My Microtia Journey

My Microtia Journey

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New Secret Project

October 20, 2012

So I’m about to start a new secret project and I’d love contributions from people who read my blog!

At the moment I’m looking for people to share their stories:

– Parents

– Children with Microtia

– Teens with Microtia

– Adults with Microtia

Looking for people to submit stories, letters, anecdotes, advice… Whatever they feel comfortable sharing.

If you’re interested, then please submit your writings to: RobynsNewEar@googlemail.com

And follow this layout form:

Name:

Age:

Location:

Do you or your child have Microita:

What are you submitting (e.g. story/letter/anecdote etc):

Your piece of writing:

Best way to contact you (e.g. facebook/email):

Once I’ve got enough submissions I’ll go into more detail about what I’m doing.

Thank you all in advance!

8,000

May 10, 2012

I made it to 8,000 Views today!

I just want to say a big thank you to everyone who has visited my blog! I never thought I’d ever get this many views!

I hope that everyone who visits this blog finds it useful in some way, and know that if you ever need help or advice, I’m always happy to help out.

Thank you all so much!

My First Pair of Glasses!

May 9, 2012

So, technically it’s not my first pair. I’ve needed glasses since primary school, but I’ve always hates wearing them. Glasses would never sit straight on my head because of my ear, and because of the previous failed operations, the thinner skin at the top of my ear wold always get sore after very short periods of times. So I stopped wearing my glasses.

Recently I’ve started noticing my sight getting worse, so I decided to pay a trip to the opticians. Only to discover that since my surgery, I can now wear glasses! No longer do they sit crooked or hurt my ear! Success!

One of the reasons I had the surgery was to be able to wear my glasses, and it’s nice to know that even after the first stage operation, I can wear them normally with no discomfort. It’s the first time I’ve ever experienced this.

I’m yet to buy my first pair of sunglasses, but I look forward to making that purchase in the near future. No more squinting for me! I think people take things like that for granted. Being able to buy and wear sunglasses comfortably and “fashionably” not having to worry about them being unnaturally wonky.

I took these pictures a while back (I no longer have shaved hair) to show how the glasses sit.

None Microtia Ear:

Microtia Ear (my little elf ear):

It Does Not Matter…

March 11, 2012

What “grade” your Microtia is.

Recently I’ve felt shunned by some of the support groups I am part of, because my Microtia is a lower grade then theirs or their children’s. I’ve even seen it stated that “Grade 3 is what we all class as real Microtia”. I’m sure it isn’t directed at me (or anyone else for that matter), but it does hurt my feelings… I mean, does that mean I don’t have “real” Microtia?

I know a lot of people don’t realise that what they say causes offence, because a lot of people do share the same view, but it does need to be noted that any diagnoses of Microtia, whether it be Grade I or Grade IV should be treated with the same level of support and respect. The same with any other condition.

I just want to say to people, that it isn’t a competition! People deal with things in different ways, some people may be more self-concious than others, some people may be more upset by bullying than others etc. It doesn’t matter, everyone should be treated equally.

So what, more of your ear is missing… Or you are more hard of hearing… Does that mean that I am less important? Or anyone else with lower grade Microtia for that matter? Does that somehow devalue my experiences and advice? This is often how it makes people feel.

Because of this, I have felt less confident about talking about things with people in the groups, because I worry that they are judging me because my Microtia isn’t as bad as others. It makes me not want to participate because I feel like people aren’t interest in my views/advice because I don’t have it as bad as other people.

One thing I do want to state though is:

If a DOCTOR says you have Microtia, then you have it, it’s not for OTHER PEOPLE to decide if you are “worthy” of having it. It’s a deformity for heaven sake, it’s not like people WANT to have it!

I’ve seen people commenting on pictures saying “that doesn’t look like Microtia”, and though they may think it is being supportive/reassuring to the person. It can come across as very offensive. If someone has been given a diagnosis by a medical professional, then you shouldn’t question it. They may not fit your ideals, or even the typical medical example, but that doesn’t mean that what the Doctor said is any less valid.

It’s silly comparing people. Because there will ALWAYS be someone worse off. Your child only has one ear? Well that child doesn’t have any.  As I said before it isn’t a competition. You shouldn’t belittle someone’s problems because  you or your child has it worse… How would you like it if someone did that to you? You aren’t in that persons head, so you have no idea how it is affecting them, some people are stronger than others, regardless of any conditions they may have.

