Blog 79 - My Thoughts on Wife Divorcing Dad over Baby Son Being Born With Down syndrome

Dad Divorced by Wife Over Son with Down syndrome (link)

The above news story has been flying around the television news and social media this week. It is about a wife in Amenia who gave birth to her son who was diagnosed as having Down syndrome. She didn't want to keep the baby but her husband, who was a New Zealand native, wanted to. This led to the wife divorcing him. The devoted father is now raising funds to help him to take care of the little one back in New Zealand.

This story, along with others, which have popped up recently, such as the surrogate parents who left one of their twins - the one who had Down syndrome, back in Thailand with the surrogate mother, make me think about my own reactions when Jessica was born.

I am against invasive prenatal testing, due mainly to the high risk of miscarriage, and the fact that I wouldn't abort a baby. I had blood tests and scans throughout my pregnancy. Because of my 50/50 chance of passing on Crouzon syndrome, that was the main objective of all the testing. Yes Down syndrome was mentioned and looked for, but ruled out. Jessica's eyes were wider apart than normal. No other differences were found. There was nothing pointing to Down syndrome. We went into the birth thinking that the baby had a mild form of Crouzon syndrome or just wide spaced eyes which many people have.

When I held Jessica immediately after the birth I looked at her eyes looking for Crouzons and a chill went through me. I thought I saw Down syndrome. I didn't say anything to anyone about it. I didn't know until later that Joe had thought the same thing, though he didn't have the chill.

During the week in hospital Joe and I would see the obstetrician and paediatrician whispering to each other when they were examining Jessica but nothing was said to us. Upon leaving the ward, the paediatrician queried whether we were taking her to the geneticist which we were in a few weeks time.

Once we got home Jessica began to sleep for hours on end and wouldn't feed. We took her back to the hospital and they showed me how to force feed her. Things didn't seem quite right but still nothing was said.

At four weeks we took Jessica to see the geneticist. I was in love with this baby. I thought she had a mild form of Crouzons, which was disappointing, but I could cope with it.

The geneticist took Jessica, placed her on the examination table and began to move her arms and legs like we had seen the paediatrician doing. She then sat and looked at me and asked, "What do you think the baby has?" I told her, "Crouzons". The geneticist then proceeded to tell Joe and I that she thought Jessica had Down syndrome and she was surprised that no one had diagnosed it.

At the word Down syndrome my memory spiralled back to the birth when I had looked at her little slanted eyes. I had been right!

The geneticist proceeded to tell us about the different types of Down syndrome. It was all a blur. I felt like a block of ice. Surely this wasn't happening!

Finally the geneticist went on to tell us that she could also have Crouzons as it is a different chromosome that is affected. It was all too much to hear.

We took Jess to have bloods taken for the genetic testing. It was on the way home that Joe and I revealed to each other that we had thought she had Down syndrome at the birth. We just hadn't vocalised it.

The results for the Down syndrome would be known the next afternoon. The Crouzons test would take a few months as it had to be sent to Sydney.

At home I fell apart. How could this happen? I already had two children with high medical needs. Why did I now have a child with Down syndrome?

I was angry, I was terrified. I didn't want to look at Jessica. I didn't want to feed her. I didn't want to touch her.

I felt just like that woman in the story above.

 

The only difference between me and the lady in the story was that I wasn't going to give my baby away. If she had been diagnosed after the birth I wouldn't have wanted to give her away either. She was my baby. She grew in my womb and I was her mum. She knew my voice and I knew her kicks and cries. I just needed time to come to terms with the news I wasn't expecting to hear. Four weeks is a long time to not know that she had Down syndrome. Down syndrome is normally diagnosed quickly.

I was so shocked at my reaction. It confused me. It revolted me. As a teacher I had taught children with a variety of special needs (no Down syndrome)...  so where did this presumption that this was a really bad thing for a baby to be born with, come from? I didn't know anybody with Down syndrome. I didn't know anybody who had a child with Down syndrome... So why did I feel this way? The only conclusion I could come up with, was society told me.

The next afternoon a phone call confirmed what I was praying not to hear. Jessica had Down syndrome and the 'worst' kind, Trisomy 21 where there were three of chromosome 21 in every cell.

There was no counselling. Just a, "I've rung the Down syndrome Association and they will send you a new parent's pack". That was it! Someone from the association was supposed to contact us but we never heard from them.

Joe coped with the news fine. He had a cousin with DS so he was okay with it all. His positivity even made me angry.

