Posts Tagged ‘community’
Firstly, thank you.
Actually - just thank you.
Thank you for all of your ideas and your willingness to help a mostly perfect stranger out with the cost of her daughter’s growth hormone.
Thank you for all of the good thoughts, positive vibes, prayers and hopes that something good would come our way.
Thank you to the friend who wanted nothing for her birthday but to buy Ivy a week’s worth of HGH and for her sister who wanted to help too,
for the nurse in far Queensland, who is upset with the flaws in the system
and the anonymous person who slipped $150 into my account without so much as a word,
my sister in law and our fairy godparents who keep flicking us food cards at exactly when we are at the very end of our budget
and couldn’t come at a better time.
Thank you to all of you who wouldn’t take no for an answer.
There is now a PayPal account floating around, for which I have no words. (Thank you Trish and Fiona)
I am truly appreciative
and a little overwhelmed.
I’m grateful that the endocrinologist is fighting and also that Ivy’s no-longer-new doctor, paed and (no)pain doctor are behind us 100%.
I honestly feel as though Ivy is cared for.
Thank you to the friend who told a kind journalist about our fight
and for that journalist who ran Ivy’s story on the front page of the newspaper.
For our friend in the hospital human relations team
and for the television reporter, who filmed the girl and I after we had just finished having a bone density scan – the final need for the endocrinologist to appeal.
Thank you for everyone who shared, tweeted and for those who were angry for Ivy and I.
Those stories and reactions prompted a personal response from our local member, with assurances that the matter was now at the top of the list for consideration with the Department of Health.
What can I say?
For every piece of negativity that you hear about the media (traditional, social or otherwise),
there is so much good that is accomplished
and because of it I am very hopeful that we may have a positive outcome soon.
I will never, ever be able to repay all of the kindness that everyone has shown me
but I will definitely give it my best shot
and Ivy will know that people everywhere helped her to grow.
When I was in high school we had out of uniform days to raise money for a charity of one kind or another.
At the time, I’m not sure I understood the impact that something like that could have on another person
but I do now.
In its third year of running Team Ivy Day at the biggies’ high school,
I am in awe and amazed by these kids every single day.
I am thankful for them.
It’s an out of uniform day, yes
but the whole school makes it a day for Ivy (and Noah) too.
They come dressed as fairies and super heroes
and other weird and wonderful characters,
they come with cupcakes and other things to sell
they come with money that many of them have earned themselves at after-school and weekend jobs
and they put everything in for the day.
This year the kids put on a concert
and a soccer game of students versus teachers.
It was nothing short of wonderful.
To add to this seems hard
but on top of it all
groups of students and parents (and one amazing local business) had been quietly donating blood and pledging it to Ivy
starting the first Team Ivy blood drive.
I’m so grateful -
for people willing to donate blood,
for the teenagers and teachers who put themselves out there to make Ivy feel like a princess and Noah feel like a super hero,
The money raised this year is going to John Hunter Children’s Hospital
but it is going to a very specific program.
The high school will be the first sponsors to get the Bravery Beads into the hospital
for chronically ill kids -
kids just like Ivy, who have to endure so many things.
I could write so much more.
Instead, here is a slideshow of the day.
The speech I gave is underneath
and it still can’t express how thankful I am.
At the beginning of this year Ivy went through eight weeks of hospitalization – from March until May she stayed in the ward away from her family and her school and her friends.
She went through four operations, had at least 20 attempts to put a needle into her veins, four different antibiotics each day and still she became sicker.
She needed oxygen, heart monitoring and she had the need for intensive care twice during that time.
Every day she had blood tests and other invasive testing and by the end of it she was so traumatized that by the time we were ready to be discharged the sight of a tiny subcutaneous needle left her crying and frightened.
Unfortunately, Ivy needs to have medication through a needle every day, sometimes she has two and some days it’s three but every day was becoming a nightmare for her because of them.
A friend suggested we try a beads of bravery program to help her be able to see how courageous she actually was and to give her something tangible
so that she could literally see everything she had been through and every fear that she had conquered.
Each coloured bead that is added means something.
A blood test
but this program was not available in our hospital for kids like Ivy.
It had been in the oncology unit for several years but nothing like it was in place for chronically ill children, who go through so much each and every day of their lives
so we started our own.
It changed the way Ivy looked at the procedures she needed to have because she could look forward to choosing colourful beads at the end of each one to represent all she had been through.
Then we thought, why couldn’t we bring it to the hospital for other children
and that’s what all of you – fairies, super heroes, amazing characters and teachers out there are doing today.
Mt View High School will be the first sponsors of The Beads Of Bravery Program at John Hunter Children’s Hospital for chronically ill kids.
You are all doing something wonderful today – you are giving those kids extra strength to keep going,
you are giving them something to keep that says “I did this and I got through it okay”.
You’re giving them something to hold onto in really bad times
and I am thankful for you because of it.
This year’s Team Ivy Day is the start of something special.
Someone wrote in a comment, a few weeks ago,
that maybe I needed to learn to trust
and see that people as a whole are primarily good
and genuinely want to help.
Maybe that’s true.
I am a believer that each moment happens so that we can learn from them
and I know that trusting other people has always been a big deal for me.
Or, perhaps, it’s trusting that people don’t always expect something in return for their kindness.
Maybe that’s it.
When a teacher (now so much more) from Ivy and Noah’s school suggested
a trivia night to help raise the money for Ivy’s pump
and friends around the world wanted to donate money
I didn’t know how to feel.
My first instinct was to say ‘no’ and just bunker down and do it myself because that is what I’ve always done.
I admit to feeling a little uptight,
a little embarrassed that things had escalated to the point of considering help.
It’s a hard thing to admit you are struggling.
It’s a hard thing to accept.
I thought about everything that the girl had been through to get to this point -
maybe the nine weeks inside the hospital needed to happen to get the doctors to think outside of the square
maybe leaving Ivy with barely any peripheral access was the only way to have the subcutaneous Ig approved.
Perhaps I needed to learn that I have to let go and believe the paed has got this -
that he knows the girl well.
Or maybe I needed to find my ability to trust.
So, when the trivia night idea was raised,
when friends wanted to donate money
I thought that maybe I should just let go and believe in the good of humanity
instead of second guessing it.
I asked for donations of goods and friends came through in such an amazing way.
Money came in from everywhere and I felt very grateful
the trivia night happened.
how it takes a village to raise a child
but I did not fully realise what a wonderful, supportive place we live in.
the number of people who came to help my girl,
High school kids.
People who I didn’t know but who knew about Ivy and wanted to help.
Every table was sold out.
Raffles were sold out by the book full.
A coin toss was held.
I felt so overwhelmed and thankful.
At the end of the night
and with donations from friends and family
enough money was raised for Ivy’s pump, which comes in at a total of $2,500 altogether, with all of it’s attachments
and for another one too that we can donate back to the hospital.
Thank you just doesn’t seem enough
but thank you.
Thank you for helping me to learn to trust,
thank you for helping me to see the amazing communites,
who have surrounded my family with love.
Thank you for helping me to believe that something wonderful will happen.
joining in with Shae today.