So,  I’m here for all those people who have been made to feel like they are less important because their Microtia isn’t as bad as other peoples. Feel free to message me or comment, share you stories with me!

Because I know that even the smallest imperfection can cause insecurity, and I know that even if other people can’t see the “problem” it doesn’t mean it isn’t affecting the person.

Sound and Fury

January 10, 2012 1 Comment

Sound and Fury is documentary from America. It follows the story of two brothers, one who is deaf (and so are his wife and children) and one who isn’t (but who has a hearing wife from a deaf family and a deaf son) and their decisions about whether their children should get Cochlear Implants or not.

The Cochlear Implant is given to deaf children (it can be given to adults but is far less effective) to give them the ability to hear and to learn to talk etc.

I found this documentary very interesting. As it focused heavily on deaf culture and how most deaf parents are against their children getting the implants because they believe it will mean the children will loose their deaf culture. Some deaf parents do decide on it, but often it is less successful as the child will struggle to learn to talk correctly if neither of their parents speak.

The “hearing” family with the deaf child were set on giving him the opportunity to hear, saying that they wanted the best for him. They made a very valid argument but their deaf relatives were totally against it because they thought it was wrong. They said that they were doing it because they were ashamed of the child, not because they wanted him to have a better life. Many got offended because they thought the parents believed that being deaf is a bad thing, they could understand why they wanted to give their child the ability to hear.

The reverse happened with the deaf family, they didn’t want their daughter to have the implant because they thought it was wrong, because if she was born deaf she should be proud of it. Their family who could hear, disagreed believing that they were making her life harder by not letting her have the implant. That it would affect her reading ability and education if she couldn’t attend a normal school rather than a school for the deaf.

It was interesting to see how deaf people are about their “disability”, a lot of them don’t see it as that, they just see it as a different “culture”. They think the implant is a bad thing because it will destroy the language and culture. Many made points that they were successful and that their deafness never stopped them doing what they wanted. They believe that being deaf is something to be proud of (and in many ways it should be, it shows how people can overcome adversity etc) and that it shouldn’t be correct.

I would really recommend this to any parents of children with Microtia/Hearing Loss, it’s really interesting to see this from both points of view and could be applied to BAHA as well. It’s a really useful documentary packed with lots of information and real life examples.

2011 in review

January 1, 2012

The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.

Here’s an excerpt:

A New York City subway train holds 1,200 people. This blog was viewed about 4,900 times in 2011. If it were a NYC subway train, it would take about 4 trips to carry that many people.

Click here to see the complete report.

Microtia, Relationships, Dating… The Works!

December 17, 2011 6 Comments

I was just looking through the search terms of how people found my blog, and two really stuck out and made me pretty sad actually…

“Microtia I will never get a boyfriend”

and

“Would a girl understand about my Microtia?!

It made me sad because I think it’s awful that there are people out there that feel they can’t have a relationship, or won’t be able to find someone who loves them just because of a birth defect, and I want to prove that when you find that special someone, they won’t care in the slightest about your little ear.

I have been with my boyfriend 3 years and 3 months. We live together, and have done for over 2 years. He came with me when I decided to have my reconstruction, stayed with me in London and supported me through all the ups and downs.

He doesn’t care about my little ear, he understands about all my little problems that come alone with it, he understands about my insecurities, about the bullying, and he is there for me 100%.

He’s supported me when I started my blog, and takes an interest in the community that I am involved in, in regards to Microtia.

When you find that special someone, they won’t be bothered by your ear. Yes you may have to sift through some undesirables who might upset you, but surely that is the same for anyone? If they are bothered by your ear, they aren’t worth the time of day.

The best advice is, don’t draw attention to it. If they ask you, then be open with them and see what their reaction is (I think more often than not you will be happily surprised). And if they don’t ask… Either they didn’t notice, or they really aren’t bothered by it, and like you for you, little ear and all.

Just because one boyfriend/girlfriend might of been negative, doesn’t mean they all will be. I know it’s easier said than done, but don’t let the idiots get you down.

I know a lot of other people with Microtia who are in relationships, or even married with kids. So please don’t lose hope! It really is just a case 0f finding your Prince among the Frogs.

As I’ve mentioned before, I’m always willing to chat or give advice to people if they need it. So feel free to leave me a comment, send me an email or whatever. You don’t have to feel alone!

