relate, and I felt like I didn’t belong. Which is why Kindred’s peer support is so crucial.
When I was pregnant with my son David, I was admitted to hospital at 28 weeks because his growth had slowed. We were given statistics about Cerebral Palsy, Autism and Intellectual Disability. And told that it was likely, David would face more than one of these challenges.
These were difficult conversations, and we were asked to make potentially life-changing decisions. But I just knew that above all, I wanted my baby. Thinking back to this day still brings tears to my eyes. It was just so hard and so emotionally overwhelming. No one I knew had gone through anything like this. There was no one who could understand what I was facing. I was alone.
After a few weeks in hospital one day, the doctor said, ‘he’s in distress, we need to get him out’. David was born via emergency cesarean at just 30 weeks. He was incredibly tiny and spent the next three months in NICU. I was so afraid.
Under a microscope
Even after David was discharged, there was a feeling like we’d never really left hospital. A nurse came and visited us at home every day or two. It was an intense amount of pressure. It was like David was under a microscope with all the checks and constant monitoring. On one of these visits, I was told that David had lost two grams (which is the equivalent weight of a paperclip), and that if this continued, he would have to go back to NICU.
One day I just broke down and said I couldn’t do this anymore. After all we had been through, the stress was just too much. I wasn’t coping. David and I went to stay at My Mum’s house in the Blue Mountains.
David’s first major developmental assessment was for Cerebral Palsy at 5 months old. He was still so so tiny, and I felt an overwhelming sense of fear. Fear of the result, fear of what it could mean for the rest of his life, fear of the unknown. Looking back, I wish I could have spoken to someone raising a child with Cerebral Palsy, perhaps I wouldn’t have felt so overwhelmed.
Travelling a different journey
It was recommended that I join the local mother’s group. I didn’t think about it too much then; it was just what you’re supposed to do. So I went along, and there were 20 of us sitting around in a circle with our babies in our arms. The woman leading the group asked us to go around and share our birth stories. When it came to my turn, I just didn’t say anything; I wasn’t ready to share my experience, which was still so intense and raw, with total strangers. By the end, she returned to me and said, ‘Oh Melissa, you didn’t share’…. I opened my mouth, but I couldn’t actually get the words out. I just burst into tears.
None of these other women could relate. Another other Mum there shared that her baby had been in NICU for two days. And then she looked at me almost with a look of shame as if her experience was nothing in comparison to mine. And in reality, it was vastly different. I realised that everyone has a story, but we are all travelling very different journeys.
They were lovely ladies. But this wasn’t a space I could seek connection and support. And that realisation was definitely hard. I just never imagined I wouldn’t be able to relate to other Mums. It’s awful feeling like you don’t belong in a space, and your child doesn’t belong. This is why connecting to communities like Kindred is so important.
Finding a place to belong
David was recently diagnosed with Autism. I’ve noticed the difference in having a community to reach out to. It’s like night and day. I feel so much less alone. Kindred has helped me feel supported in so many ways! Hearing other people’s stories, especially those with similar experiences or further in their journey, is comforting. And seeing the same faces each week makes me feel comfortable sharing my story too.
Kindred’s peer support is so crucial. Otherwise, who do I connect with? It’s not like I can have these conversations with other parents I meet at the park or playground. This is why having a safe and supportive space to connect with parents raising children with disability is vitally important. I’ve learnt so much through the perspectives of others.
I’ve built my knowledge through Kindred’s workshops and events. It’s given me so much confidence when facing difficult situations at the hospital, doctor’s appointments, daycare or even out in the community. Through Kindred, I have a better understanding of David and the tools to help him navigate the world. I feel so empowered as a parent.
Across NSW alone, there are more than 100,000 children with disability. Many of these families live in rural and remote areas or have limited family and financial support. Please help us reach more families in need by making a donation today.
