A look back on my journey

Henry’s journey has been fantastic.  He has gone from being profoundly deaf, locked in his own world, unable to communicate and participate fully in our life, to a very happy, outgoing and confident little boy.  He can hear the word “biscuit” whispered in the other room, and will throw a huge tantrum, demanding his “mama” or “dada” listen to his needs.  This ends in two ways, a biscuit and a “thank you” from our little boy.  Or a distraction by us with the promise of something equally good- a book, bike ride or one of his cars (all of which he will eagerly say “yes” to, nodding his head up and down and understanding completely what we are offering).  What wonderful progress he has made.

But, how has my journey tracked?  I was a reluctant participant in all of this.  You know the quote “I took the road less travelled”.  That wasn’t my choice.  I wanted the road most travelled.  I wanted a normal, healthy baby.  I didn’t want a baby who was profoundly deaf.  Sure, I am ‘technical’, I studied engineering at university.  But I didn’t want to learn about audiology.  I was quite happy to never know the difference between conductive hearing loss and  sensorineural hearing loss.   Yes, I enjoy studying, but do I have to learn Auditory Verbal Therapy? 

I have been put on a path that I wasn’t prepared for.  That I didn’t choose.  But you know what?  I am a mother, I am Henry’s mother and that means embracing every aspect of that.  I am privileged to be the mother of two gorgeous children, and I love all that comes with it.  Parts of the journey have been hard.  Holding Henry in my arms as they knocked him out to commence a seven hour surgery to implant his cochlear implants- what an enormous responsibility; as he looked up at me with his trusting eyes, me worrying if we were doing the right thing, but sure that we had made the best decision we could.  I feel so special to be part of Henry’s journey.  It has been Henry’s journey towards hearing and talking, but it has also been my journey.  I have learnt so much- the technical stuff is easy, I can learn that in a night.  But the important stuff, you have to experience it, to live through it.  I have developed a greater understanding of love, acceptance, family, empathy and resilience.  Not just through my own journey, but through other people I have been lucky enough to meet and talk to on the way.

And you know what, I feel proud of how I got through this.  And I really do feel we are ‘through it’.  Henry may not have ‘normal’ speech and language yet, but I have no doubt that he is well on the way. I have no concerns whatsoever about his language development now.  Sure there will be things to sort through in the future, but just as part of normal everyday life.

My gorgeous Henry

I am constantly reminded that every day parents are faced with the discovery that their child has hearing loss.  And it’s a traumatic and troubling time, it definitely is.  Filled with uncertainty and unknowing.  But if I can offer any comfort, it is this:  I have kept my blog for ten months now, on our journey towards getting Henry access to sound and hoping that he would one day speak.  Although the odds are good, you never know... And so I recorded our journey, the ups and downs, the exciting moments, the difficulties.  But less than one year on, I find I have little to write about.  And I am starting to feel, it’s no big deal.  And I know it is, of course.  No parent wants to see their child faced with the obstacles a hearing-impaired child will face.  And of course, there is and always will be, difficult times.  But to parents who have recently been re-routed to my path, the one where you have one calendar just filled with audiology, therapy and doctors appointments, take heart.  If it’s only hearing loss (and I do know that for so many, it is so much more), it’s one year of intensity, and then you will just get on with your lives.  On a slightly different landscape.  But it’s do-able.

For myself, I find that I have been given a new filter to life.  I can focus much more clearly on what is important and what is peripheral.  People.  Things.  Experiences.  Life.  Would I choose this path?  No, I wouldn’t choose to have a deaf child.  But you know what, I am enjoying the journey.  It’s different.  It’s not what I planned.  But it’s rewarding.  It’s special and filled with love.  And we are happy.

Baby Gym

It has been a while since I have written, and I think that reflects the fact that my life has moved away from being a mum of two children, one of whom is deaf, to just being a mum.  Who knew ‘normal’ was so wonderful!   

I was reflecting on this yesterday when I took Henry to his weekly Baby-Gym class.  When we started in the class, Henry was the only child who couldn’t walk (the class is for 18mon- 24mon, and Henry started walking only at 18months).  So activities like running around a circle were difficult, despite Henry’s super-speed crawl!  Henry had very limited vocab, so instructions from the teacher like “okay, everyone come and get two shakers from the box, one for you and one for mummy”, meant little to him, even if he had been able to hear the teacher properly above the background music and other children!  However I wasn’t too worried about what the other kids were doing, and what Henry couldn’t do, I was doing the classes to teach Henry new things and expose him to different activities, and as long as he was progressing in his own way, and having fun, then that was all that mattered.  Each week I patiently repeat each instruction from the teacher to Henry to ensure he has the language to go with each activity we are doing.  And over the weeks I have seen his confidence blossom, in himself, his understanding of what is happening and in his abilities.  Before we started the class I was worried that his CIs were going to keep falling off at inopportune times (like when he is demonstrating swinging on the bars to the class) – I didn’t want everyone to see him as the boy that needed these hearing aids that kept falling off- I just wanted Henry to be another little toddler trying to balance on the beam.  I needn’t have worried- his headbands keep his CIs on so perfectly, they have only come off once, when he was being shown how to do a backward roll and very awkwardly got stuck halfway!

Yesterday in class, just over two months after we started, he was running around with the rest of the kids, fighting over the balls and calling out ‘mama’ when he couldn’t see where I was.  At one point the teacher asked Henry if she could help him do a handstand.  He nodded and said “yes”, it was so cute.  I know he didn’t really understand what she was asking, but he understood enough that it was question and Henry had to answer and that then he was going to do something with her.

Henry is an individual, with his own strengths and weaknesses, but it is so nice to see him with other children his age and see that he is not missing out on anything, he can do everything they can do, it’s wonderful to see.