She Let Me Cry - Finding the Right Support for Cooper

After the birth of Cooper, the next battle was dealing with professionals who didn't align with me. Our first ENT was a test in patience and persistence. When he told me there would be no cure for Cooper's hearing loss in his lifetime, his tone and narrow-minded attitude didn't sit well with me. Angry and scared, I picked up my little bundle and walked straight out of there. I knew I wasn’t settling for that answer. I was determined to find the best in the business.

I reached out to every professional I knew, seeking recommendations for top ENTs in the country. My chiropractor, who was more than just a healthcare provider, had a friend who recommended a highly regarded ENT. Determined, I made sure we got an appointment with him. When we finally secured it, I felt a small win on our books, and I could breathe a bit easier.

I wanted answers—how, why, and what could be done. I insisted on genetic testing, a process fraught with frustration and delays. Initially advised against it due to cost and low chances of finding the gene responsible for hearing loss, I pushed relentlessly. When the first test came back inconclusive, I wasn’t convinced. They had only tested a small fragment of genes, so I sought another geneticist. I persisted until they agreed to send a larger panel to Finland. The six-month wait was agonising, but at least the process was in motion. The determination of a mother is beyond what reality can comprehend.

As time went on, we became immersed in the healthcare system—ENT appointments, hearing aid fittings, and geneticists. Watching them draw blood from my tiny baby was heartbreaking, and I carried immense guilt. My early journey of motherhood didn't feel 'normal.' While other moms were at coffee groups or the park, I was either at hospital appointments or on the farm seeking solace and distraction. The farm became my refuge, where I found comfort in family and the space to release my emotions. Busy with farm tasks, with Cooper snug in my jacket, was the only time I felt any peace.

We then got our deaf adviser, Sue, who was exactly what I needed. She let me cry and shared positive stories about other deaf children thriving. Gradually, I began to see the support within the deaf community. Kids with hearing loss can lead very normal lives with a little assistance. This realisation helped me shift my perspective. At least it wasn’t life-threatening, and there was a community ready to support us.

It was a challenging journey, but with persistence and the right support, we began to see a brighter path ahead for Cooper.