The heart of a giant

To maybe hear or to never hear again?

That was the question. This time last year Jasmine underwent surgery to have her cochlear implants inserted. Our surgery team were truly amazing.

I’d been through hell the previous 12 months. Nothing like what we are going through now with Daya but it was a pretty bad time. A lot of things to deal with, come to terms with, grieve, rationalise and fight for.

Our Teacher of the Deaf (more explanation on her role some other time) proved to be a stable, quiet force of guidance and support.

Jasmine had her cochlear implant operation just over a year ago. Even then, as I stood looking out over the city, having left the other two kids at home with Daddy….I wasn’t sure if I was doing the right thing for her.

That’s the truth. She’s deaf. She belongs to the ‘Deaf’ community. A chap called Russel gave me an introduction into the ‘Deaf -with a capital D – community’.

Nothing is going to change the deaf aspect….or so I thought. You see, I wear glasses to see. I wouldn’t dream of not wearing them to drive a car. She wears CIs to hear. It’s all corrective to become standardised or adaptive to your environment. That’s what I told myself. That’s why I said yes and because saying no may rob her of something that she may not otherwise get, but want, later on in life. What we were doing with respect to the operation was irreversible. And the best time to do it was during her ‘speech window’ which is open at its best from 0-3 years.

It was a long, detailed assessment and I had to push hard to get it referred and started. Looking back, I can’t believe how much energy I had to give to it. Once I pushed it, the team we went to were wonderful.

Today, a year later she’s raiding the kitchen cupboard and saying ‘Bikit’. I noticed a significant difference when I came back from NY. I had left her in safe, loving and capable hands. She’s morphed into a little version of my Mum and her Nanny. But I noticed a good difference.

I recall looking out over the city and thinking these things often make us all feel so small and insignificant. These big views. For the first time ever, I felt as though I had the heart of a giant. It was swollen with love after this little bear’s surgery. She was so brave and so much fun. Post surgery she was sitting up playing with a light-up wand. She had no idea why she was there, how long it would take, why she would be in pain and what would happen next. But, I did.

I remember saying over and over again, ‘am I doing the right thing, is this what we want to do, how do we know if we don’t have enough experience…because we are potentially given her access to one of the five vital senses we are born with, she does need it, it will open up her world or it might not work at all’. I was sad to lose the old Jasmine.

Immediately post op in recovery. Looking back on it she hardly complained. She was very small. Daddy was at home with Daya and Anaya. Daya was post chemo awaiting stem cell harvesting.

“Can we pretend that aeroplanes, in the night sky, are like shooting stars….I could really use a wish right now, wish right now’.

I wished that she would have the gift of hearing. That she would learn to talk and engage with us all. I wished Daya’s Cancer would go away quickly and that it would all be behind us. I remembered Agnes’ wishes too.

After their time in Nicu, we made a wonderful friend. Chrys. Her baby was born at 27 weeks. He’s beautiful. I’m a NICU veteran and I could see she was going through the same forest I had been through. I was scared to reach out and also drained. It’s a raw situation when it’s your first child. Anything can make it harder. I didn’t know any details and I just wanted to be in and out of there safely.

Our babies shared a room. She watched us, from afar, dealing with a lot. It also turns out that her parents are both Deaf. In fact, so are other members of her family. At the time we didn’t know Jasmine had a hearing loss. She taught me some signs and she made it all the more familiar to me. I ran questions by her, I learnt some signs and I was accepted for being part of the Deaf community whilst not really having a clue. Her Mum makes me smile. She appreciates my basic signing. She accepts me and encourages me.

I remember Anu being annoyed with a staff member one day. It turns out that Chrys’s Dad had been buzzing on the door trying to get in. He couldn’t hear them on the intercom, so he couldn’t respond. So this happened twice more as Anu was walking up to the door. They would have seen her Dad on the camera but no one went to the door to check. They would also have heard from his voice that a repeated effort to communicate was being made but no one came to the door. Anu buzzed him in. He has always stood up for people that need support, I understood his disappointment. Weeks later we found out Jasmine was deaf.

I went from never having truly communicated with a deaf person to having a whole new (deaf) family supporting us.

Two days after Jasmine’s operation Daya was admitted into GOSH for her stem cell harvesting. That was a bad week.