Hello dear friends,
Just a quick post here because this little chicken is exhausted!!!!
(edit- seemed to have taken 90 minutes so far!)
Most of Amelia's and Tom's Christmas presents are clothing, bedding and shoes that parents would normally buy throughout the year.
I would normally buy it anyway, so why not get it at Christmas!
We just give it to them at Christmas (and it is more name brand than normal!)
Today was wash day and get them put away into wardrobes amongst the general Christmas clean up!!!!
This is just a really quick post to thank you all for everything.
Seriously thankyou for the support and love.
Thank you for putting up with all the crap we have been dealt with (and my verbal crap) and supporting us in all that comes next.
A massive HUG to those that that have been through the stress, pain, heartache and
"FUCK YOU".
It will continue coming and the more we smile and laugh, the more amazing life will be.
One life.
And the more "FUCK YOU" because it will continue.
Tom and Amelia have both shown Scott and I in the last 18 months that anything and everything can be turned into a positive.
We can work through it and add any medication, appointment and hospital stay to our regime!
Someone recently came to our house for about the fourth time for a visit.
She said "I never knew there would be so much laughter, sarcasm and affection here.
I thought it would be really sad".
(She is obviously nuts).
Amanda (me) has obviously not shown the paranoid, stressed and crazy part of herself enough yet (no mention of anyone else!).
Anyway...
This Post.
Tomorrow marks 7 weeks of post cigarette smoking.
NEVER EVER ACHIEVED.
HUGE
MASSIVE
We have tried to stop this addiction too many times to mention
(this addiction has been compared to heroin!)
our attempts? sooooooooooo many times that it was a joke in the amount counted.
I think I got to 1039 attempts!
Patches failed.
Champix failed.
Cold turkey lasted 3 hours for Amanda - me!!!!!
(confusion occurring on who, when, why and how).
I am not going to list everything that has happened in our lives to stop smoking!!!
You all know the crappy list.
Going outside to "calm down, leave the hospital, hang up the phone from a doctor, receive a pathology result, start the day etc" ...........
was a smoke.
WAS A SMOKE.
A child that you gave birth to is suddenly terminal at 7 years old in December 2010.
When you have no F'N idea.
Smoke.
Suddenly another is T1 Diabetes on Christmas Eve 2013.
When you have no F'N idea.
Smoke.
The final straw of smoking was the cost.
SO MUCH money.
$43 a packet of smokes of 40!
I know many of you need to recover from that comment.
But it is an addiction that many of you would never understand unless you lived it.
In the last 2 years it has risen in cost dramatically. Stupidly.
For those past and present smokers, remember when it was $7:50 for 40?
It is now $43.00.
Another final straw for us was also the cough and breathing and pain from yourself, in the chest laying down.
Overnight thinking you were having a heart attack.
OMG the slight pain and breathing.
38 years old and having trouble breathing?
The final straw was my own dad on his hands and knees asking "who is going to look after the kids when you are gone?".
"I can't". he said.
He is pretty much the only one.
My dad has been the only regular constant.
His own body is shutting down.
Someone who is there every single week for us.
EVERY SINGLE WEEK.
He can't care for them anymore in his 70's.
Scott was 40 smokes a day.
I was about 20.
The money.
The debt.
"I am sorry Amelia and Tom , we cant afford what you want.
We have no money.................."
Is what we regularly said.
"I just need to stop at the shops for a $43 pack of smokes though on the way home"
Silently stressed.
This is what we regularly said and had no idea how we felt.
SERIOUSLY?
How fucked is that?!
I don't think I need to say anymore.
But maybe we do.
Maybe we did not and do not know how to stop.
We had tried and could not seriously function when we tried.
The racey mind and vision.
We would last like 2 hours and be in the car to buy some.
If you do not understand cigarette, heroin or ice withdrawn, you would not understand this.
It is shit.
And how cigarettes is legal, we have no idea!
We experienced serious withdrawal vision of....
Anger.
Blurred vision.
Agitation.
Crawled up in a corner........
The withdrawal from heroin or ice is exactly the same.
How is this nicotine shit legal?
We were so incredibly disgusted in ourselves.
But we did not know how to stop.
It was so upsetting!
After 28 years, cigarettes were equal with sleep and food in our daily requirements.
28 years of all day and everyday.
The budget included smokes with the so called "essentials".
We are now so ashamed.
It got us though Amelia's "terminal" diagnosis (thank you Kim for letting me have one or 50) and Tom's diabetes.
I am that upset now, SERIOUSLY, it is so embarrassing.
It was our food.
But then this one man changed everything.
The Hypnotist we booked............
A man that does stage shows, travels to Las Vegas and does AFL Club parties etc
7 weeks post hypnotism.
We feel like we are part of some sci fi movie where someone has opened our brain and removed the smoking component.
It is still hard.
But 85% less hard than normal.
We still fight with withdrawl, but it is minor compared to the other times.
It is actually easy compared to the other times.
But now you just eat or walk the dog or go to bed to battle with the withdrawls it is SO minor.
I am now the size of a house, BUT for the first time in FOREVER I don't give a f'n shit.
I know that weight can be lost, but smoking felt like it would never happen.
NEVER.
And it has.
IT SERIOUSLY HAS.
We have actually quit smoking.
The kids are still sceptical about us going outside, but Scott and I are like "you have no idea. It is like it has been taken out of our thinking!".
They will not understand for a while, because it is all that they have ever known!
Another finally.......
Tom's school report says he is 12- 18 months months ahead academically in reading, writing and maths areas.
We actually no longer care about this for his future.
And I mean that seriously.
Many people at his school (past and present) have pointed out (or messaged and emailed me) many other assets that they recognise in Tom that will be his assets in life recently.
Past and present teachers that want to add to the so called "portfolio" I am learning about.
It has been incredible and so emotional.
As everyone who knows me knows, I have read messages and letters that made me literally shake.
This child (Tom) caused SOOOOOOO much trouble earlier on in his life.
But we tried our best to stay strict and follow through with discipline.
I spent years holding his bedroom closed for timeout, even while people visited.
I took him home from birthday parties when he behaved badly.
The worst lasted 6 years.
I remember asking Scott "what does it mean if you love your own child, but don't like them as a person?".
(So many of you struggle on here with your own boys. You have messaged me or told me.
Please screen shot this or write it down. Look back on Tom and what has changed.
I honestly do not believe it was us. It was just him needing direction, structure, boundaries and "missing out").
