I see you running your child to therapy when your friends are running their kids to Little League or ballet
I see you slipping out of the conversation when your friends are all chiming in about milestones and test grades.
I see you constantly juggling appointments and meetings.
I see you sitting at your computer for hours researching what your child needs. I see you cringe when people whine about what feels like petty things. I see you spread thin but still going the extra mile for your family. I see you digging for depths of strength you never dreamed you had. I see you showing appreciation to the teachers, therapists and medical professionals who serve your child with you. I see you rising early in the morning to do it all again after another chaotic night. I see you when you’re hanging on to the end of your rope for dear life. I know you feel invisible, like nobody notices any of it. But I want you to know I notice you. I see you relentlessly pushing onward. I see you keep choosing to do everything in your power to give your child the best possible care at home, in school, at therapy and the doctor. What you’re doing matters. It’s worth it. On those days when you wonder if you can do it another minute, I want you to know I see you. I want you to know you’re beautiful. I want you to know it’s worth it. I want you to know you aren’t alone. I want you to know love is what matters most, and you have that nailed. And on those days when you have breakthroughs, those times when the hard work pays off and success is yours to cherish, I see you then too, and I am proud of you. Whichever day today is, you’re worthy, you’re good and I see you. ❤ ~Alethea Mshar
We should always be kind. Kind to animals, kind to the environment, kind to each other. The world needs more hope, more peace, more love and much more tolerance of each other's differences.
I like Ed Sheeran's music but wouldn't call myself a massive fan. I find it hard to identify with singers as I believe most don't live in a world of disabilities or difference. And don't get me started on the women who strut about half naked on stage. Their music seems to play second fiddle to their soft porn.
But today I have a new appreciation of Ed. Why? Because the following video was posted on my Facebook page today. My friends all know my passion for advocacy and spreading awareness of difference and diversity, so I knew it must have something in it that would fit within my agenda. I wondered what. I was definitely curious.
What I heard Ed say surprised me. In particular there were things about Ed that I had never heard reported in the media before that he talked about: 1) He was born with a port-wine stain birthmark on his face and 2) He had a stutter.
By Ed telling his story, he will touch many more hearts in the world, not just because of his music. It is awesome to see people who are looked at as being influences in the world, saying it's cool to be quirky and not to lose your individuality.
This blog has been sitting dormant, as my day-to-day life has gone on by...writing, studying, speaking engagements, being a wife and mother. You know how it is. Even though I've been writing an awful lot, I must admit I didn't think this blog needed updating. My children are growing up, I'm not having the same struggles as I was when they were younger, so my other blog has received my sole attention, http://jennywoolsey.blogspot.com.au/. But in fact that's wrong. In actual fact I do have many things I need to say - they've been accumulating into a giant heap of wriggling issues in my brain. So today being World Down Syndrome Day, I am going to start.
I wrote an article for Down Syndrome Australia for WDSD. It was featured today on their website and Facebook page.
This was the final article out of 21 which have been shared to the world from families and individuals. These articles are all worth reading, and I think they show extremely well that people who are born with Down syndrome, are leading ordinary lives which are fulfilling and exciting. Being born with Down syndrome, is not a negative thing, as doctors and the medical fraternity make it out to be. My blinded ignorant eyes were opened when I ventured into this world - a world I was terrified of - a world that society had told me was going to be awful and why would I want to go into it?
I am here now to stand tall and firm, and tell society off, for making judgements about the value of a human life. My daughter is a joy and IS valuable. She is just like any other child I know - she sings and plays and reads and writes and tells jokes and swims... My daughter has dreams, and hopes and plans for her future. She wants to get a job, get married and drive a car. All normal things. Am I going to stop her because she may be a bit slower than the average child? No way! I am going to support her and help her to achieve to her full potential, just like I do for her sister and brother.
So for today I will end here with my article, the media release from Down Syndrome Australia and a video created for World Down Syndrome Day #notspecialneeds:
Down Syndrome Doesn’t Define You
“I
think your baby has Down syndrome. Why haven’t you been told already?”
said the frank geneticist when we took our one-month-old daughter for
diagnosis. Shock, like a cattle prod slammed to my forehead, shot
through me. The vision of her slanted eyes I had noticed when she was
born, zoomed around my brain. I felt numb. I had known there was
something not quite right with Jessica – she slept way too much and had
feeding problems – but no one we had seen for help had mentioned Down
syndrome.
The paediatrician at her birth had directed us to the geneticist who
we were seeing due to another family genetic syndrome. The wait to hear
what the blood test revealed was excruciating. My reaction to the
‘positive to Trisomy 21’ news was horrific. I didn’t want to look at my
baby or touch my baby. I spiralled down into post-natal depression and I
was filled with fear. I couldn’t see a bright future for my daughter,
and the “I’m sorry” from well-meaning friends didn’t help the situation.
