Blog 13 - Ultrasounds and a Baby Girl

Because of my 50/50 chance of passing on Crouzon syndrome I had many ultrasounds.

To begin with it was thought that my baby girl may have had Down syndrome because she had thickening of the base of her neck (nuchal translucency). But this was later ruled out.

As time progressed and as the baby's head got bigger, it was thought that there was a strong chance that the baby would have the syndrome. The technician thought he could see some fused skull sutures and she had wide set eyes. But he was not 100% sure.

We went into the birth expecting Crouzons but had to wait until our baby was born to know for sure.

Because Crouzons was suspected I was booked in to have a cesarean.

In April my beautiful baby girl was born. My husband asked the paediatrician if she had Crouzons and the paediatrician's reply was 'she is just like her mother'.

I did not cope well with this news, but put on a brave face. I felt very guilty that I had passed on the syndrome. But Melissa was my beautiful baby girl and I loved her dearly. No way did I know what lay ahead for my precious little baby.

© 2012 by Jenny Woolsey

No part of this blog may be reproduced without prior permission.

Blog 12 - Miscarriage, Visa Problems, Pregnancy

Happy in love we went off on our honeymoon to the beach. No fight this time.

A few days into the honeymoon I started to bleed. Ringing the obstetrician he told us to come home and I went to have an ultrasound. I was 11 weeks.

We were very nervous not understanding what all this meant.

We waited with anticipation whilst the technician put the gel on my stomach and then the ultrasound. There was a long silence.

The technician abruptly said 'there's no baby there'. There was just the sac.

She left us and we sobbed in shock. No baby!

We went and ate and cried. I then had to go and see my obstetrician. He said I had a 'blighted ovum' where the baby had stopped growing at 6 weeks and been re-absorbed by the body. Because the sac remained the body thought it was still pregnant which is why I felt pregnant - was having nausea and was putting on weight.

The obstetrician said I needed to go to the hospital to have a D & C to have the sac removed. I had eaten which he wasn't impressed about so I was booked in for the following morning.

I remember going to the hospital and sitting in that darkened room. My world had fallen apart. My honeymoon was ruined. I could hear babies crying and knew that I would never hear my baby's cry.

I had the D & C and we were given miscarriage brochures to take home. No counselling. My husband and myself were alone in our grief. We shut ourselves away in the townhouse and would not answer the phone.

A few weeks later we went into the city to apply for Joe's permanent visa. Unknowingly he had overstayed his visa. When he got his electronic visa in the USA he was not given the right information on its conditions. Immigration were understanding but there were rules....he was given a month to leave the country and he could not come back on a visitors visa for 3 years. If there had been a baby he could have stayed and we could have fought the ruling...but a dead baby did not count...that added another knife into the wound in our hearts.

We also had a new puppy which was barking too much and complaints were being made, so we had to leave the townhouse. We didn't have much money and bought a very cheap house. It passed the building inspection but there were many problems with it that were not picked up. The people living in the house also lit a fire in the kitchen the morning of the sign over which we did not know about until we moved in.

There were no locks on any of the doors and the first night we slept in the lounge room with a baseball bat at our heads. The tears poured down my face.

Our world again turned upside down. I took 3 months off work and we went back to the States together. We re-applied for his spousal visa and waited to hear.

While we waited we travelled and did some sight-seeing. We travelled up the east coast and went into the mid-west to visit my husband's relatives. This was a good time though we were extremely stressed out. After arriving back in Miami where my husband lived, I found out that I was pregnant again. We were ecstatic but I was extremely worried about the pregnancy. I had not fully recovered emotionally from my previous miscarriage, I was worried it would happen again and I didn't like not being able to go and see my own obstetrician.

With the stress we were under, I started to bleed. I freaked out big time! My husband raced my to the hospital and I had an ultrasound. The baby was still there with a beating heart and it was called a 'threatened miscarriage'. Soon after I went to see an obstetrician and again the baby was still there with a beating heart. I was so thankful.

I began experiencing morning sickness and I was desperate to go home. The American food just did not taste like Australian food.

My husband's visa came through quickly which was an absolute blessing. We were told it could take years. We then had to separately go back to Australia as we could not get a flight together. The funny thing being I had an empty seat beside me all the way home - I said my guardian angel was with me - though it should have been my husband. Once home I went back to work and preparations were made for our new baby girl.