I dissolved into a bucket of post-natal depression. I couldn't look at 'normal' babies, particularly those born around the same time Jess was. I was angry. I was mourning. I couldn't even look at the new parent's pack.

I had a real mental battle going on. I had to keep reminding myself that Jess was the same baby who I loved before the diagnosis. Nothing had changed, except she now had a LABEL.

That label meant things.

That label also explained her sleeping and feeding issues. It gave knowledge.

I had to go through the mourning process which took over a year to truly accept what was. This amount of time is normal and in fact the mourning process can take a lot longer for some people.

What had society told me that I should be so scared of?... The intellectual impairment. I had picked up somehow from society, that people who have an intellectual impairment are less than human, that they don't deserve the same rights as people with average or above intelligence. That they won't have a 'good' life.

This is all total rubbish.

Now that Jessica is older, I can say passionately that this is wrong!

Yes she has an intellectual impairment and she has low muscle tone. These two symptoms mean it takes her longer to learn SOME things (notice the word SOME). But Jessica is a little girl. She loves, she cries, she gets angry, she fights with her siblings, she plays, she has her favourite tv shows and pop stars... Jess has an amazing vocab and very good speech. She has an uncanny memory for faces and songs. She loves imaginative play and magic. She loves to swim. Yes Jessica did need to have therapies when she was little but so do many other children. Yes she does need extra help with things but so do many other children. I see life in a different way when I look at it through her eyes. Life is about love and laughter. It is about being carefree and learning at your own pace.

Why children with Down syndrome are on the 'allowed to be aborted' list is beyond me. It reminds me of the genocide of the Jews by Hitler. The Jews weren't perfect so the Nazis tried to eradicate them. People with Down syndrome aren't perfect so they can be eradicated too if the parent so desires.

I could not imagine my life now without Jessica. She is the apple of my eye. Every morning and afternoon she runs to me with a, 'HI MUM', a huge smile and a hug. I feel like a queen and she is my princess. Every day she makes my heart shine. Yes my baby girl has Down syndrome, but she is NOT Down syndrome. She is Jessica first and foremost.


Back to the news story...

I am so glad that the father did not abandon his son, and that people around the world are lending their support. I also pray for the mother who was filled with fear and her society's prejudices. The more of these stories the world hears and cares about, that place value on babies born with Down syndrome, will help to change current attitudes... and that's a good thing!


© 2012 by Jenny Woolsey

Blog 78 - First Day of School 2015

Well it is that time again.
The start of another school year. Uniforms, contacted books, bags, shoes, lunches, hair ...

The alarm was set for 6.30am this morning but a bad night's sleep meant I wouldn't be sleeping in anyway. Jess came into our bedroom at 6.28am to tell us it was school and time to get up. She was surprisingly excited. The other two were already up and dressed.
The morning went smoothly and we were ready early - unsure how long that will last...

Melissa didn't need to be at school until 11.30am so it was just the youngest two who left the house at 8.30am, Nick was dropped off first - to his 2014 room but with a different teacher who was new to the school. Shyness took over as he stood in front of his first full-time male classroom teacher. A quick word with Mr G to let him know that Nick has a craniofacial syndrome and a shunt and is banned from contact sports due to his facial operations and a 'there should be information in his file but we will come and see you soon to tell you about him anyway' and we left Nick to settle himself into the front row. No need to overwhelm the teacher on the first day with all of Nick's history. I knew Nick would be fine. The teacher might not know Nick but the other kids did and he was well liked. It was time to drop off Jessica.

We met with Jessica's teacher and the Special Ed. teachers last week so Jess knew where she was going and understood she was in a new classroom with a new teacher and she was now in Year Three. Miss L had told us that she had taught children with intellectual impairments and ASD and that was such a relief to hear. Teachers without experience in this area seem to get scared of the 'Down syndrome' diagnosis. She was not scared at all but very positive about having Jess in her class (Jess has some ASD behaviours).

We went into the Year Three classroom, found her desk and Jess sat down, looking a bit unsure. Joe pointed out some children in the class she knew from Year Two. One said hello to her. A child in her row asked what her name was. Joe told him. I had a thought and decided to take her to the toilet to help avoid an accident at first break. Then it was time for a kiss and a hug and a good-bye. With a slightly worried heart I left the room. It was a funny feeling. An uneasiness, all due to the unknown.

