Thursday, 13 July 2017

Blog 92 - Is Your Life All About Your Facial Disfigurement?

I read this post on my Facebook page and it resonated with me.

To my friends with Apert Syndrome. Its just an observation made with love, care & thought. I noticed that some of you are burrowing deeper into that singular identity. You are more than someone with Apert Syndrome. You are a human & there IS more to you than AS & you don't have to focus on that every time. You are a beautiful child of God that can get through the seas of human life. It's ok to make mistakes, it's ok to have some negative little things in life, heck, I don't think people realize that when they hate Mormons or immigrants, that means they hate me & that's ok. I don't expect everyone to love me or agree with me on a lot of things, that's part of life for everyone. Go ahead & critique me for being Mormon or an immigrant, it's apparently a thing. Apert Syndrome doesn't have to be the conversation topic every time & I can attest that it doesn't have to be a life crisis either. Honestly, Apert Syndrome is one of the best things that happened to me. It's not a disease, it's not a curse & it's definitely not an excuse to not explore every beautiful aspect of life. We all have setbacks, we all have baggage, we all have haters, we all have taxes, we all have bad days some days, we all have sad days & heartbreaks. We're human. And please, please learn about African American History & the plights, stories & sacrifices of other cultures. I'm surprised at the fact that some people with Apert Syndrome have yet to learn that they're not the only ones suffering from discrimination, stares & other unfairness or weird public moments. It's not always all about you, or me. We're all important. I'm happy, I'm okay, I just want to raise awareness that there is diversity even within the craniofacial community in the US. 

I like that the person writing this post realises that her craniofacial syndrome does not define her. It is just a part of her. She experiences the same ups and downs in life that many people experience who do not have something wrong with their face. There is discrimination in all quarters. I see it every day on the news. It is the same with my daughter who has Down syndroem. Down syndrome is just a part of her - it does not define her. 

Advocate and spread awareness but do not be bitter about the hand that has been dealt to you.

I think a positive attitude about having a facial difference goes a long way to having a happy and successful life. People who know you, will not care about how your face looks. And those that make comments mean nothing in the scheme of life. Yes the comments hurt, but you need to try and shake them off and keep on going.Yes it's annoying that you have to spend time at the hospital and undergo painful surgeries, but there are many people with other genetic conditions who also have surgeries and spend a lot of time at the hospital - I see them every time we're sitting in a clinic.

My advice is, get out there and live your life. You only have one, so enjoy it and leave your positive mark on the world!


Tuesday, 11 July 2017

Blog 91 - Anniversary of Book Launch of Ride High Pineapple

A year ago I held my book launch of Ride High Pineapple. The story had been in my heart for a long time but it wasn't until I left teaching that I was able to put pen to paper and write the book. I wrote a few different versions of the story, finally being happy with the final draft that was published. I am rereading Ride High Pineapple now which is great because I'm viewing it with fresh eyes.

The story does show what it's like to be born with a facial disfigurement, but it also looks at many typical teenage issues, how mental illness affects a person physically and mentally, how important a mentor can be; and of course I love the analogy of the pineapple that Issy the main character uses to deal with her lack of self-confidence.

What I think is great about this book is, that anyone who feels different will get something from it. Anyone who suffers from anxiety will understand how Issy feels. The book isn't just about her face. Though Issy's face leads the story because it influences Issy's whole personality, her self-confidence, her possessiveness of her best friend and why she is bullied.

So why did I write the book?

Because I was born with a facial disfigurement, called Crouzon syndrome. Most people who meet me do not know this, because of the surgeries I've had. They do not know that the bones in my face have been rearranged and I have pieces of my ribs and hip bones in my face. For example, my brows are made from hip bone. Under my eyesockets are pieces of ribs.

Growing up was tough but I was a happy child and had friends. I tried to live a normal life but it was difficult because other kids and adults told me that I different. I was bullied, I was stared at, I was shunned. The surgeries I underwent were horrific. But I was a determined soul and that kept me going. I did suffer from anxiety and shyness in new situations.