© 2012 by Jenny Woolsey

No part of this blog may be reproduced without prior permission.

Blog 11 - New Man, New Life

Whilst I was living on my own I found solace in Internet chat rooms. I could not drive due to my visual disability and didn't have the courage to go new places on my own...so chat rooms opened up a whole new world of 'friendships' to me.

Men would take an interest in me which made me feel special....this continued to build my self-esteem.

I met an American guy on-line. I became obsessed with him. We talked as much as we could and he occupied my thoughts all the time.

After 3 months of phone calls and talking he came out to Australia to meet me.

It wasn't the fairytale meeting as planned for though we thought we knew each other, there were idiosyncrasies about each other that we didn't know. There were cultural differences which had to be overcome. And any act that remotely resembled 'control' in my twisted mind, sent me over the edge. I also had no clue how to communicate my feelings as I had shut down that part of me in the previous relationship...so this man had to be very patient with me.

In hindsight he should have run for the hills. But he didn't. He loved me and wanted to be with me. I didn't know what I wanted. He ended up not going back to the USA to live permanently.

We decided that we would get married. I did not know if this was the right decision but he met my list of prerequisites - he was kind to me, not controlling, my parents liked him and he believed in God. Even though I had turned my back on God I still required this for my future relationship so I guess I had not totally rejected God... just felt I needed a break from Him for a while. Luckily God did not turn His back on me and was quietly working in the background causing things to happen which I was unaware of...orchestrating events....He knew that this man was the right man for me.

Before he came out to see me I had emailed heaps of photos to him showing him my face and explaining about Crouzon syndrome. He did not understand what I was talking about because I looked 'normal'. When we were talking about marriage we talked about the syndrome and my 50/50 chance of passing on the gene. He didn't care. He loved me and thought that I turned out great...so there was no reason not to take the risk. A burden was raised from my shoulders. At that time also there was no other option for us to have our own children. We were too old for adoption and there was no genetic testing for Crouzons available in Australia so IVF would have been a waste of time.

My husband also had his own 'thorn in the flesh'. He was born with 'green keepers thumbs' and twisted muscles in his arms. He had had operations too and had big scars on his arms. Being different was nothing new to him.

We thought having children would take a while so I went off the pill before we got married. I found out I was pregnant a month later. We were shocked but excited.


Our wedding day was beautiful. Under blue skies, beside a lake, we were married. We had written poetry to each other and released doves. A harp played in the background. We were of course completely in love and oblivious to what lay ahead for us as a couple.

© 2012 by Jenny Woolsey

No part of this blog may be reproduced without prior permission.

Blog 10 - Teaching, Marriage, Abuse, Divorce

I was appointed to a school for the beginning of the school year. Again I was so excited and also very nervous.

I remember the first day, having to stand up with the other new teachers. My heart had butterflies. My engagement notice was in that day's newspaper but I was too shy to tell anyone.

I found that first year of teaching very difficult. Those suburbia kids had a lot more behavioural problems than the country kids I had experience with. I didn't know how to manage them effectively and had to learn pretty fast. I also had an unsupportive controlling principal who made my life more difficult. She did not offer me any constructive criticism for how I could improve or praise for what I was doing well. She berated me because the desks were too close to the board and because the children did not have pencils. She made me feel inadequate and she told me that she didn't think that I should be a teacher...that I should find a different job. That principal left and God blessed me with a wonderful principal who took me under her wing and helped restore my confidence in my teaching ability. If it wasn't for that caring lady I would not still be teaching and changing children's lives 23 years later!

Now I've mentioned that I became engaged in the January. It was kind of like...break up or get married...so marriage it was.  Preparations were made and a beautiful wedding was planned. The day was lovely and I wore a spectacular dress that made me feel like a princess. Unfortunately an argument on the wedding night set the scene for the rest of the marriage. 

I continued to teach, improving in my skills and expertise. In my second year of teaching I studied my Bachelor of Education. Upon finishing my degree I wanted to have children. My husband said that he was the child of the family. There would be no children.  I tried to persuade him but no. I then started my Master of Education which took me 5 years to complete. During this time I was told that if I got pregnant that I would have to abort the baby. He wasn't going to have a kid with a deformed face. Once I actually thought that I might be pregnant and went to the doctor feeling very scared but I wasn't. With my persistence he did relent to looking into adoption which we were eligible for, but he didn't want people prying into our private lives so we didn't go through with that. 