When you have a child with an intellectual impairment you don't know what they are thinking. Did that unsure look mean she was scared? Would she cope with the new environment? Would she cope with all the changes? Would she cope with the new teacher? Would the new teacher cope with her? Would children play with her? Would the new children accept her? Would the children understand what she was saying? Many questions ran through my mind. Questions I didn't have with my other two children. I wouldn't know the answers to these questions until 3pm or even for days.

On the way out we stopped at the office to leave a message for the new HPE teacher - that Nick is banned from playing any sports or games with contact. The ladies in the office have known Nick since Prep so I knew they would explain to her what he has been through. We have learnt over the years that information often does not get passed on from teacher to teacher. (Nick does not fit any of the categories for Special Ed.)

A couple of hours later it was time to drop off the teen at the high school for a half day. She was unusually quiet and appeared nervous. I hoped she would be fine. I was sure once she saw her besties she would settle. We wished her a good day and saw her disappear into the abyss.

The day went too quickly. Ebay orders, lunch, a nap and it was time to see how their days had gone.

Jess's teacher was the only one I wanted to see in person. How had my angel gone? Did I have any answers to those questions? Outside the classroom Jess had said the day was 'good'. Would the teacher agree? She did (big sigh of relief) with the only problem being that Jess kept getting her food and wanting to eat during lesson time. In the scheme of things I was happy to hear that that was the only difficulty. Jess should soon adjust.

I expected chatter on the way home about the happenings of the day but there was nothing. I put on my cross-examiner's hat and tried to dig for information. I got the following responses from the two eldest: boring, boring only labelled books, don't know my teachers apart from my Prep teacher who went on camp with us last year, don't know what the teacher is like yet - it's only been a day. I was shocked by the lack of enthusiasm. Maybe it was first day letdown.  There were no fireworks.
Jess told me that she played with her friend from Year Two at playtime which made me happy. That answered another of my questions.

So overall Day One appeared to be satisfactory. Maybe a C rating.
We will see how Day Two, Three, Four ... go.


© 2012 by Jenny Woolsey

Blog 77 - Welcome 2015!

It is already the 5th of January, 2015. 2014 has come and gone. As I sit here at my laptop reflecting on the last year, I can confidently say that it was a year of change and a year of healing.
I came into 2014 learning the news that I would no longer be able to teach. This has earlier been  blogged about and it caused great confusion. I lost my identity. I had always taught - that was what I did. Being forced to stop work by my doctor, who had my mental and physical wellbeing at heart, was also hard to cope with. Looking back, he did the right thing but I couldn't see it at the time. I mourned what I had lost and had to adjust to the change - another challenge for me!
The year consisted of many therapy sessions challenging my thought processes. It was a year where I pushed myself out of my comfort zone and did things I had never been brave enough to do before. I grew through these experiences.
In my therapy sessions, as well as dealing with ways to help cope with my anxiety attacks, I also delved into the past. It was time, at the age of 46, to go back through my life. I had to deal with growing up with Crouzon syndrome, in a society that was not always accepting of my facial difference.
As layer upon layer of my experiences, both good and bad, were peeled back, I could feel healing taking over my mind and heart. A few meetings with past influential people also occurred to coincide with this healing, which led to more healing. With that healing came a new found feeling of wholeness and confidence and an acceptance of who I am. I made the decision that no longer was I going to be embarrassed that I was born with a craniofacial syndrome. No more was I going to let it  stop me from achieving my heart's desires. No more did I have to be shy because of my syndrome. No more would I be ashamed that I suffered from anxiety and depression.

I have no idea what 2015 will bring but I know I am entering it as a new woman with hope and the belief that what I put my mind to I will achieve - as a wife, a mother, a writer, the Our Faces Support founder and as a friend.

Happy New Year!


© 2012 by Jenny Woolsey

Blog 76 - Excerpt from I am Isabella

An un-edited excerpt from Chapter One of  my novel   I am Isabella:

*

I looked in the mirror. Oh man another pimple! I hated pimples. Do you get pimples? I don’t get them bad. Some kids’ faces are covered. Mine just come up to have a holiday and then go away. Dabbing some Clearasil on it I prayed that it would have its holiday quickly and disappear. I pulled on my warm freshly ironed uniform and thought about school.

School. Do you like school? I would describe my feelings towards school as love, hate and like. There were things I loved, there were things I hated and there were things I liked. Obvious hey!

I have thought about this so much that I have categories for my feelings: teachers, students, homework.