I so incredibly appreciate all of the messages and emails.
He is starting to become what we spent 6 years creating.
Everyone seems to believe he will be so incredibly driven and determined that he will be whatever he wants to be.
He will be kind and caring and defend those being hassled.
(He already is from what I am being told and messaged).
I have received so many messages from parents this year complimenting him in various situations defending those being picked on.
"STOP" he apparently yelled and glared at bullies in front of everyone, witnessed by students, staff and parents this year.
I have actually asked staff and his friends and they described this.
Who could possibly ask for anything more?
Amelia is going to her first respite weekend in February.
It began as 2 kids from school that can verbally talk.
Amelia asked for me to approach the parents of 2 more children to come with them.
They have no communication skills.
One talks through a communication device as best as he can and the other cannot talk at all.
For the one that cant talk at all, I approached his mum and told her Amelia's suggestion for the weekend away.
"What?
Are you serious? "
she asked.
"No one has ever asked to be with him and socialise with him.'
He is 15 and no one wants to be with him".
Then the mum began crying.
Well Amelia has asked for him to join her.
She just asked because she wants him there.
Imagine that.
As always I wonder, why have I been GIFTED these 2 kids.
I regularly feel like the postman or courier for Amelia and Tom.
But then I see other people and draw from their strength.
Is that my role in life or is it my energy for my personal weakness?
My role for the person that I needed to be?!
Very long "quick" message.
Sweet Dreams xxx
Love to all
Tuesday 26 December 2017
Sunday 24 December 2017
Merry Christmas 2017
Hello dear friends,
Merry Christmas!
I am so over listing my pain and sorrow of virtually caring for a child in constant palliative care.
No one wants to hear it and I know longer want to write it.
Amelia is SO much more and so am I.
No one will ever understand and I would never expect them to.
From now it will be facts and positives only!
ENJOY!!!!!!!
It is after midnight in this little house of ours and I want to wish everyone an awesome day tomorrow......................................................
today?!
It has once again been a "topsy turvy" year in this house, but as we all now probably realise,
it always will be.
7 years ago today we were mourning the diagnosis of a terminally ill daughter (aged 7).
Still alive aged 14 now!!!!!!!!!!!!!!!!!!!!!!
DOUBLE the time.
4 years ago today we were living in hospital with the diagnosis of a son with type 1 diabetes (aged 7).
Still as active and loud as ever now!!!!!!!!!!!!!!!!
The medication and food diary becomes routine for both kids!!!!
EVERY year Amelia plans Christmas Eve and Christmas Day as soon as her Birthday finishes.......
In JUNE!!!!!!
We have completed her "list of requirements for Christmas" to her happiness..... I think so far this year!
First is Santa's list.
Next is Santa's runway!
Santa's runway was quite extravagant this year.
It involved 3 houses with google map drawings across the road.
(arrows, please go here next; pictures and offerings of carrots...... quite high tech).
Unfortunately due to circumstances out of our control this year, Tom found out about Santa and his true magic.
None of us were near the stage yet (especially Tom), but it happened.
After 48 hours (and constant questions of "EXPLAIN?!") our amazing neighbours looked after Amelia while we explained "STUFF".
After 2 days of devastation, Tom did what he always he does.........
He turned it into a positive.
He would help us be Santa.
Be SANTA!
His ideas and his excitement was inspirational.
Tom has insisted on wrapping ALL of Amelia's Santa presents.
At 10pm tonight he was helping build the swing set across the road with massive enthusiasm for kids 6 years and younger!!
He insisted on helping me grate the carrots and leave the reindeer poo at all the neighbours driveways (something I have done for years).
"Teach me please" he laughed!
So we did it whispering!
But as Scott and I held Amelia's sack open and Tom excitedly threw everything in at 11:30pm,
I really started crying.
I was seriously pathetic!
"Why" they both asked.
"Because this is huge and the end of something special" I said.
"And he is taking it too damn positively!!".
"It is ok. All my friends in class explained it nicely".
"Thank you mum and dad for letting me help you with this.
I now know how much effort you go to.
I know this is special and important for future memories for you and me about Amelia".
Tom said.
(I seriously do not make this shit up. Tom will read this one day and verify).
Sometimes what he says sounds so damn rehearsed, but it is genuinely him.
To be so sad and devastated and then to be so positive!
Finally....
No one knows except 5 people....
Not even Tom...........
RCH want Amelia "swabbed" for an antibiotic drip for an infection under the skin.
It was suggested in a call on Friday 22/12/17.
This would mean a stay in hospital.
"Not Christmas" I said " PLEASE".
"It would destroy her. Please wait till next week".
Thank goodness they listened.
I am just on watch for increased tiredness and major loss of appetite and fever.
(mastitis like affect).
We are taking a general oral anti while we wait.
We are now seeing them 28/12/17.
We are going to SO enjoy watching Amelia open the presents from Tom and Santa tomorrow and cross everything we do not need to move to a ward next Thursday.
Amelia has waited 6 months for today!!!!!!!!!!!
MERRY CHRISTMAS EVERYONE
PLEASE appreciate every single day.
LOVE to you every single one of you.
This is probably my Grandpa's last Christmas Day.
But as he said
"I have had 91 of them.
I have lived my life.....
Amelia is only 14".
xxx
Merry Christmas!
I am so over listing my pain and sorrow of virtually caring for a child in constant palliative care.
No one wants to hear it and I know longer want to write it.
Amelia is SO much more and so am I.
No one will ever understand and I would never expect them to.
From now it will be facts and positives only!
ENJOY!!!!!!!
It is after midnight in this little house of ours and I want to wish everyone an awesome day tomorrow......................................................
today?!
It has once again been a "topsy turvy" year in this house, but as we all now probably realise,
it always will be.
7 years ago today we were mourning the diagnosis of a terminally ill daughter (aged 7).
Still alive aged 14 now!!!!!!!!!!!!!!!!!!!!!!
DOUBLE the time.
4 years ago today we were living in hospital with the diagnosis of a son with type 1 diabetes (aged 7).
Still as active and loud as ever now!!!!!!!!!!!!!!!!
The medication and food diary becomes routine for both kids!!!!
EVERY year Amelia plans Christmas Eve and Christmas Day as soon as her Birthday finishes.......
In JUNE!!!!!!
We have completed her "list of requirements for Christmas" to her happiness..... I think so far this year!
First is Santa's list.
Next is Santa's runway!
Santa's runway was quite extravagant this year.
It involved 3 houses with google map drawings across the road.