The years passed and I was daily being destroyed by my husband's controlling ways. I was losing my identity. I was isolated with only one friend who lived half an hour away. No friends near by. I felt so lonely. I could not wear what I wanted to wear, I could not talk to other men, I had to go out where and when he wanted and leave when he wanted to...I had no say. He would scare me with our electric knife and with his martial arts. Home was a horrible place to be.

I began thinking about committing suicide and it consumed my thoughts...but when I was feeling rational I knew that God would not want me to do this. So I prayed and prayed for a way out of the situation.

Finally an opportunity arose. One day after threatening to leave which I had done several times already but never followed through with, I packed a bag and walked out. He chased after me and begged me to come home. I did... We went to Christian marriage counselling but he could not see what he was doing wrong and he didn't understand why I was how I was. I was always curled up in a foetal position on the couch...my counsellor kept saying that God could change him...and yes God could change him as I had seen before in other marriages...but my husband did not want to change - he saw nothing wrong with how he was treating me. God can only work when a person chooses to let Him help them.

I prayed and prayed that God would provide a permanent way out. I didn't want to be in that marriage anymore. I thought that I couldn't just pack up and leave because I didn't know where to go...and he had told me many times that I was his wife and if I ever left he would hunt me down and bring me home... And I believed him.

In my desperation and depression I continued to pray and cry out to God to save me from this beast. He answered. I told the counsellor that I wanted to go home and spend a weekend with my parents. My husband would never have allowed this. The counsellor told my husband that that was a good idea. I rang my parents who were oblivious to what was going on my marriage and said I could come home. I had had some issues with my mum previously and didn't know if she would let me come home, but of course she did.

Mum and Dad welcomed me with warm loving arms, shocked by my state of mind.  Over the weekend I opened up to my parents and asked if I could come back home and stay with them. They were so supportive. I then with my Dad's support rang my husband to tell him that I wasn't coming home. My heart was beating furiously and I was so scared. But I did it. Of course he wasn't happy.

The counsellor rang me and suggested I go back because God could still change him. She also said ignorantly that I might never find another man... I told her that no man was better than being in an abusive relationship. My husband tried all sorts of ways to get me back. I put the ultimatum to him - he gives up his martial arts which I hated and I would come back. He said 'no' so I said 'not coming back' and I stood firm. My Dad nurtured me and helped me to find my voice. He would sit with me when my husband would ring and tell me how great I was at standing up for myself. My Dad was my backbone.

That deep depression lasted for a long time. I went on anti-depressants which helped but most of my depression was psychological messiness. After 6 months of living with my parents I felt ready to live on my own. I went back to my townhouse. My husband would come and stand under my bedroom window and follow me.

I filed for divorce and went through all the proceedings. We split all our stuff and we were both fair in doing so. There were no children so once the divorce went through that was the end of seeing him. I could then start to heal.

I should of been happy that God had helped me to get out of the marriage but my mind was so twisted that I turned my back on Him.

© 2012 by Jenny Woolsey

No part of this blog may be reproduced without prior permission.

Blog 9 - University and Love

I left home and went off to university two hours away from home, My best friend transferred in her job so we could be together. I remember my Dad packing the trailer and taking all my stuff up there. My friend and I went in her car. We were so excited! Independence. We found a flat and the beginning of our independent lives began.

I loved learning and being at university. I was so proud.

We lived close to the university and I would ride my bike. In winter it was freezing cold and I would be wearing gloves, a beanie and my warmest coat.

In my first semester I had to go to a local school to do prac. My supervising teacher commented on my speech and thought that I should not be a teacher due to the way I talked. I had to talk to my supervising lecturer and had to explain to them about my operation. All was ok...I was allowed to continue on.

I had to battle my shyness. I had to battle my low self-esteem. I had to battle my poor self-confidence. I had to use courage. I had to be brave. I prayed a lot that God would help me. It was hard. My determination and will to be a primary school teacher kept me from giving up. Again my self-esteem was tied to how well I did in my subjects. Luckily I did well.

In second year we had to go out into the rural towns and home school the children on stations. Again my report said that I was shy. I found it easy to work with the children but found it really difficult to interact with the adults.


