I’m scared. On the outside I look strong, confident and capable as life continues as normal but inside I second guess and fret. I’m admitting this very privately to my computer but now I’m sharing it very publicly. It’s not something I have shared openly with the people I see every day, but I think they know anyway.
In just over a week, I will take my son down to have some anaesthetic, watch him fall asleep and hand over his care to the surgeon whom I am placing all my trust in. Then I will walk away and try and swallow the lump which will form in my throat as I try not to cry in front of Cameron and show him my fear.
Cameron will be having his cochlear implant re-implanted during that surgery. He was first implanted when he was four and a half years old. He had been diagnosed at eighteen months old with a severe to profound hearing loss, which fluctuated and got progressively worse (typical of the syndrome which caused his deafness: Pendred syndrome).
Whilst it took Cameron a bit of time and lots of effort to learn to use the new type of sound the implant provided, it has been highly successful for him. His use and understanding of language developed well, though he has never left behind the sign language he had used initially. His school reports comment on his ability to switch between his use of sign with some of his peers before going back to using speech with hearing peers.
Then at Easter-time this year, his implant had to be removed following an infection -a risk which had been outlined on the consent form I signed so many years ago. For weeks the doctors had tried to avoid this outcome, using different combinations of antibiotics to fight the source of the pain in his head. Unfortunately, the seemingly inevitable happened, and he was explanted.
The weeks it took to resolve the problem exposed us to doctors who had never seen a cochlear implant and questioned whether they could see it in his ear canal, other doctors who were convinced it was his jaw causing the problem, the list goes on and on. Through it all there were periods of time where all I could do was hold Cameron to comfort him as he lay in extreme pain while we hoped the painkillers would take effect.
Through this experience it has been so apparent the strides Cameron, who is now eleven, has made towards maturity and self-awareness. In discussing his feelings around having his implant removed, his subsequent frustration at needing more support in school from an adult and the prospect of another operation for re-implantation he has expressed himself clearly.
Cameron has told my husband and I that he has no wish to be ‘like us’ (hearing), he is happy being himself. Through the difficult parts of his hospital stays he at times removed his hearing aid as well – relishing the silence he has within his world, something he has always done since being a young child. Opting when tired or feeling unwell to rest and have peace without auditory input, relying on sign language to communicate with us. Ultimately though, he wants his implant put back in. His own sense of ‘normality’ includes the access to sound which the implant provides for him and there is no question for him that it is the path he wants to follow.
As a mum I have watched my son writhe in the pain he was experiencing as a result of the infection, and nursed him through his recuperation, often being absent for my other children to do so. I have fought to get him a higher level of support in school even though he resents the need for it. It’s been a long few months and I now face watching my son go in for further head surgery.
I’m scared, scared of the risks and the consequences. Again it has been a massive decision to make. But he wants this surgery, so I have again signed the consent form which lists the potential risks which we now know are very real. Only this time his adolescent signature has joined mine on the form, expressing his desire for the operation to go ahead. This time he has more awareness of the choice being made and has made it clear what he would like to happen.
So in a matter of days I will be there by his side, the fear hidden deep inside as I wait with him to take the first step back towards getting his hearing back.
Tamsin Coates trained and worked as a Speech and Language Therapist for over 10 years. Her training came in useful when she had two sons who are profoundly deaf. She now juggles being a mum to three lively children, writing, running the Wirral Deaf Children’s Society (with her friend Lisa) and raising awareness regarding deaf issues wherever she can.
The Limping Chicken is supported by Deaf media company Remark!, provider of sign language services Deaf Umbrella, training and consultancy Deafworks, the National Deaf Children’s Society’s Look, Smile Chat campaign, and the National Theatre’s captioned plays.
Pauline Roberts
July 9, 2012
What a wonderful job you have done Tamsin! For Cameron to be so comfortable in himself and to know what he wants at such a young age is a credit to you. I can fully understand your fears as a mother, but you are so obviously putting Cameron first in what he wants. Do keep us updated.
Liz warren
July 9, 2012
keep the faith remember you’re in it together you will both pull through whatever the outcome
mark donnelly
July 9, 2012
I have a beautiful 3 year old daughter called Cerys. She has a severe hearing loss of 80 db but with hearing aids still not getting those high frequency. She has been accepted for bi lateral implants and we are awaiting a date for surgery. I was so strong in my decision but as i wait for her op i have been filled with doubt. Everyday i see progression in her use of language and i dread her entering silence for the six weeks after surgery and i feel so bad that this decision has to be made. thanks for sharing your story
thebionicboyandbrothers
July 9, 2012
Thanks so much for sharing this. I too am a trained speech and language therapist with a profoundly deaf, cochlear implanted son. When he chose to have his sequential bilateral implant done earlier this year I went through many of the same emotions. Hope it all goes well for you both.
lisa heenan
July 9, 2012
Lovely article from my wonderful friend. A tower of strength and wisdom to her family and friends alike. Now it is her turn to let us be the towers. <3 you Tam x
Georgina Robinson
July 9, 2012
What a touching and heartfelt piece. You must be very proud of Cameron. I think it’s lovely that he is supported in making his own choices but also that he’s mature enough to do so at such a young age.
Larry
July 9, 2012
You have an incredibly smart kid! Any kid who realizes that hearing people sometimes climb great mountains to reach “solitude” and silence, and he can just take off his CI and hearing aid to reach the same silence. He’s a smart kid!
Lucky Larry
red
July 10, 2012
I am thinking of you as going through the op with your child once was hard enough, and you having to do it again, gosh. From my experience, working with deaf children and as a deaf adult I am SO glad that you and your son can sign so it wouldn’t be as scaring not being able to communicate at all while recovering from the op. good luck x
Beefo
July 10, 2012
We’ll be thinking of you over the next 2 weeks – the same happened to our eldest when he was 8. It was a very hard time for him and for us, and it took him about 6 months to get back to where he was before the implant failure. In the long run though, it definitely made us closer as a family – we were able to talk through together what to do for the best. He chose to be re-implanted, and the fact he was able to choose one way or another was really important to us. It also made him realise how important his signing was.
Karen Putz (@DeafMom)
July 10, 2012
Wishing Cameron a speedy recovery and a smooth process with the new implant. The parenting journey certainly has its twists and turns throughout the years!
jacky
July 20, 2012
Hope Camerons operation goes well for him x he is a very brave boy and you are a fab mum xxx
Tamsin
July 21, 2012
Thank you everyone for your comments. Cameron has now had his operation, which has been successful so far. I’m very lucky to have such a mature young man who was positive throughout the whole process, apart from one little wobble whilst coming round from anaesthetic….and that’s what mums are there for-to provide the cuddles and reassurance when it’s needed! We are awaiting his switch on in a few weeks and I’ll keep everyone updated on how that goes! xx