(arrows, please go here next; pictures and offerings of carrots...... quite high tech).
Unfortunately due to circumstances out of our control this year, Tom found out about Santa and his true magic.
None of us were near the stage yet (especially Tom), but it happened.
After 48 hours (and constant questions of "EXPLAIN?!") our amazing neighbours looked after Amelia while we explained "STUFF".
After 2 days of devastation, Tom did what he always he does.........
He turned it into a positive.
He would help us be Santa.
Be SANTA!
His ideas and his excitement was inspirational.
Tom has insisted on wrapping ALL of Amelia's Santa presents.
At 10pm tonight he was helping build the swing set across the road with massive enthusiasm for kids 6 years and younger!!
He insisted on helping me grate the carrots and leave the reindeer poo at all the neighbours driveways (something I have done for years).
"Teach me please" he laughed!
So we did it whispering!
But as Scott and I held Amelia's sack open and Tom excitedly threw everything in at 11:30pm,
I really started crying.
I was seriously pathetic!
"Why" they both asked.
"Because this is huge and the end of something special" I said.
"And he is taking it too damn positively!!".
"It is ok. All my friends in class explained it nicely".
"Thank you mum and dad for letting me help you with this.
I now know how much effort you go to.
I know this is special and important for future memories for you and me about Amelia".
Tom said.
(I seriously do not make this shit up. Tom will read this one day and verify).
Sometimes what he says sounds so damn rehearsed, but it is genuinely him.
To be so sad and devastated and then to be so positive!
Finally....
No one knows except 5 people....
Not even Tom...........
RCH want Amelia "swabbed" for an antibiotic drip for an infection under the skin.
It was suggested in a call on Friday 22/12/17.
This would mean a stay in hospital.
"Not Christmas" I said " PLEASE".
"It would destroy her. Please wait till next week".
Thank goodness they listened.
I am just on watch for increased tiredness and major loss of appetite and fever.
(mastitis like affect).
We are taking a general oral anti while we wait.
We are now seeing them 28/12/17.
We are going to SO enjoy watching Amelia open the presents from Tom and Santa tomorrow and cross everything we do not need to move to a ward next Thursday.
Amelia has waited 6 months for today!!!!!!!!!!!
MERRY CHRISTMAS EVERYONE
PLEASE appreciate every single day.
LOVE to you every single one of you.
This is probably my Grandpa's last Christmas Day.
But as he said
"I have had 91 of them.
I have lived my life.....
Amelia is only 14".
xxx
Wednesday 20 December 2017
Hello Dear Friends,
It is entering the end of 2017 and so many of you have travelled such an emotional journey with us since the beginning...2011.
So many have travelled your own with us.
Emotional to us means...
SAD-
Cerebral Palsy (2006)
Amelia's diagnosis of Ataxia Telangiectasia (2010) and
Ovarian Cancer(2016).
Three of the biggest scares.
(Regularly mentioned "go home and cherish her. We don't know how long she has").
Amelia finding out she is Terminal and the amazing Scott coming in and doing the most magnificent explanation of research and health and "we don't know".......
(If I seriously did not have him........).
Amelia slowly lost the ability to walk during grade 1..........
(many of you saw her at school, walking and playing - being pushed over because it was funny to watch her fall by nasty kids).........
dancing, climbing and running before the walker.
Amelia in AFO's,
then a walking frame and
then a wheelchair as her legs froze as the disease of Ataxia telangiectasia took over.
My torment as a mother feeling like we are in palliative care indefinitely began.......
We still are.
BUT I will have that over anything else.
ABSOFRICKENLUTELY.
To have this precious child here beats any stress, depression, torment and pain.
Even now I feel like I have a toddler constantly needing help.
When will she be taken?
No one knows and can help me with an answer.
But I also DO NOT want an answer.
I only want to know what to avoid.
KEEP HER HEALTHY is all they say.
KEEP HER WALKING so her legs do not go numb......
I now need a new left hip and back fusion in the lower disks.
But it is worth it.
SO incredibly worth it.
KEEP HER WALKING.
Her legs can still walk and are walking tandemly with mine.
Tom dealing with the mental pain and of watching Amelia and knowing the truth so young....
and working through it better than anyone else........
ANYONE ELSE.
Blowing people away with his love for his sister.
He is amazing and is going to be THE most amazing adult.
Is helping us ALL get through.
He is A PAIN IN THE NECK in a million other ways....
BUT the way he is with Amelia, would melt anyone's heart.
To find him feeding Amelia (while I answered a phonecall) when he was 6 would melt the hardest of hearts.
Without me having time to ask.
It now happens regularly.
Tom has continued on this same pathway.
He is supposedly part of the "cool" kids and yet is well known to still stick up for those that are "quirky", "coloured skin" and "different" by yelling "STOP".
(I have collected many, many messages from parents over the years about this).
The kids supposedly know and listen and do STOP.
Proud is not strong enough a word right now.
And Scott leaving the corporate world because of the overall pain and time off needed etc
It is shit and also amazing.
Life is looked upon differently now.
HAPPY-
(Amelia's regular drinking (plain water) has just been take off her).
Next it will be eating.
Her swallowing process is shutting down.
It is the process for her disease.
Horrendous in "quality of life"
(She is a mess about it.).
Amelia's sarcasm and humour and most recently FOUL mood helps greatly.
This one is incredibly hard to describe unless you witness it.
It comes so incredibly out of the blue, we all fall over!
IF you have stuff taken off you (that is normal-eating-etc) you crack it.
You know what is happening.
You absolutely crack it.
- UNDERSTAND.
Disabled people regularly have a "label".
A-T more so.
One where they cannot talk, understand, do what they want or communicate
Amelia's school teaches something SO different.
They teach these kids how to do all of the above.
The commercial on TV we all waited so patiently for a few years ago came.
Melbourne zoo with Howie and Kate Howard.
Disneyland.
Anyone who has ever entered our house.
We have LOVE.
We have PROTECTION.
We hear it regularly - the difference to so many other families and also similar.
(we also have depression, meltdowns and anxiety!).
We have REALITY.
Soooooooo much more to write in the coming days.
Love to you all.
xxx
we will get through this.
Honesty in the coming days xxx
It is entering the end of 2017 and so many of you have travelled such an emotional journey with us since the beginning...2011.
So many have travelled your own with us.
Emotional to us means...
SAD-
Cerebral Palsy (2006)
Amelia's diagnosis of Ataxia Telangiectasia (2010) and
Ovarian Cancer(2016).
