“I stopped feeling isolated and alone”
“My son Jethro is four years old now. His hearing loss was identified when he was a newborn. Further testing confirmed that he had a bilateral moderate-severe sensorineural hearing loss. At around eight weeks old, he was fitted with hearing aids. My husband Aurelien and I kept plodding along from one specialist to the next… but there were several defining moments on our journey.
It felt like it was our baby and us against the world now. While I didn’t believe it at the time, I was becoming slowly more isolated. I stopped even shopping for groceries. Each time I went, someone stopped me to ask, ‘Does your baby have a hearing impairment?’ We were made to feel different – like outsiders in our own community where I had felt I belonged all my life.
While other mums talked about cloth or disposable nappies, formula or breastfed babies, I wanted to know what Ear, Nose and Throat specialist other families were seeing – and talk about how crazy fast baby’s ear canals grew. But all I got were sympathetic looks and awkward comments about how tough it must be and, worse still, how grateful they were to have a healthy baby. An audiologist organised for Isabel, a mother of children with moderate to severe hearing loss, to ring me. Finally, someone actually knew exactly what I had been through. The day-to-day practicalities of care can be emotionally and physically demanding. Yet here was Isabel who got it. She had been there and done that. And she even had me laughing about what tricks she had tried to keep her kids from eating their hearing aids.
Isabel talked about life from a holistic view and asked me about my future plans for my family. She empowered me by sharing stories about some instances where she had to be the advocate for her kids. I asked for her advice, but she was very careful to always stress that every family’s journey is different and that there was no ‘correct pathway’. By referring me back to the specialists it built trust, empowered me and reassured me that there wasn’t a clear right or wrong answer.
The parents and the deaf mentors we talked to were just as important as the medical specialists in our lives.
Importantly, speaking to another parent normalised the abnormal for me. I stopped feeling isolated and alone – I had a sense of belonging again. There was a flow on effect with my relationships with other parents – I had confidence knowing that they were in the same boat. By talking to another parent, I got the gift of empowerment and strength – which every child needs from their parents.
Then DCA organised for Jess to ring me… a 27 year old lady who had been deaf all her life but hadn’t been diagnosed until she was 4 years old. She rang me on my phone! I didn’t even realise that was possible. I cannot describe how powerful this moment was for me. Jess just chatted to me about her job that day, her partner, where she’s travelling next. She talked about school and the challenges she faces when going out to restaurants with friends… This one casual, non-remarkable conversation changed everything. By talking to Jess, I realised Jethro was going to be fine.
Finally, we had the chance to get together with other families of deaf and hard of hearing children and adults. This was so important, particularly for Aurelien who, I hadn’t realised, was having an even lonelier journey than me – probably because he wasn’t coming to the specialist appointments and speaking to anyone. That day he spoke to other fathers and Julian who is deaf and an engineer like my husband. I remember what my husband was like after – he was his calm and happy self again, and he stood taller. My oldest son Isaac played with kids who had hearing aids and cochlear implants – and thought nothing of it. It was then I realised my family would be okay.
Aurelien and I had thought we were coping just fine thank you. But there are things that you just can’t understand no matter how many pamphlets you read, sites you’ve researched or professionals you talk to. The parents and the deaf mentors we talked to were just as important as the medical specialists in our lives. They gave us confidence, made us feel part of a tribe again, and gave us motivation and independence. It energised us. We have had such a rich journey since. Every baby deserves to have empowered carers like that. Jethro deserved that.”