I joined a local church and would be picked up to go. There I met my first husband. He was tall and dressed in fashionable clothes. He took an interest in me and I was flattered. He owned a car so I could to be driven instead of having to ride my bike. He had a computer which few people had - so wonderful compared to my typewriter! He told me he was a Christian so that also fitted my criteria as well. I was in love with having a boyfriend.

This man was abused as a child and was controlled by his mother. How he was treated was how he treated me. He also mistreated his family's pet cat. But naive, bullied, low self-esteem me, did not know that this not a normal loving relationship and that I should have run as far away from him as I could have...instead I accepted it.  I broke up with him once but he came crawling back and I relented. I should not have. This circle I was already entwined in continued for the next 12 years.

After three years I graduated and got a job teaching north of the city.

© 2012 by Jenny Woolsey

No part of this blog may be reproduced without prior permission.

Blog 8 - Another Big Facial Surgery

High school finished. I had gained a placement at university to study Primary school teaching but had to defer for a year so I could have my final major facial surgery.

After many attempts at job seeking, I started an office course. Whilst doing it I secured a job in a bookstore in the city and worked there for 9 months or so and finished studying at night time. It made for long days in the city. It was so good to have money and to learn how to budget it. A life skill.

I would travel into the city on the train with my friend, taking about an hour, chatting all the way. I loved those morning train rides. Back then the trains were diesel and the carriages wooden with bench seats. You always had to wipe the seats down before you sat down and wearing white was not a good idea. So different to today!


Towards the end of the year I went into hospital to have my surgery. I was 18 years old by then and wanted to be in the adult ward. For some reason this was very important to me.

I was really scared about this surgery but desperately wanted it done. I hated looking different. I hated my face. By this time my eyes were back to being bulgy and I had an underbite. I wanted my face to be put back into place again.

Before the surgery I was given a sedative to calm me down. The lady in the next bed wanted to know all the details of what I was going to have done. All I wanted to do was go to sleep and have it all over and done with. She added to my already mounting anxiety.

I woke up in ICU not being able to see and with my jaws wired together again. Deja vu of when I was 9 years old. High on painkillers I saw demons and devils continuously. I would listen to Christian music and pray my heart out to try and make them go...but they wouldn't leave. It was like they were on a continuous loop. I could not open my eyes so they wouldn't go away. Horrific experience.

It was a relief when the head bandages came off and the swelling came down and I could open my eyes. Finally the night terrors left.

Once again I communicated by sign language and writing in a notebook. More soup, soup, soup!

I went back to the ward. When I looked in the mirror and saw my reflection I was shocked at how I looked. I looked by someone had taken to my face with a baseball bat.

Slowly the swelling and bruising went down but it took a long time to go away completely.

I went home with my jaws wired shut and walked around with a pair of wire clippers in my handbag to be used if I was choking or needed to be sick. Luckily they were never used.

Christmas lunch consisted of roast beef and roast vegetables blended up to make a soup. Not the same but yummy nevertheless.

After a couple of months I was swinging on a swing with my friend and the pieces of wire that kept my jaws wired shut, broke. I was going in to have them cut the following week so there was no need to have them fixed. I was finally free.

I went back into hospital to have the splints removed. I then had to undergo speech therapy to help re-train my tongue. It was a long slow process.

The next phase of my life could then begin.

The operation made a huge difference to how I looked. I finally looked 'normal'. My eyes were back to looking more of a normal size and my top jaw was now infront of my bottom jaw. Oh how wonderful it was to walk through the major mall in the city and finally be inconspicuous. Nobody looked at me. Nobody pointed at me. Nobody whispered behind my back. Nobody made comments. Even though my face still had some swelling and bruising I was finally invisible in the crowd. And I loved it! I wanted to sing, dance, shout, scream. It was like the weight of the world had lifted off my shoulders.

I then looked forward to going off to university to do my studies and starting the next stage in my life.

© 2012 by Jenny Woolsey

No part of this blog may be reproduced without prior permission.

Blog 7 - High school

I loved my new face. I felt confident. I felt like I fitted in. The teasing was minimal.

Apart from having to have braces on my teeth, and doctors check ups, the rest of primary school was ok.

My faith was also developing. I loved RE in school and I went to youth group at church. I knew Jesus loved me and was watching over me. I treasured my bible.

Then I hit high school...the bigger world full of opinions and perceptions and taunts. But also a place where I formed some strong friendships which still exist today.