Three of the biggest scares.
(Regularly mentioned "go home and cherish her. We don't know how long she has").
Amelia finding out she is Terminal and the amazing Scott coming in and doing the most magnificent explanation of research and health and "we don't know".......
(If I seriously did not have him........).
Amelia slowly lost the ability to walk during grade 1..........
(many of you saw her at school, walking and playing - being pushed over because it was funny to watch her fall by nasty kids).........
dancing, climbing and running before the walker.
Amelia in AFO's,
then a walking frame and
then a wheelchair as her legs froze as the disease of Ataxia telangiectasia took over.
My torment as a mother feeling like we are in palliative care indefinitely began.......
We still are.
BUT I will have that over anything else.
ABSOFRICKENLUTELY.
To have this precious child here beats any stress, depression, torment and pain.
Even now I feel like I have a toddler constantly needing help.
When will she be taken?
No one knows and can help me with an answer.
But I also DO NOT want an answer.
I only want to know what to avoid.
KEEP HER HEALTHY is all they say.
KEEP HER WALKING so her legs do not go numb......
I now need a new left hip and back fusion in the lower disks.
But it is worth it.
SO incredibly worth it.
KEEP HER WALKING.
Her legs can still walk and are walking tandemly with mine.
Tom dealing with the mental pain and of watching Amelia and knowing the truth so young....
and working through it better than anyone else........
ANYONE ELSE.
Blowing people away with his love for his sister.
He is amazing and is going to be THE most amazing adult.
Is helping us ALL get through.
He is A PAIN IN THE NECK in a million other ways....
BUT the way he is with Amelia, would melt anyone's heart.
To find him feeding Amelia (while I answered a phonecall) when he was 6 would melt the hardest of hearts.
Without me having time to ask.
It now happens regularly.
Tom has continued on this same pathway.
He is supposedly part of the "cool" kids and yet is well known to still stick up for those that are "quirky", "coloured skin" and "different" by yelling "STOP".
(I have collected many, many messages from parents over the years about this).
The kids supposedly know and listen and do STOP.
Proud is not strong enough a word right now.
And Scott leaving the corporate world because of the overall pain and time off needed etc
It is shit and also amazing.
Life is looked upon differently now.
HAPPY-
(Amelia's regular drinking (plain water) has just been take off her).
Next it will be eating.
Her swallowing process is shutting down.
It is the process for her disease.
Horrendous in "quality of life"
(She is a mess about it.).
Amelia's sarcasm and humour and most recently FOUL mood helps greatly.
This one is incredibly hard to describe unless you witness it.
It comes so incredibly out of the blue, we all fall over!
IF you have stuff taken off you (that is normal-eating-etc) you crack it.
You know what is happening.
You absolutely crack it.
- UNDERSTAND.
Disabled people regularly have a "label".
A-T more so.
One where they cannot talk, understand, do what they want or communicate
Amelia's school teaches something SO different.
They teach these kids how to do all of the above.
The commercial on TV we all waited so patiently for a few years ago came.
Melbourne zoo with Howie and Kate Howard.
Disneyland.
Anyone who has ever entered our house.
We have LOVE.
We have PROTECTION.
We hear it regularly - the difference to so many other families and also similar.
(we also have depression, meltdowns and anxiety!).
We have REALITY.
Soooooooo much more to write in the coming days.
Love to you all.
xxx
we will get through this.
Honesty in the coming days xxx
Tuesday 7 November 2017
Evaluating
Hello Friends,
As another year draws to a close, I reflect on what has been another tumultuous year in hospital stays and appointments.
I am happy to say that everything has been settled with medication though.
We now have a very long list of medications that Amelia needs to take daily.
I no longer expect any year to be "clear sailing" and hospital free.
Amelia now has Ataxia Telangiectasia, Type 1 Diabetes and Gastroparesis.
She is also on Ovarian Cancer survivor.
Our 11 year old son also has Type 1 Diabetes.
Amelia is a different child of late.
Her sense of humour is in abundance (wish I could have filmed her reaction to Nana's banana fritter and 2 scoops of ice-cream today at Chinese!).
Amelia is talking non-stop and laughing constantly.
She is questioning things and wanting to know everything.
After a recent discussion, Amelia tells me "After what I have been through recently, I want to laugh lots and live my life happy. This is the new and improved me!".
I love it!
Tom is going well and we have finally decided on a High School for him.
It is a great relief to know where to apply now.
I love hearing about all of his friends and their antics!
Scott and I have come to a realisation recently and I hope it will be like a new start for us individually, as a couple and as family.
Recently I had a birthday.
I suffered another bad depression spell leading up to it.
I ended up not wanting to celebrate it and just wanted the day over and done with.
The kids did not really pick up on it, but poor Scott cops all the comments and knows that I am not doing well.
I saw 43 as a climb down the mountain.
43 as the downward climb on a pinnacle of life.
(Silly I know).
We are just EXISTING..... not living and loving life.
Scott and I get up everyday and do what "we have to do".
Medications, calls from schools (which is daily), toileting showering and entertaining.
Medical appointments and running a house.
It is monotonous and draining.
It is repetitive and boring.
I used to love getting out of the house and working.
I looked at my birthday as "Why?"
Why have I been gifted such a horrible and painful life.........
That will only become more painful in the future?
Why am I looking after a 14 year old child with needs like a baby?
Why am I going to have to nurture her through at the end?
I cannot sleep in, because she needs to go to the toilet.
Then she needs tablets and needles and food within a certain timeline.
Then lunchtime and dinner are the same.
I cannot rest, because she wants entertaining.
Tom wants someone to play basketball and cricket with in the backyard.
I am tired.
I am physically, mentally and emotionally exhausted.
I know Scott is too.
We both struggle to smile and laugh now.
Tomorrow night we are being hypnotised to quit smoking.
Hopefully it is the first step to living, creating and loving our own lives.
One thing stopping us from dealing with the daily regime.
We are busy creating an amazing life for the kids.......
Why not us too?
xxx
As another year draws to a close, I reflect on what has been another tumultuous year in hospital stays and appointments.
I am happy to say that everything has been settled with medication though.
We now have a very long list of medications that Amelia needs to take daily.
I no longer expect any year to be "clear sailing" and hospital free.
Amelia now has Ataxia Telangiectasia, Type 1 Diabetes and Gastroparesis.
She is also on Ovarian Cancer survivor.