This is me and my boyfriend after my surgery:

 

This is us at our graduation:

 

 

 

Interview: Mark

December 16, 2011

Recently, I decided to interview a friend with Microtia, who unlike me has decided against the surgery. I wanted to put this on my blog to show that surgery isn’t the only option. A lot of people live happy and normal lives without ever having the surgery done. In fact, surgery isn’t even necessary, and I want people to feel like it’s ok not to have the operation. I have seen recently through groups and such that a lot of parents feel that their children need to have the surgery because of what society dictates, that if they don’t have it their kids will be bullied/treated differently etc. This isn’t true! Even perfectly healthy children can be bullied and not everyone with Microtia is picked on or victimized.

Let your children decide for themselves if they want surgery or not. You never know, they may be very proud of their little ear!

Anyway, on to the interview!

1 – When were you born?

Born November 12th 1968
2 – When did you first find out you had microtia?

Approx. 2 years ago.
3 – Before you knew you had microtia, where you ever given a different diagnosis/explination for your ear?

From what my parents have told me, they were just told it was a birth defect.
4 – Were you ever offered surgery options, if so at what age/s, and what were the options?

When I was very little I think about 3 or 4 the hospital discussed options of Plastic type ears or maybe skin grafts, luckly for me they declined.
5 – Why did you decide against surgery?

Well I didn’t (see above) as I grew up I came to terms with my ear and to be honest have never really considered it.

6 – Was there ever a situation that could have changed your mind in regard to surgery, if so what was it?

I would have consider ear canal surgery if it could have given me back my hearing.

7 – Were you ever bullied/did you ever receive hurtful comments about your ear?

Yes, although when I was younger it was name calling etc. and never really considered as bullying like it would be today.

8 –  Now you are older, do you find people’s attitudes have changed from school times?

Very much so, although it wasn’t until into my mid/late 20’s that I plucked up the courage to go ‘public’ and have my hair cut short and exposed my ear.

9 – Finally, any advice you would like to share in regards to Microtia or surgery?

Yes, Don’t get to hooked up over the reconstruction aspect – allow the children to develop and make there own choice when there older enough to understand there condition. In my opinion the loss of hearing and the effect it can have on early learning and social development even if only unilateral is far more important.

I’d like to say a massive thank you to Mark for doing this for me!

Timing

November 24, 2011

So I haven’t updated recently and I do feel awful for that. I still check the blog whenever I get a comment and will usually reply within a day or two. So if you want to contact me, don’t be put off that there aren’t any recent posts, I’m still lurking around.

Anyway, this is an important blog.

After a lot of thought and consideration, I have decided (at least for the moment) not to have the second stage of the reconstruction on my ear.

This is not because I don’t want to, but at the moment it is not financially viable. Travelling to and staying in London (even in Youth Hostels) is not cheap. Yes I could save up the money to pay for this. But the time both I and my boyfriend would have to take off work, means that we may not be able to pay bills and rent, if I did go for the surgery. And if I did go for it, the money saved up would be used to pay for bills/rent, so it sort of negates it really.

I’d also considered sick/holiday pay but I’m not guaranteed holiday pay, and sick pay is a lot less than I would earn working.

I hope that in the near future it might be an option, but right now I have to focus on things that take priority.

I am looking into other options, such as transferring to a closer hospital, or other surgery options which could provide a similar outcome (I’ll go into this in a separate blog post).

Of course I’m disappointed, I’d hoped that this would all be smooth running (for the most part at least). But instead of letting it get me down, I’m just going to see it as another thing that will shape me as a person.

To All The Younger People…

August 20, 2011 5 Comments

Who read my blog.

Don’t ever let people make you feel that just because you have Microtia. that you’re not as capable as everyone else.  Yes you may have hearing problems, and struggle in class, maybe you’re teachers aren’t the most understanding, or your classmates bully you because you have to sit in a certain position so you can hear what’s being said.

I know what it’s like, and I want to share this picture with you:

 

 

This is me, at my Graduation a few weeks ago. During my final year of University I underwent the first part pf my Rib Graft surgery to fix my ear, and I’ll be honest my last year was a struggle because of this, both physically and mentally, but I succeeded, and I know all of you can too!

I made it through school, I survived all the bullying, all the people who didn’t understand, all the problems you are probably facing now, and if I can do it, you all can too!

I know sometimes it can be difficult, and you might feel like giving up because no one else understands, but I’m here to prove to you that it is possible and it does get better! Never see your Microtia as a burden, see it as little badge of courage, see it as a reminder of how you can overcome difficulties that you face, a reminder of how strong you are as a person. Don’t be ashamed of it.

Stay strong, and believe in yourself!

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