Teachers. I really liked my English teacher, Miss George. She was my favourite teacher. Miss gave me great marks on my assignments and she helped me when I get stuck. I actually went to her about my secret and she told me that it would be a good idea to tell it. I even rehearsed for her and she told me how I could improve my speech. She’s done that for other assignments too.  Miss liked it when I put up my hand to answer her questions because most of the other kids didn’t pay much attention ... and she was always friendly and nice to me. I would give her an A+ J

I hated teachers like Mr A. He was my maths teacher. Mr A was the opposite of Miss. No encouragement, no help. When I asked for assistance I got, “Look in the book!” accompanied by a harsh expression. Well the book didn’t have a mouth or a brain so it couldn’t explain the maths to me! I would get so frustrated. Mr A. was so unfriendly and never smiled. I would give him an F L

All the other teachers rated in between – I liked them.

Students. I loved hanging out with my friends at school. Without friends school wouldn’t be much fun. Lunchtimes were spent hanging out at the basketball courts where we would chat, goof off and watch the guys play. Sometimes Tilly liked to stir them up by running onto the court, intercepting the ball and throwing it at the goal, or she would dance around the court playing dodge ‘ems. They would always yell at her and snatch it back. It was funny to watch and we would all be laughing our heads off.

Sofia still came to sit with us. I was getting used to having her around. She was alright. Thursdays, second break was Art Club. I loved Art Club. Mr Brady, one of the art teachers, would teach us about different types of media and techniques. We were learning heaps. Maybe one day I could design skateboard decks. That would be cool to do! J

I hated my bullies. Tia and Carla. The price you paid for being different was called a bully. “Hey poppy eyes. Hi fish head. Hi googly eyes. Hey flat face.” I’d heard them all before. In my imagination when they would spit one at me I would see myself slapping their smiles off their faces. L

Tia you already know about. Carla was in Year Eleven. She made herself known to me on my third day of Year Eight. I was walking to Music and heard a voice say, “Hey fish head.” I looked in the direction which was a bad move, and stared straight into her ugly face. Carla said it again, “Yeah you, fish head.” I was in shock because I had never seen her before. I had no clue who she was. I turned bright red and took off. It was like she had lit a fire baton and was rubbing it all over my body. I told Tilly who went on a mission to find out who this witchy girl was. Tilly became Pinnaroo High’s Detective Holmes. And, like Detective Holmes she solved the mystery – very quickly in fact. Carla was known as a school bully it turned out. I was not her only prey. She picked on lots of kids. During her detective work Tilly found out that Carla couldn’t be expelled because she had some disability which made her exempt, so the school put up with her. Didn’t seem right. I didn’t like meeting up with Carla so if I saw her in the distance I dodged her by walking a different way. Sometimes though it just happened. When it did I flashed her my biggest smile and said, “How are you today kitten?” That was Tilly’s suggestion. I even had to practise saying it to her so it would just come out. Carla never knew what to do and she looked at me like a fish had slapped her in the face. In my heart I would actually much rather take a pair of scissors and cut her up into miniscule pieces! Do you get bullied?

Of course there are other girls and guys I talked to at school, otherwise I would be mute during my classes – they were the ones I liked.

Homework. Do you like homework? I actually didn’t mind doing homework, though I would rather be talking to my friends on Facebook. I really liked English tasks probably because it was my favourite subject. Maths not so much. I got stressed out and angry when I was stuck on problems. I often wanted to chuck the textbook in the bin or throw it out the window into our neighbour’s swimming pool… but of course I didn’t. I would keep on trying and most of the time I figured them out. So I would classify homework as love-hate-like. I can do that because it’s my story. J L

*

I pulled on my white sports socks and well-worn dirty sneakers. Hopefully Mum would buy me some new ones soon. I couldn’t imagine being Sofia, having money. My mum didn’t work and Dad was on an okay wage. He was a long haul truck driver so we didn’t see much of him. Money was always tight. Sofia would never have to wait for a new pair of sneakers. I was sure she had several new pairs sitting in her cupboard. Mine had holes in them.

*

© 2012 by Jenny Woolsey

Blog 75 - I am Isabella - MY NEW NOVEL

I am very excited to announce that my teen novel I am Isabella is at the editor's!

This has been a dream of mine for many many years, to write a novel where the main character has Crouzon syndrome. Isabella does!

The story is fictitious but I draw on my own and Melissa's experiences growing up with Crouzons. In the beginning of the story Isabella who is 13 years old, reveals to her Year Nine English class that she has Crouzon syndrome. She had kept her Crouzon syndrome a secret since leaving primary school. Issy had a facial surgery in Year Four which had made her face look 'normal' but her face was growing and changing back to how it was. Her eyes were becoming bulgy again and she was developing an underbite. It was time, Issy bravely decided.