Our 11 year old son also has Type 1 Diabetes.
Amelia is a different child of late.
Her sense of humour is in abundance (wish I could have filmed her reaction to Nana's banana fritter and 2 scoops of ice-cream today at Chinese!).
Amelia is talking non-stop and laughing constantly.
She is questioning things and wanting to know everything.
After a recent discussion, Amelia tells me "After what I have been through recently, I want to laugh lots and live my life happy. This is the new and improved me!".
I love it!
Tom is going well and we have finally decided on a High School for him.
It is a great relief to know where to apply now.
I love hearing about all of his friends and their antics!
Scott and I have come to a realisation recently and I hope it will be like a new start for us individually, as a couple and as family.
Recently I had a birthday.
I suffered another bad depression spell leading up to it.
I ended up not wanting to celebrate it and just wanted the day over and done with.
The kids did not really pick up on it, but poor Scott cops all the comments and knows that I am not doing well.
I saw 43 as a climb down the mountain.
43 as the downward climb on a pinnacle of life.
(Silly I know).
We are just EXISTING..... not living and loving life.
Scott and I get up everyday and do what "we have to do".
Medications, calls from schools (which is daily), toileting showering and entertaining.
Medical appointments and running a house.
It is monotonous and draining.
It is repetitive and boring.
I used to love getting out of the house and working.
I looked at my birthday as "Why?"
Why have I been gifted such a horrible and painful life.........
That will only become more painful in the future?
Why am I looking after a 14 year old child with needs like a baby?
Why am I going to have to nurture her through at the end?
I cannot sleep in, because she needs to go to the toilet.
Then she needs tablets and needles and food within a certain timeline.
Then lunchtime and dinner are the same.
I cannot rest, because she wants entertaining.
Tom wants someone to play basketball and cricket with in the backyard.
I am tired.
I am physically, mentally and emotionally exhausted.
I know Scott is too.
We both struggle to smile and laugh now.
Tomorrow night we are being hypnotised to quit smoking.
Hopefully it is the first step to living, creating and loving our own lives.
One thing stopping us from dealing with the daily regime.
We are busy creating an amazing life for the kids.......
Why not us too?
xxx
Monday 9 October 2017
The Mother
Hello dear friends,
I am writing to you all from the point of view of a full time carer and average woman.
A mother and a person.
I am NOT writing about my children.
Hopefully that will not get me into trouble!
I have decided that it is time to make a few changes around here as well as address a few personal issues.
Amelia and Tom are doing so incredibly well in so many areas, that my own personal life has come into focus.
I have gone crazy.
Literally.
I feel like I am possessed by the devil or something.
My mind is racing, I talk like I have ADHD and I verbally say ANYTHING!
I know this and I want to change it.
It feels weird.
For a lot of this year, I have shown my impatience, anger and low tolerance.
Whether it be in person, online or in my head.
It appears that I may be going through Early Menopause.
(Scott has cancelled the scheduled exorcism, thank goodness!).
I have shown displeasure at so many things that I do not have enough time to write them all.
Seriously.
It has been REALLY bad.
I thought that after 7 years caring for Amelia, full time, that it had all caught up to me.
I was seriously packing my bags to start a new life.......in my mind!
(and other crap that would scare you).
This year has been a serious mind fuck on so many levels and so many things have happened, I thought everything else was to blame.
My life has so many answers towards my behaviour, BUT all my behaviours were totally out of character.
Totally and absolutely.
I could see it and did not know the answer.
Scott started talking to me calmly (otherwise I probably would have punched him for the mood I was in) about early menopause.
I read the symptoms and it is "spot on".
We just need to wait on the blood tests now.
(otherwise I think I may be fucked and locked up in a mental institution).
After reading information of women selling their businesses in panic and leaving their families for isolation in country France, I finally feel sane.
Sane, that I am not alone.
Early menopause may be the answer to my recent behaviour.
(it looks like about 7 months that I have been REALLY odd. No jokes from close friends!).
Amelia requires constant care and persistent timing for needles and food.
She is intellectual and requires constant stimulation.
Even having visitors over or going out to friends places has Scott and I constantly helping her engage.
I give everything I can to both kids, outside of the basic house chores.
I want the most amazing life and opportunities for each child.
But recently I have put my hand up to both of them and said "No. Stop".
I am human too and I am mentally, physically and emotionally exhausted.
I do not have time to wash my hair or vacumn the floor.
I have finally accepted that I need help and to work through finding ME again.
Due to positive and healthy discussions with the kids recently, everyone is very excited about the meeting later this week about a fully funded carer to come and help me 10 hours per week with Amelia.
They can entertain Amelia while I fold washing, cook dinner or take Tom to kick the footy.
All the things Amelia calls out to me for during ......or I feel bad about .........or just generally do not have time for.
AND it is fully funded.
Part of my stress on financial and health issues will also be kind of taken care of with a booking made for hypnotherapy to quit smoking.
Both Scott and I.
A proven record and excellent reviews.
(we may be a test case with our stress levels!)
This is my life too and I need to actually live it as well.
(No children were really mentioned during this piece).
xxx
I am writing to you all from the point of view of a full time carer and average woman.
A mother and a person.
I am NOT writing about my children.
Hopefully that will not get me into trouble!
I have decided that it is time to make a few changes around here as well as address a few personal issues.
Amelia and Tom are doing so incredibly well in so many areas, that my own personal life has come into focus.
I have gone crazy.
Literally.
I feel like I am possessed by the devil or something.
My mind is racing, I talk like I have ADHD and I verbally say ANYTHING!
I know this and I want to change it.
It feels weird.
For a lot of this year, I have shown my impatience, anger and low tolerance.
Whether it be in person, online or in my head.
It appears that I may be going through Early Menopause.
(Scott has cancelled the scheduled exorcism, thank goodness!).
I have shown displeasure at so many things that I do not have enough time to write them all.
Seriously.
It has been REALLY bad.
I thought that after 7 years caring for Amelia, full time, that it had all caught up to me.
I was seriously packing my bags to start a new life.......in my mind!
(and other crap that would scare you).
This year has been a serious mind fuck on so many levels and so many things have happened, I thought everything else was to blame.
My life has so many answers towards my behaviour, BUT all my behaviours were totally out of character.
Totally and absolutely.
I could see it and did not know the answer.
Scott started talking to me calmly (otherwise I probably would have punched him for the mood I was in) about early menopause.
I read the symptoms and it is "spot on".
We just need to wait on the blood tests now.
