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Overwhelmingly appreciative.

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.

Very much.

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.

Team Ivy Day 2012.

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,

for community.

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

A procedure

A needle.

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.

 

Nothing so trivial.

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.

Trusting men

trusting doctors

trusting friends.

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

and then

the trivia night happened.

I know that I always talk about community and its importance,

how it takes a village to raise a child

but I did not fully realise what a wonderful, supportive place we live in.

The people,

the number of people who came to help my girl,

help me

was amazing!

Friends,

family

and teachers.

High school kids.

People who I didn’t know but who knew about Ivy and wanted to help.

Every table was sold out.

Friends made and sold food.

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.

 

 

 

 

 

Things I know about community.

I know I am proud
and feel lucky that my family is surrounded by a wonderful community.
Last week the high school that the biggies all go to had another Team Ivy Day.
They raised $2,500 with  a gold coin donation day
and a bake sale.
Many of the kids dressed up as fairies again (even some of the bravest boys).
The money raised goes to a charity.
Last year (which was the first time Team Ivy came to fruition)
we raised an astounding $10,000 for the hospital ward that Ivy stays in.
It purchased equipment and tools to help parents and their families and the nursing staff
make the hospital experience a little better.
It was largely due to the beautiful online community of bloggers out there, who donated.
I know that all of you showed me the goodness of humanity.
I hadn’t opened up a donation page this year – I felt strange asking again
but the high school still wanted to raise money for us
and I am thankful for that.
It was a very hard decision who to donate the money to,
because so many people have helped our family.
The IDFA has been trying to find its feet in a sea of charities for a while now.
Its aim is to educate others about immune deficiency and support people and their families, just like ours.
Immune deficiency is a disease that is rare  and largely unknown in Australia -
I still have days when I’ll come across medical professionals, who quite honestly tell me that they have never heard of it
and yet,
it can be life threatening and leave people with chronic damage to major organs.
We have been extremely lucky to have had Ivy diagnosed early
and to have a paed who is willing to learn along with us
and an immunologist to guide us through.
At the moment the average age for a child to be diagnosed with a PID is around six.
I know that if it were not for some amazing friends in the United States who contacted us  (thanks largely to this blog)
we would have been floundering for information and support in the early days.
It has only really been in the last twelve months  that we have made  wonderful connections with other families living with immune deficiency, in Australia
and I am so grateful for them
and for the work of the IDFA.
Ivy meeting a new friend, who also deals with immune deficiency.
I know I would love to see this foundation blossom and be able to offer services
that can help and educate.
A real passion of mine is to see children with PID have access to camps and therapy programs
to help them work through and make the most of their lives, while living with this disease.
I know I’d love to see that happen in our country.
For now though,
I know I want to leave you with this slideshow of Team Ivy day 2011 -
together people can move mountains.

 

 

joining in with Shae today.