(I have used Melissa's actual speech, with a bit of writer's licence, that she gave to her Year Eight English class this year).

The book follows Issy's first six months of Year Nine. It follows her through her search for her self-identity living with a facial difference. From rejection in HPE dance lessons, to jealousy, friendship ups and downs, to winning an Art Award, being a talented skateboarder and much more.

I am Isabella is a much needed read for any young teen growing up with a facial difference, and also for friends and family.

I am looking for a publisher so if you have contacts please let them know!


Abstract:

Issy Burgess is thirteen, in Year Nine at Pinnaroo High. The school year begins with Issy telling her English class her secret – that she has Crouzon syndrome. Something she has never done.

The year continues with a series of trials and triumphs. Anxiety attacks, hair disasters, bestie fights, braces and bouts of jealousy. Art awards, the school dance, mastering skateboard tricks and new friendships. This six month journey will see Issy struggle and grow as she begins the journey of finding her self-identity.

© 2012 by Jenny Woolsey

Bog 74 - It has been way too long!

Oh my goodness where has the year gone? I last blogged in May. My year which began in despair with my severe bout of anxiety and depression has progressed into great things!

After the thunderstorm comes the rainbow is cetainly true for me!

God works all things out for good, I can also vouch for!

In April I handed in my resignation as a teacher. It was with a very sad heavy heart that I did so. Teaching was my life. It was my identity. Who was I now? Could I still say I was a teacher even though I wasn't teaching anymore?  Of course I was still a mum and a wife - but I needed a job label - I was too young to be a retiree!

What labels do you have attached to you?

Coordinating the local high school's Community Education classes which I mentioned in my last blog has kept me very busy and has given me that new label I desired :) In July there became a position available to teach adult computer classes so I took that on as a new challenge - another new label :)

Over the year life has taken on a 'new normality'.

Having more time on my hands not teaching has enabled me to achieve two of my life goats - one to write a novel and two to start up an Australian support group for facial differences. How many people get to do that?

1) My novel:
I have wanted for many years to write a novel where the central character has Crouzon syndrome. I had written a few rough drafts though the years but nothing seemed right. With the knowledge I got from my writing courses and pointers from my mentor I disciplined myself to keep on keeping on, writing and editing, rewriting and editing... until I was finally satisfied with my final product. Both Melissa and Nick read the book and gave me feedback. They were both very critical and very good at telling me exactly what they thought!

The main character Isabella, 'Issy' is based on Melissa. The story has my own and Melissa's experiences woven into it, along with fictitious events.

The novel is called I am Isabella and it is now at the editor's. I am very excited! My next step will be to get it published which I pray God will work out for me.

2) Our Faces Support www.ourfacessupport.org.au
I have wanted to start a support group for people who have facial differences, living in Australia. There is very little support here. I have already made youtube videos and founded facebook groups but I still feel that there is a need for people to get-together and to communicate outside of social media. I like the American support organisations - they are awesome. So in the last couple of weeks this has come to fruition. Of course we are in the early stages and I am recruiting members (free membership) to get it up and running but it is so exciting!

So stay tuned to find out what is going to happen next!


© 2012 by Jenny Woolsey

Blog 73 - Out with the old - welcome to the new!

This afternoon I enjoyed a wonderful afternoon tea at school. Sitting around the table chatting about old times and current times, were friends of mine. Familiar faces who also happened to be colleagues. This was my farewell retirement afternoon tea from 25 years of teaching at the one school. Twenty-five years of lots of positive and negative experiences in my personal and professional life.
I didn't expect to be leaving teaching now but multiple doors closed one after another at the end of last year, due to my anxiety and depression, and I was not able to return. I have kept my faith that God was in control and knew what was going on.

From bad always comes good.

I have seen this time and time again throughout my life. And again in this situation I am seeing it happen.
From the end of 2013, God has been working. He gave me a part-time job which helped me to overcome shyness and become more self-confident; He showed me a writing course I could do to improve my skills (I have a dream to be a published writer); He put me in a writer's group; He brought me a writing mentor; He has led me to meeting the chaplain at the local high school which is taking me to working with girls. None of this would have happened if I was back in the classroom this year.

Things are meant to happen, even if we do not understand them at the time.

I am looking forward to seeing where else God is going to take me.

© 2012 by Jenny Woolsey