(otherwise I think I may be fucked and locked up in a mental institution).
After reading information of women selling their businesses in panic and leaving their families for isolation in country France, I finally feel sane.
Sane, that I am not alone.
Early menopause may be the answer to my recent behaviour.
(it looks like about 7 months that I have been REALLY odd. No jokes from close friends!).
Amelia requires constant care and persistent timing for needles and food.
She is intellectual and requires constant stimulation.
Even having visitors over or going out to friends places has Scott and I constantly helping her engage.
I give everything I can to both kids, outside of the basic house chores.
I want the most amazing life and opportunities for each child.
But recently I have put my hand up to both of them and said "No. Stop".
I am human too and I am mentally, physically and emotionally exhausted.
I do not have time to wash my hair or vacumn the floor.
I have finally accepted that I need help and to work through finding ME again.
Due to positive and healthy discussions with the kids recently, everyone is very excited about the meeting later this week about a fully funded carer to come and help me 10 hours per week with Amelia.
They can entertain Amelia while I fold washing, cook dinner or take Tom to kick the footy.
All the things Amelia calls out to me for during ......or I feel bad about .........or just generally do not have time for.
AND it is fully funded.
Part of my stress on financial and health issues will also be kind of taken care of with a booking made for hypnotherapy to quit smoking.
Both Scott and I.
A proven record and excellent reviews.
(we may be a test case with our stress levels!)
This is my life too and I need to actually live it as well.
(No children were really mentioned during this piece).
xxx
Tuesday 3 October 2017
Having a break
Hi friends,
I have decided to take a long break from blogging indefinitely.
Times have changed, the culture has changed and our family has changed.
In December of this year, it will be 7 years since Amelia was diagnosed with Ataxia Telangiectasia.
So much has happened during that time and your support has been indescribable.
Amelia and Tom now take great offence to me writing about them.
People are more confident and willing to disagree and argue about the sensitive topics I write about.
Everyone is allowed an opinion and I will never disagree with that.
I just do not have the time or the energy to monitor what is said.
I am making a long list of what I personally would like to address and achieve, in the near future, and I am excited about it.
I have repeatedly lectured you all about living life and making every second count.
It is now my turn.
As a mother quite often does, I have made sure that happens for everyone else, except me and my marriage.
Scott and I are still amazing together, but we have become partners in parenting a 14 year old that still has the needs of a baby.
We do not have time alone or discussions without children.
We will finally be addressing the need for a permanent carer (that Amelia will get to know over many months) so we can actually have a night alone once a month.
Currently it is twice a year.
I cant even fold washing without Amelia constantly calling out to me.
This will require many forms to fill out and to source funding from goodness knows where.
I have enrolled in a "stress on carers" course and am aiming on 1 walk per day to clear my head.
Writing a blog as intense as this one takes it's toll and I need to start living again.
We all know I have lost many friends.
I now have panic attacks and struggle to leave the house.
I know I do not "publish" very often, but I am always writing........just not publishing.
I need to stop and smell the flowers again.
I need to find Amanda again, because at the moment she is lost.
xxx
I have decided to take a long break from blogging indefinitely.
Times have changed, the culture has changed and our family has changed.
In December of this year, it will be 7 years since Amelia was diagnosed with Ataxia Telangiectasia.
So much has happened during that time and your support has been indescribable.
Amelia and Tom now take great offence to me writing about them.
People are more confident and willing to disagree and argue about the sensitive topics I write about.
Everyone is allowed an opinion and I will never disagree with that.
I just do not have the time or the energy to monitor what is said.
I am making a long list of what I personally would like to address and achieve, in the near future, and I am excited about it.
I have repeatedly lectured you all about living life and making every second count.
It is now my turn.
As a mother quite often does, I have made sure that happens for everyone else, except me and my marriage.
Scott and I are still amazing together, but we have become partners in parenting a 14 year old that still has the needs of a baby.
We do not have time alone or discussions without children.
We will finally be addressing the need for a permanent carer (that Amelia will get to know over many months) so we can actually have a night alone once a month.
Currently it is twice a year.
I cant even fold washing without Amelia constantly calling out to me.
This will require many forms to fill out and to source funding from goodness knows where.
I have enrolled in a "stress on carers" course and am aiming on 1 walk per day to clear my head.
Writing a blog as intense as this one takes it's toll and I need to start living again.
We all know I have lost many friends.
I now have panic attacks and struggle to leave the house.
I know I do not "publish" very often, but I am always writing........just not publishing.
I need to stop and smell the flowers again.
I need to find Amanda again, because at the moment she is lost.
xxx
Friday 1 September 2017
Palliative Care UPDATE
Hello fear friends,
My last post created quite the reaction on Facebook.
To the point that I had to delete it and all of the amazing comments of love.
People that have travelled palliative care, people that are travelling it and those that believe no one should be travelling it commented and it became quite upsetting.
The comments were heated, full of passion and many were let hurt.
But I know they only came from personal experience and knowledge.
This post is not to recreate that upset.
AT ALL.
This post is only to explain my pain, of the previous post, further.
If you want to argue, do it elsewhere.
Amelia's Project is selfishly about her life, our family life and my emotions.
Sorry if that offends.
But it is not appropriate to argue and be offensive towards others on here.
Thank you to my mild mannered, logical and extremely kind husband for stepping in.
He NEVER comments until he is pushed to be horrified.
It is kind of humerous that when we met at 15 years of age, I was the shy naive one.
Now the roles have reversed.
But as he said on Amelia's Project page (in response to one of my posts) writing is my only outlet.
Don't make it a vicious cycle of nasty comments to make me stop posting.
Nasty comments get you nowhere.
I struggle with the scenario of our life on a daily basis.
His comment actually meant so much to me.
I was a mess for the reasons I had written.
He was the only one to see the affect on me the day after.
He was the only one to see peoples comments and how I reacted to that.
Scott has no outlet.
He is just kind, sweet and amazing.
Amelia has written the most amazing piece about him for Fathers Day, it would make anyone's heart melt.
Actually the staff member who helped her write it has approached me and asked for him to come into class one day.
She wants to meet him.
She has never seen Amelia speak so clearly and passionately about anything before.
Her words were "He sounds amazing".
He is.
He is very different than when I first met him, but MY girlfriends still come to "speak to Scott".
He is sweet and caring and logical.
He will tell you like it is.
He is an amazing judge of character and will call someone out for what he believes they are.
He is always right.
Me, not so.
But to return to my original post.......
