Have you ever just stopped, sat and listened to the noises around you?
One of the symptoms of 22q that Piper suffers from is severe hearing loss in both of her ears. Her middle ear is abnormal and deformed as well as her outer ears being small and uneven and the hole in both ears blocked (known as atresia). Thankfully, technology is amazing and she is able to wear a bone conductor hearing aid. It has a microphone as one part that takes in the sound, and a part that vibrates the sound on the bone behind her ear. This creates the sound that bypasses her middle ear enabling her to hear.
While I don’t fully know what Piper hears without the hearing aid on, it has been described to us like being at a loud concert wearing head phones. Everything is all muffled. With the hearing aid on, Piper hears at the lower end of ‘normal’ hearing range, except there is no depth to the sound she hears.
We can hold the vibrating part to our own ear, and block our ears and you can hear to a degree what it would be like for Piper. You can hear every noise, whether it is the washing machine that sounds like it is right next to you, or the echo of the cars driving on the street down the road. I can imagine it would be quite overwhelming at times, especially in noisy environments.
I can’t imagine not being able to hear sound. It is such an important part of development and of life. It can be quite frustrating for Piper at times, as she cannot speak to tell us what she wants, and she may not know the sign for something so can sometimes feel helpless. Or she sometimes has made up a sign and keeps doing it to us while we are trying to guess, but she keeps doing it over and over looking at us blankly, because we just don’t know. That’s a bit gut wrenching.
Piper has had her hearing aid since she was about 5 months old, so we haven’t known anything different. We always have so much going on with therapies and appointments that this is just a part of our life. I sometimes have these moments where I stop and I’m like wow, Piper can’t hear without that hearing aid on, and she can’t hear like us.
Communication. What is that? Talking? Before this journey, I had no idea of the complexity of this seemingly simple task. Her speech is severely delayed for many reasons: hearing loss, clef palate, small jaw, low muscle tone. However, her communication is incredible. She is amazing with Auslan sign. It’s actually a remarkable language to learn. We have been educating ourselves with lessons and teachers. The deaf culture and history is very fascinating. We are always learning new signs to keep up with Piper who picks up a new one in a day now.
It’s a silent world for many, but it’s also a beautiful one. Piper doesn’t let it get in her way, and she continues to blow us away with how she adapts.
I have learnt to appreciate small things. The way Piper’s face lights up when she hears the birds singing. The way she blows her mouth when she hears the wind. Her shocked face when there is a loud sound, as she points to her ear to tell us she can hear something. When we are in a café and she signs ‘lots people’, and amongst the constant noises a baby cries or someone sneezes and her face lights up as she hears it.
The way I watch her speak to me through sign, I’m in awe. I love sitting together with Piper in silence with the windows open, and listening to all the sounds we can hear. I love Piper signing to me what she can hear. I love her expressive face. I love watching her lip read, and really look at what my mouth is saying. I love her attempts at trying to say things, most of all I love that she can call me “Mama!” I waited a long time for it, but it melts my heart, she even tries to say “Mummeeee!”
We often live in such busyness, the chaos of life, between work, kids, housework and everything in between and we frequently miss little things happening right in front of us. Just take time out to stop and listen, to the wonderful elements and sounds that God created for us. That we are so lucky to be able to hear.
While Piper lost her hearing, we haven’t really lost anything. In fact we have gained much more. We have been exposed to a wonderful world and community of sign, and I’m always reminded to stop and just listen. The way Piper dances to music and the way she enjoys sound so much more than those around her and it’s a pure delight.
Sometimes, I stop and listen to just noises and sometimes it’s to stop and listen to God, in his presence, listen to Him and what He wants to reveal to you.
“Be still in the presence of the Lord, and wait patiently for him to act” Psalm 37:7