Wednesday, 23 December 2015

Blog 81 - My new blog: Jenny Woolsey - The ABCs of Life

Hi everyone,

I have started a new blog called Jenny Woolsey - The ABCs of Life.

My focus of this blog, is to help, encourage and inspire people with their walk through life. From my own and my family's challenges, failures and achievements, I would like to share some wisdom, in the hope that someone will find it valuable.

Each blog post is a letter of the alphabet. This week's was H is for Happiness. I hope you will support me by reading it and leaving comments.

This blog, Crouzons, Downs and Me...Love and Life, will continue. But as most of the hard stuff medical wise, seems to be over for a while, I probably won't be writing in it as much. It's purpose was primarily to help people going through the same situation.

But I would love a following on my new blog. :)

Sunday, 18 October 2015

Blog 80 - Just 'doing life', as they say.

My last blog post was in February. Where has the year gone? What have I accomplished? What have my children accomplished?
In a nutshell, many things. Some small, some large. Some achievements have been invisible to others around us, whereas others, such as the children's sporting and academic awards, were recognised by the wider community. My award was for bravery, being nominated by a beautiful friend. A treasure.

This school term is the last one, for primary school, for Nick. Last week I wrote on the calendar all of the end of year celebrations and graduation. Look out for my reflection on that in a month or so. I am unsure as to how I'm going to be feeling.

Crouzon syndrome wise, the year has gone well for Melissa and Nick. The plastic surgeon and eye surgeon consulted about Melissa's astigmatism (turned eye) and deliberated over when it could be corrected. A MRI was performed. The plastic surgeon finally made the decision that he doesn't want to move her eye sockets again. If she needs further surgery later on, he'll use other techniques... The eye surgeon, with this information, decided that, yes, he would operate. But he described her eyes as a 'complicated case' so he would be consulting with others about how to perform the surgery. I guess when you've had your eye sockets and eye muscles moved around it would be classed as 'complicated' and even 'unique'... We are expecting the date to be in 2016. There are no surgeries in Nick's foreseeable future. :)

Medically Jessica is fine. Her heart is functioning well. Earlier in the year, her thyroid level was high but after re-testing had gone back to normal. Academically and with her low muscle tone, she has continued to progress. She stops to smell the roses, as they say, every day. Her love of singing continues. Last term Jessica sang Let It Go in front of the whole school in the Talent Show, and did all the actions perfectly. It's a shame everything can't be taught through song.

Yesterday and today, her topic has been 'veins', and where are our veins and what do they do? There is always a colourful array of topics going around in her mind.

A few months ago Jessica was experiencing a lot of anxiety with going to school. She is mainstreamed. Her reasons were unclear but her headaches and sore tummy were frequent. I became all emotional and wanted to pull her out of school and protect her, but that wouldn't have helped our long term goal for her: To be an active participant of the community. Instead I problem solved. Picking up on words she was repeating, I worked out the sources of stress were the playground, Music and PE lessons. On consultation with the school, she was given alternative places to play if she wished, and I purchased ear muffs for noise. Things have since calmed down.

Running off has basically stopped, though in saying that, we lost her yesterday after Church, when she decided she wanted to go back into the church to play the drums...  It is much less stressful to take her out and about.

Jessica is improving slowly in her swimming. Her low muscle tone makes it difficult but she is determined. One day Jess wants to join Swim Club, like Nick has done.

Finally, I am in the best place with my anxiety and depression, that I have ever been in. I am content and at peace. I know how to manage my anxiety and I try really hard to keep my life in balance. My writing has been a wonderful world for me to disappear into, and through writing I have found new friends with a common interest. The pain of leaving teaching, due to my mental illness, is dissolving away. I have found a new purpose for my life. :)

Saturday, 7 February 2015

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 Raises $350K

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.

Purple Clover's photo.

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

Tuesday, 27 January 2015

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

Monday, 5 January 2015

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