When palliative care was mentioned at RCH, there were many other words mentioned.
When I came home Tuesday and wrote that post....
I did not mention them at the time, because I was SO overwhelmed with emotion and processing that my post came out as a MASSIVE blurrrrrrrrr.
I needed to write to process and understand what had occurred.
When you have been living with a child for almost 7 years with a supposed terminal illness, you do enter a daily life and routine that helps you forget the logistics of a complex disease like Ataxia Telangiectasia.
Breakfast, lunch, dinner and sleep became normal.
Laughing, living and existing appears normal.
In our family, laughter and sarcasm occur daily.
Being proud and congratulating each other is a regular occurrence.
The suggestion of Palliative Care was sudden.
It shattered my window of routine.
BUT it was the words in our appointment of "inevitable", "realistic" and "one day you will choose to cease treatment" that broke me.
I seriously stared in shock.
How could you ever cease treatment?!
DO NOT ever destroy hope in a parent!
Getting Palliative care onboard was scary and it was not explained that it could be for 30+ years.
The only people I know that have joined palliative have since passed away.
That is the point I came to you from.
Just remember sometimes I post from a point of possibly no return.
I can be so incredibly low and devastated, that I see no way to help Amelia and us.
Writing brings me straight out of that mindset.
It helps me see properly again.
It may not be correct and that is totally ok.
But it is also quite accurate in recording the journey of a mother going through what we are.
Just imagine a brain and thinking actively typing on here!
Welcome to me!!!!!
Amelia is not going anywhere at the moment.
It is just a new team to help us.
It was not explained and I was uneducated.
We will not be "ceasing treatment" anytime soon.
Thank you for listening
xxx
My last post created quite the reaction on Facebook.
To the point that I had to delete it and all of the amazing comments of love.
People that have travelled palliative care, people that are travelling it and those that believe no one should be travelling it commented and it became quite upsetting.
The comments were heated, full of passion and many were let hurt.
But I know they only came from personal experience and knowledge.
This post is not to recreate that upset.
AT ALL.
This post is only to explain my pain, of the previous post, further.
If you want to argue, do it elsewhere.
Amelia's Project is selfishly about her life, our family life and my emotions.
Sorry if that offends.
But it is not appropriate to argue and be offensive towards others on here.
Thank you to my mild mannered, logical and extremely kind husband for stepping in.
He NEVER comments until he is pushed to be horrified.
It is kind of humerous that when we met at 15 years of age, I was the shy naive one.
Now the roles have reversed.
But as he said on Amelia's Project page (in response to one of my posts) writing is my only outlet.
Don't make it a vicious cycle of nasty comments to make me stop posting.
Nasty comments get you nowhere.
I struggle with the scenario of our life on a daily basis.
His comment actually meant so much to me.
I was a mess for the reasons I had written.
He was the only one to see the affect on me the day after.
He was the only one to see peoples comments and how I reacted to that.
Scott has no outlet.
He is just kind, sweet and amazing.
Amelia has written the most amazing piece about him for Fathers Day, it would make anyone's heart melt.
Actually the staff member who helped her write it has approached me and asked for him to come into class one day.
She wants to meet him.
She has never seen Amelia speak so clearly and passionately about anything before.
Her words were "He sounds amazing".
He is.
He is very different than when I first met him, but MY girlfriends still come to "speak to Scott".
He is sweet and caring and logical.
He will tell you like it is.
He is an amazing judge of character and will call someone out for what he believes they are.
He is always right.
Me, not so.
But to return to my original post.......
When palliative care was mentioned at RCH, there were many other words mentioned.
When I came home Tuesday and wrote that post....
I did not mention them at the time, because I was SO overwhelmed with emotion and processing that my post came out as a MASSIVE blurrrrrrrrr.
I needed to write to process and understand what had occurred.
When you have been living with a child for almost 7 years with a supposed terminal illness, you do enter a daily life and routine that helps you forget the logistics of a complex disease like Ataxia Telangiectasia.
Breakfast, lunch, dinner and sleep became normal.
Laughing, living and existing appears normal.
In our family, laughter and sarcasm occur daily.
Being proud and congratulating each other is a regular occurrence.
The suggestion of Palliative Care was sudden.
It shattered my window of routine.
BUT it was the words in our appointment of "inevitable", "realistic" and "one day you will choose to cease treatment" that broke me.
I seriously stared in shock.
How could you ever cease treatment?!
DO NOT ever destroy hope in a parent!
Getting Palliative care onboard was scary and it was not explained that it could be for 30+ years.
The only people I know that have joined palliative have since passed away.
That is the point I came to you from.
Just remember sometimes I post from a point of possibly no return.
I can be so incredibly low and devastated, that I see no way to help Amelia and us.
Writing brings me straight out of that mindset.
It helps me see properly again.
It may not be correct and that is totally ok.
But it is also quite accurate in recording the journey of a mother going through what we are.
Just imagine a brain and thinking actively typing on here!
Welcome to me!!!!!
Amelia is not going anywhere at the moment.
It is just a new team to help us.
It was not explained and I was uneducated.
We will not be "ceasing treatment" anytime soon.
Thank you for listening
xxx
Tuesday 29 August 2017
Heartbroken
Hello dear friends,
Please be warned that this post may leave you feeling the way I am feeling right now.
Sad and heartbroken.
I am not looking for sympathy or gossip mongers.
(believe me, both have appeared and been suggested before).
I just write to expel stuff from my mind.
That is all........
Today we ventured into RCH for another long day of appointments.
With so many departments dealing with Amelia right now, the appointments have multiplied and therefore we have to attend more regularly.
Developmental Medicine - supposed cerebral palsy/rediagnosed with Ataxia Telangiectasia 2008
Immunology/allergy - 2010
Oncology - cancer 2016
Gastroenterology - gastoparesis 2017
Endocrinology - Type 1 Diabetes 2017
As there is now a new department at RCH (only heard about on the news) called "complex care", you can understand my push to be referred to it.
It allocates 1 nurse to you, to try and collaborate and communicate for you.
To be the central person for all departments.
All of these departments have no direct number and just book appointments at their own whim, for your child, before looking at what other departments have done in advance.
Today 2 appointments were booked minutes apart.
Recently, we had 4 appointments made, on 4 separate days...... One after the other.
We live 75 minutes away, so that is just ridiculous.
One nurse (in complex care) would co- ordinate all of these appointments into one, or at least 2 days.
Everyone on here has followed the torment of the last 15 months.
