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Monday, 12 August 2013

Just a thought ...

So much of my life right now revolves around my Cochlear Implant journey, it gets completely overwhelming at times. Actually, most of the time it is.

You see, there is all the media hype about the "switch-on" when you see the little kid hearing for the first time. Or a parent hearing their child for the first time. Whatever the situation is, they are emotional. Ask anyone. Its an emotion thing to see on youtube & whereever else you see them popping up all over the place.

But imagine how that is for the person who is hearing for the first time.

Imagine the person who goes through the surgical process & gets to the switch on part only to not achieve what our ultimate goal is to achieve. Imagine when they do that "switch-on" ... there is nothing... no sound ... no acknowledgement of something.

Imagine the mother (or father!), never having heard their child / children talk & then for them to go through all this & find out that it isn't going to work for them. All the hype, the possibility of being able to hear your child talk, to laugh, to say "I love you, Mummy/Daddy", then it doesn't happen & you are left there alone in the world of continued silence ... still.

These are my fears.

I am forever greatful that I have heard the beauty of the world in my lifetime. I am thankful that I have heard the wind blow, the leaves crunching under my shoes in autumn, the birds tweeting, my parents voices, my husbands voice. The joy of talking on the telephone to my friends for hours & hours, talking on the phone to my Mum or my grandparents.

Some of these things I will never be able to do again even if I get hearing back, because time has passed. I can never hear my Dads voice again, I can never talk to my grandparents again. I accept that, just as anyone would accept it when death occurs. I understand that, that is life. Thats just the way it is.

But one thing that I want more than absolutely anything in this entire world. One thing I want to be able to experience just once! Just one little time is all I ask for in my entire life. I want to hear my daughter. I want to hear her say "I love you, Mummy".

She already knows that I am deaf. Even in her small little 3yr old world, she knows that I cannot hear her. She says "I love you, Mummy" all the time. And sadly, she is all too aware of the fact that many times when she says that & I see her saying it, I get tears in my eyes or I burst out crying. I tell her that i'm happy coz she loves me. I tell her i'm happy that she says it all the time. I cannot tell her that I am sad coz I can only see her lips moving & not HEAR her voice saying those words. She is too young for that, in my opinion. She shouldn't have to figure out what that actually means.

She knows this journey well. She is going through every day with me & goes to all my appointments. We don't have family or friends nearby to help us out, to look after her while I go to my appointments. I have lost all independence & won't go to appointments by myself. I always have to bring my husband along with me. That is my reality. I depend fully on my husband to do my talking for me & to be there to answer the questions.

If my husband is there, then you can guarantee that my daughter is there too. We travel as a unit. All 3 of us, all the time, to any appointment that I attend.

My fear of gaining back some hearing is that I will have to try & be independent again. I am scared of that world now. It has been so long since I was independent. I have conversations with myself in the bathroom of the shopping malls before heading into a certain shop if I know I have to buy something. I have to force myself to go through the checkout & not just wait for my husband to buy it, or go home & buy it online. Luckily for me, a few of the major department stores now have self service checkouts. I thrive on them. Love them! Until that red light comes up above your checkout & says "please wait for an attendant" - worst nightmare! Stupid, but thats what I deal with.

The other thing I am dealing with is the absence of my Mum who is currently on holiday for 2mths traveling around Europe. We knew earlier this year that she wasn't going to be here for me during the surgery. That was fine. We figured out though that she would probably be back by the time I had my "switch-on". Now today I have found out that its too soon after shes got back from her holiday & she won't be here for the switch on. Thats not her fault though. She has been through life with me through thick & thin. She has supported me 200% in everything that I have ever done, even the things that she isn't so sure on (like moving to Australia with a guy I hadn't known face to face for long, or changing my university course half way through the year without discussing with her first). I could easily change the date of my switch on to make it suitable for Mum to be here when it happens, but like I mention below, coming over later may be more better for both of us to have the chance to experience sound again.

I have been emailing her throughout her holiday. She's been enjoying her new ipad that she bought especially for the trip & has been enjoying connecting with WiFi in the hotels. So we have kept in touch & upto date with everything.

I emailed her with what everyone in my Cochlear Implant journey team, has been telling me. Don't expect too much. Be realistic about what will happen on the 'switch on'. So, I told her that I am OK that she doesn't come over here for my switch on. That it is probably more beneficial that she comes later, say in 5 or 6 weeks.

But it has just hit me. The one person who knows me the most in this world is my Mum. I want her with me if this turns out well. Or bad for that matter. I've been focusing on the whole thing & downplaying it all. I'm expecting the worst basically & therefore anything good that happens is a bonus for me. But sometimes a girl just wants her Mum.

So there you have it. In 2 weeks & 2days, I will have had my "Switch-on". I don't have any clue on how it is going to go. How it is going to end up. Whether it will be a huge event, or a non-event. I don't have any control over this part of it. That scares me. I like knowing what happens. I don't like surprises. Anyone who knows me will know how much I hate surprises lol.

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