There were no books around about someone who was different like me. I Can Jump Puddles is the only one I remember where a child was disabled. When my children were born there were still no stories around. It wasn't until Wonder by RJ Palacio came out in 2012 that finally there was a book. I didn't want to write a book the same, so went with a teenage girl and broadened the book so it wasn't just focussed on the face.

If you haven't read Ride High Pineapple, it is available as a paperback and an ebook, from my website, Amazon, Barnes & Noble, Acebooks, Kobo, Book Depository, Fishpond, Booktopia.


Wednesday, 5 July 2017

Blog 90 - Teaching Jessica Front and Back

What did I teach Jessica today? What is the front of a store and what is the back of a store. I told her Nick was at the back of the store in EB Games which is a little shop. Jess was in the middle. She turned and walked to the front, out the door, then proceeded to walk down the mall calling out, 'Nick where are you?' I had to run after her and take her back to the store, showing her where Nick was, explaining to her where the back of the store was. Just another thing kids normally pick up but I've had to teach it to Jess. Oh and this was after she picked up a Just Dance game for a XBox One and wanted to buy it. I had to keep telling her we didn't have an XBox One. I physically had to take it from her and put it back. She wasn't happy with me. It's times like these it hits me that she is intellectually disabled.

Friday, 30 June 2017

Blog 89 - Down Syndrome Blog on The Mighty

Today I read a blog post on The Mighty website. The author, 21 reasons why it's okay to have a child with Down syndrome. The blog post emphasised the positives.

Here are the first four facts:

1. You may be feeling shocked, scared and alone. It’s OK, so did we. It will pass. What you may be feeling now is transient. Your life has changed for the better, you just don’t know it yet.
2. Your baby may be more like you than different.
3. There is no “one size fits all” with Down syndrome. Your baby will be unique, beautiful and very much their own person, just like you.
4. Your doctor may present a negative view about Down syndrome and paint a bleak picture. I promise you that life with a child with Down syndrome is not bleak. Far from it. It’s bright. Very, very bright.

My daughter, Jessica was diagnosed at four weeks, due to a variety of reasons. When we received the label, I totally freaked out. The only things I had been told about Down syndrome, were all negative. I thought my world had collapsed. I thought having a child with Down syndrome was going to be excruciatingly difficult and a burden. Post-natal depression immediately consumed me.

But you know what? We're now ten years down the track, and I must say it hasn't always been easy, but it's been an awesome ride. My daughter has talents and spunk. She is loving and kind. She is reading and writing, doing math and participating in regular school. Jessica is in the school choir and will be in the school musical at the end of the year. She's achieving in some subjects at and above her age group.

Having a child with Down syndrome has definitely not been a negative experience. In fact, it's been  pretty good actually.

When my daughter's out and about, I miss her. I just couldn't imagine my life without her being in it. There are no regrets or 'I wish' concerning her. The only 'I wish' I have extends back to the lack of positivity about the syndrome. I wish that there had been encouraging information and blogs back in 2007. I wish the obstetrician had said, 'Congratulations', not 'I'm sorry'. Everything I read after Jessica's diagnosis was negative, negative, negative. What the doctors told me was negative, negative, negative. Blogs like this one, shine a light into the dark world of prejudice towards people who have an intellectual disability.

Please read.

Friday, 26 May 2017

Blog 88 - Face Equality Day

Facc Equality Day - the UK

The 26th of May is Face Equality Day in the UK. It is a day to raise awareness of what people with a facial difference or disfigurement have to deal with on a daily basis. I was fortunate that after my last surgery at 18, I didn't endure too many stares or teasing. I only really endured 18 years of daily stares, pointing, and comments. Some people endure a lifetime. Tulsi's story highlights this. The lady who is filmed has a facial disfigurement and the film shows what happens to her each day as she moves around her community. This is what I experienced as a child and teenager. I am thankful that I do not experience it now, but I am fully aware that there are many people in the world, like Tulsi, who will never escape it. 
On this day, please take a minute to think about how you react to other people's differences. Are you choosing to be kind? 


Sunday, 21 May 2017

Blog 87 - In this house...

For all my friends who have children with medical needs. I understand because this is my life too.