My strong feelings made no sense to me. I knew absolutely no one with
Down syndrome. Somehow, somewhere during my life, I had picked up that
Down syndrome was a really terrible thing for my child to be born with,
and for my family to have to deal with.
Now, nine years on, I wish I could go back in time and talk to the
terrified mummy I was. I would softly tell myself – it is going to be
okay. There is nothing to be scared of. Your daughter will develop her
milestones, she will talk and sing, she will have friends, she will love
swimming, she will go to mainstream school and be involved in
extra-curricular activities, she will have her own personality and
talents, she will have a vivid imagination, she will learn independent
life skills, and she will bring much joy to your family and others
around you. You will love her, cry over her achievements, advocate for
her fiercely and she will be a light in the world. It will not always be
easy, but that is a typical life. Your beautiful daughter will show the
world that having Down syndrome is just one part of her, it does not
define her.
#World Down Syndrome Day 2017 – World Down Syndrome Day 2017
MEDIA RELEASE:
21 March 2017
World Down Syndrome Day, the 21st of March, is an international
awareness day to promote a better understanding of Down syndrome, the
vital and active role that people with Down syndrome play in our
communities and the actions needed to be taken to ensure that people
with Down syndrome are able to realise their fundamental human rights.
Down Syndrome Australia welcomes the opportunity to be part of this
global celebration of people with Down syndrome and effort to combat
stigma and misunderstanding about Down syndrome.
This year the theme for World Down Syndrome Day is “My Voice, My
Community.” As part of our celebrations for this day, Down Syndrome
Australia with the support of the Parliamentary Friends of Down Syndrome
are hosting a World Down Syndrome Day morning tea at Parliament House
on 22 March. This annual event is an opportunity to bring together
politicians, key stakeholders and people with Down syndrome and their
families to celebrate this important day.
This year, we are pleased that we have two people with Down syndrome,
our South Australian Member Ambassadors, James White and Zoe
Kyriazopoulos who will be speaking at the event. We will also be joined
by Disability Discrimination Commissioner Alastair McEwin who will talk
about the importance of community understanding of intellectual
disabilities and the barriers to inclusion faced by people with Down
Syndrome.
This event will also be an opportunity to showcase the latest
international awareness film produced by CoorDown. This film uses
humour to address serious issues around the use of the terminology
“special needs” and highlights that the fundamental needs of people with
Down syndrome are the same as everyone else- the need for education,
employment, access to health care, and the community.
Down Syndrome Australia CEO, Dr Ellen Skladzien said “It is vitally
important that we address the stigma and lack of community understanding
about Down syndrome. A recent survey we conducted of more than 800
families of people with Down syndrome found that approximately a third
of people with Down syndrome and their families had been discouraged
from taking part in everyday community activities or education because
of their disability.”
World Down Syndrome Day is an opportunity to dispel the myths that
surround intellectual disability and to highlight the active potential
of people with Down syndrome. As part of our countdown to World Down
Syndrome Day, Down Syndrome Australia has profiled 21 people over 21
days to highlight the many different ways that people with Down syndrome
are involved in their community. These stories can be found at: http://www.downsyndrome.org.au/news/wdsd/21_stories.html.
NOT SPECIAL NEEDS | March 21 – World Down Syndrome Day | #NotSpecialNeeds by CoorDown
BRISBANE,
June 12 – Children’s author, Jenny Woolsey, is pleased to announce the release
of her debut middle grade novel, Ride High Pineapple.
This
gutsy contemporary realism novel, is a must read for any child or teenager.
Ride High Pineapple is written through the honest eyes of a teenager born with
a rare craniofacial syndrome. She also suffers from severe anxiety. Written as
a journal, the story deals with critical childhood issues; bullying,
difference, mental illness, friendship ups and downs and young love. It also
shows how one can find self-empowerment through sport.
The story
has been endorsed by the Children’s Craniofacial Association in the USA.
Adolescence is a tough gig, but Issy Burgess has a
few added challenges—facial difference, anxiety, and a relentless bully.
Issy’s story of confronting her fears and working through her difficulties will
inspire middle grade readers. Kudos to Jenny Woolsey for writing Ride High
Pineapple. It ticks all the boxes: skateboarding, besties, and boys. And it’s
chock-a-block full of hope, insight, and solid strategies for handling bullying
and managing anxiety. A must for school libraries and school counsellors!
-Alison Stegert, School Counsellor & Kidlit Author
About the Author
Jenny Woolsey is a Christian, teacher and blogger. She is an advocate
for inclusion of disabled children, and for people living with facial
differences and mental illnesses. She has a Diploma of Teaching (Primary),
Bachelor of Education, Master of Education (Honours) and a Certificate of
Creative Writing. Jenny lives in Queensland, Australia. She writes from
personal experience and aims to help children with their social and emotional
wellbeing.
Ride High Pineapple is available on Amazon.com as a paperback and ebook.
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.
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. :)
❤