First day of Year 8: Children from miles away came to our local high school. Children who did not know me and what I had been through. I was both excited and nervous to be going there. I was leaving the known and going to the unknown.
Everyone gathered in the assembly hall. Our names were called out and that was the class we were in. I was in 8C...thank goodness with my best friend. I went outside to line up and my first introduction to high school were two boys in my class who stared, snickered and made comments about me. A chill went down my spine. I turned my back on them.


My Changing Face: I noticed in the mirror that my face was changing. My mid face was not getting bigger, it was staying where the surgeons had put it. This realisation was absolutely devastating to me.
Upon my parents questioning the doctors about this, they were told that yes that would happen. The mid face would not grow with the rest of my face. This was a finding from the surgeries that had been performed on children like myself. At the age of 18 I could have more surgery to move the mid face to where it should be. Until then I had to put up with it. A big blow to my self-esteem. Particularly at a time when girls are very self-conscious about how they look. I hated looking different.

Another bout of braces as well

The cruel comments and feelings of rejection continued throughout high school. Both girls and boys were mean to me. Whether they were daily or not is a blur, but there were enough of them to affect me. The name calling has clouded my memories of high school. When I think of high school my first thoughts are the awful names I was called. They have left emotional scars like a hot branding iron.

But when I focus for  awhile and search for the positive nature of high school, memories do come to me. I did have fun times with my friends, hanging out under buildings and in the library, going to the school dances, playing volleyball, being in musicals etc. and I enjoyed most of my subjects - except for Chemistry and Maths which I tried to understand but just couldn't! There were also a few caring teachers who took an interest in me and helped me with my learning and made me feel special. They made it so much easier to walk through those school gates. I am very appreciative to them for taking the time to see me for me.

Teachers never under-estimate the impact you have on your students.

I always aimed for perfection which I never attained. I experienced success and failure, not coping with the failure well at all. My self-esteem was connected to how well I performed. Failing Chemistry did not do my self-esteem any favours.

I involved myself in as many different activities as I could. Again my self-esteem was embedded in my outward activities and achievements.

I also loved acting. It was so good to not be 'Jenny the girl with the elephant man face'... I excelled in this subject.

Throughout high school I continued to grow in my faith. I joined the school Inter School Christian Fellowship group and was involved in lots of activities. These people were my closest friends along with my best friend from primary school. She always stood by me. I also continued to go to youth group and went to church. I knew my God was watching over me. I would often cry out to God in desperation to help me cope with my life and my mixed up turmoil of emotions. I would often sneak into the church and kneel at the altar pouring out my prayers.

As I was getting older, and realising that I was alone with this 'disease', (Anyway, why did I have a disease, I wasn't contagious!) I became to question God as to why I was born with it. I was the only one in my family. It wasn't fair. What was the reason??? There was no support group for me. I had no counselling. The guidance officer wasn't someone you could go and talk to about your problems. There was no adult that I felt I could confide in. No one  understood what I was going through. I felt all alone with what I was coping with.

Outside of school I found security in my local Ranger Guide/Ranger group. I had been in Guides, loving it so much, that I continued on. We were a tight knit group doing heaps of fantastic activities. I loved the camping, the craft, the activities we did, the community service...everything really. I have no negative memories of Rangers. I was loved, I was accepted, I was challenged and I had fun! I achieved my Queen's Guide Award and went to Parliament House to receive my award from the Governor.

This photo is of me at a Girl Guide event. 

I developed two personalities. In fact I developed these in primary school but they became more pronounced when I was a teenager. I had the shy, withdrawn Jenny and I had the extrovert Jenny. Depending on where I was, determined which Jenny was seen.

I also became a chameleon in another way as well. At church and home I would behave in the expected ways for those situations, saying all the right things, doing all the right things....but then when I was left to my own devices did many things that were 'sins' to try and gain acceptance and love. It didn't mean I didn't love God, in fact I loved God obsessively, and suffered from a huge burden of guilt...but teenagers do these things in their mixed up lives. Luckily there were no major consequences from my poor choices.

One day sitting in Biology talking to my friend instead of working, I was talking to her about why did she think I was born with my syndrome. I was desperately trying to find an answer. My biology teacher who obviously was listening intervened and told me that I was given my face 'to glorify God'. I didn't understand it at the time but I do believe that this was a prophesy on my life.

© 2012 by Jenny Woolsey

No part of this blog may be reproduced without prior permission.