Jenny's Story: My Life with Crouzon Syndrome
Growing Up with Crouzon Syndrome
Being an Adult with Crouzon Syndrome
Being a Mother with Crouzon Syndrome
Dealing with Unexpected Crouzon Syndrome
Helping Your Child to Cope with Teasing
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Jenny's Inspirational Sayings II
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University:
After having my final operation I went off to university to study to become a Primary School Teacher. I nearly did not finish my studies as I had a lisp from having my jaws put back in the correct position. I still spoke how I did before my jaws had been re-a-lined. This lisp gets worse when I am nervous and it was thought that teaching might not be the best vocation for me. But I was allowed to continue and I had speech therapy to try to re-educate my tongue but it wasn't too successful.
I enjoyed living away from home and being independent. I joined the local church and became involved with various Christian activities on and off campus. My faith helped me to deal with life.
I met my first boyfriend and future husband whilst I was at university. He attended my church and the university. It felt so wonderful to be loved and to belong to someone. My studies initially suffered because of my pre-occupation of being 'in love'. This man did not always treat me well but I looked past this as I loved being special to someone. This relationship seemed to make up for all the teasing I had endured from boys over the years.
Teaching:
I found my first year out as a teacher difficult. My shyness got the better of me many times and I was very self-conscious about how I looked. I was in an article for the Australian Women's Weekly in my first year out. It was based on the craniofacial unit and featured some of the patients and Cher who was out in Australia for a concert. I was a little embarrassed and self-conscious about it when my children brought the article along to school for 'show and tell'. I was extremely nervous telling my children what the article was about. I had never had to tell people apart from doctors or friends.
From that point on whenever I had to tell people about Crouzon Syndrome I would get sweaty palms and lose my breath. I found it extremely difficult to talk about.
I worked on my teaching skills and became a quiet achiever. I did further study and achieved a Bachelors Degree and a Masters Degree with Honours. I received awards in both of these.
Now that I am comfortable about who I am and what I am, I use being a teacher to educate my students about facial differences and the need to look past the outside appearance of a person. Society places such a large emphasis on outer beauty that it is difficult to have any real impact, but I hope that I have helped in a small way. I also am a big advocate for anti-bullying as I know what harm it can do to a child.
Marriage:
I married my first boyfriend. The marriage lasted for 10 years. Before we were married there were many signs which stand out like beacons that would have shown me that I was a fool to marry the man, but I ignored them. I wanted to be married. I wanted to be loved and I guess in whatever form it came. In doing so, I let myself be controlled and emotionally abused. I attribute this to Crouzons. As a teenager and then as a young adult, I yearned to be loved and accepted by a man. I felt that I needed someone who would not see me as just a face, but who would love me for who I was inside. I knew going into the marriage that I had a 50/50 chance of passing on the syndrome and he did not want to take the chance. This added another barb into the festering wound. Over the length of the marriage I had limited contact with my family and friends. I lost my freedom and independence and became even more shy, more lacking in self-confidence and developed a very low self-esteem.
On anti-depressants and suicidal, I finally found the courage to leave. I divorced the man, did a lot of soul searching, picked myself up and moved on.
Soon after separating from my first husband I met Joe on-line. I loved the anonymity of the internet and I liked that I could be myself without anyone seeing me. Joe and I enjoyed talking to each other and had the same values. We decided to meet and Joe came out from the US to meet me. Before he came out I made sure that he knew about my Crouzons and sent him so many photos, taken from every perspective. He couldn't see anything wrong with me which made me feel wonderful.
I was very nervous meeting him and he was too. Once we got past our nervousness and the culture differences everything was wonderful. We were married 10 months later. See our beautiful wedding photos.
Before our wedding I explained to Joe about the 50/50 chance of passing on the syndrome incase he could not cope with it and because I knew that he wanted to have children. Joe said that he didn't mind because I turned out great and he loved me. My darling husband is my blessing.
My Reflection:
When I was a baby I had to have my skull expanded to enable me to live. The other two operations could be considered cosmetic. They were done to help me fit into our vain society.
Growing up I took my operations for granted. They were something that I had to go through to stop the teasing and the hurt.
Now I am on the other side of the coin. I am watching my children go through the first stages of their series of operations. So far all the operations my children have had are for health reasons. This has made it easier as there was nothing to debate, they had to have these operations. The other operations that are in the pipeline are also for health reasons. When the children reach 17 or so they are able to have their final operation which is done when the face stops growing. This is normally done for cosmetic reasons, so that one will be up to Melissa and Nick to decide when they get there. I went willingly to the surgeon's table at the age of 18. I so desperately wanted to be like everyone else and not be different. I endured the pain but came out the other end feeling elated and as if a demon had been lifted from my shoulders. I will be there for my children for whatever decision they make. I will also stand by them when they come to have children. Who knows what advances will be made in that time with IVF and other technologies. Currently IVF can be used to select embryos that do not have the syndrome, but then my problem with that is, what do you do with the ones that do have Crouzons? I could not destroy them. I have achieved a lot in my life and why should I deny them the same opportunity?
I do still carry emotional baggage with me from when I was younger. I still have shyness. I still get nervous when I meet new people for the first time. I still see myself as the Crouzon kid. I have big eyes still but I feel like they are many times bigger then they actually are. My husband always tells me, and so do other people, that you wouldn't know that I have a facial syndrome. I always have to remind myself of this when I am feeling shy.
I have a tracheotomy scar on my neck. It is thick and very noticeable. I spent a lot of time in high school trying to hide it. Most of the time it does not bother me but sometimes I am very self-conscious of it. It is part of who I am, and part of the experiences that I have been through. The children at school always ask me what it is from and I then use it as an opportunity to explain to them about facial syndromes.
As I have become more comfortable with my outer-skin I have become more determined to be an advocate for people with facial differences because your face is your identity. It's how you are recognised. It is what people form first impressions on. So being born with a facial condition or having something happen to your face can be devastating. Society does put such an emphasis on having a pretty face and the perfect figure and those people who do not fit into these images have a hard time often achieving their goals and being accepted for who they are. It is a sad reflection on the values that our society has. For don't we teach children 'it's what is on the inside that matters', but that is not the reality.