We went from dealing with A-T only, to a hell of a lot more.
I keep thinking that the feeling of the heart racing, the uncontrollable shakes and the brain in overdrive (cannot think properly because the brain is racing) will become better controlled with new development.
It is the only way to describe panic.
Or maybe it is just my own coping mechanism in general.
The loss of friends because they cannot interact with you.
But it doesn't change each time, and I realise now that it never will.
This person (my spirited Amelia) that I have encouraged, supported, fought for, stood by and treated as part of my everything, is my child.
This person that I have given up paid employment for, lived with 24/7 on so many occasions and devoted myself to, IS MY LIFE.
Just a few days ago, after so much sickness and being home with me, I said to Scott,
"It is not natural to be together so often and for such a large amount of time" (months).
"She is losing her sense of identity and so am I".
"We are both going insane never being separated!".
This past week has grounded me and reminded me, personally, about what is important.
Amelia's younger brother requested to present a speech (that he personally wrote) to an audience.
He had never requested or shown any interest in something like this before.
It was all about his feelings living our life and how Amelia was his inspiration.
We had to leave early because all of a sudden I chose to lose it and cry uncontrollably.
I think some people understood the words, "I am just so proud of him".
It was the most amazing speech I think I will ever hear.
And today........
I was asked to give permission to refer Amelia to the Palliative Care department.
Yes.
Process that if you are a mother or a father.
Just stop and think how you would cope.
Process that if you have lived the last 6+ years of tried to be normal.
Constantly working on the positives and HOPE.
I have tried so fucking damn hard.
Living 24/7 with this amazing kid that inspires every single part of my existence.
PALLIATIVE CARE.
(I can only go by their own medical research and my own.
Things seem to be happening a lot quicker and differently for us).
Supporting and preparing you for death in the future.
Possibly the near future.
A doctor suggesting NOW is the time.
There is so much more that was said and so much more provided afterwards to defend this request......
I just cannot describe through my tears everything.
I am so sorry.
I just cannot stop crying.
I just bring to you a mother shattered.
TOTALLY shattered.
Nothing can ever prepare you for the next stage.
She is my everything.
I just love her with everything I have.
Look at the photo at the top of this blog and tell me you could understand something like this.
True happiness.
Thank you for being there.
xxx
Please be warned that this post may leave you feeling the way I am feeling right now.
Sad and heartbroken.
I am not looking for sympathy or gossip mongers.
(believe me, both have appeared and been suggested before).
I just write to expel stuff from my mind.
That is all........
Today we ventured into RCH for another long day of appointments.
With so many departments dealing with Amelia right now, the appointments have multiplied and therefore we have to attend more regularly.
Developmental Medicine - supposed cerebral palsy/rediagnosed with Ataxia Telangiectasia 2008
Immunology/allergy - 2010
Oncology - cancer 2016
Gastroenterology - gastoparesis 2017
Endocrinology - Type 1 Diabetes 2017
As there is now a new department at RCH (only heard about on the news) called "complex care", you can understand my push to be referred to it.
It allocates 1 nurse to you, to try and collaborate and communicate for you.
To be the central person for all departments.
All of these departments have no direct number and just book appointments at their own whim, for your child, before looking at what other departments have done in advance.
Today 2 appointments were booked minutes apart.
Recently, we had 4 appointments made, on 4 separate days...... One after the other.
We live 75 minutes away, so that is just ridiculous.
One nurse (in complex care) would co- ordinate all of these appointments into one, or at least 2 days.
Everyone on here has followed the torment of the last 15 months.
We went from dealing with A-T only, to a hell of a lot more.
I keep thinking that the feeling of the heart racing, the uncontrollable shakes and the brain in overdrive (cannot think properly because the brain is racing) will become better controlled with new development.
It is the only way to describe panic.
Or maybe it is just my own coping mechanism in general.
The loss of friends because they cannot interact with you.
But it doesn't change each time, and I realise now that it never will.
This person (my spirited Amelia) that I have encouraged, supported, fought for, stood by and treated as part of my everything, is my child.
This person that I have given up paid employment for, lived with 24/7 on so many occasions and devoted myself to, IS MY LIFE.
Just a few days ago, after so much sickness and being home with me, I said to Scott,
"It is not natural to be together so often and for such a large amount of time" (months).
"She is losing her sense of identity and so am I".
"We are both going insane never being separated!".
This past week has grounded me and reminded me, personally, about what is important.
Amelia's younger brother requested to present a speech (that he personally wrote) to an audience.
He had never requested or shown any interest in something like this before.
It was all about his feelings living our life and how Amelia was his inspiration.
We had to leave early because all of a sudden I chose to lose it and cry uncontrollably.
I think some people understood the words, "I am just so proud of him".
It was the most amazing speech I think I will ever hear.
And today........
I was asked to give permission to refer Amelia to the Palliative Care department.
Yes.
Process that if you are a mother or a father.
Just stop and think how you would cope.
Process that if you have lived the last 6+ years of tried to be normal.
Constantly working on the positives and HOPE.
I have tried so fucking damn hard.
Living 24/7 with this amazing kid that inspires every single part of my existence.
PALLIATIVE CARE.
(I can only go by their own medical research and my own.
Things seem to be happening a lot quicker and differently for us).
Supporting and preparing you for death in the future.
Possibly the near future.
A doctor suggesting NOW is the time.
There is so much more that was said and so much more provided afterwards to defend this request......
I just cannot describe through my tears everything.
I am so sorry.
I just cannot stop crying.
I just bring to you a mother shattered.
TOTALLY shattered.
Nothing can ever prepare you for the next stage.
She is my everything.
I just love her with everything I have.
Look at the photo at the top of this blog and tell me you could understand something like this.
True happiness.
Thank you for being there.
xxx
Friday 18 August 2017
Time and Development
Hello Friends.
Hard to believe that it is August 2017 already.
The time seems to be passing by faster every year.
Amelia has entered a new stage of her growth and maturity that brings me to comment.
She is now more fragile and delicate in her emotional health.
I interpret this being hormonal (as she is now 14 years old) and battling mentally with her disease and development.
Recently in hospital, she hit me.
Amelia would be horrified to know that I mentioned this.
She is incredibly upset that it even happened.
BUT one test that the doctors wanted, required me to do it.
It was humiliating for her.
I have explained to her that she has no way of expressing her anger, frustration and humiliation.
I have explained that she has learnt from her mistake and it won't happen again.
The day after, I had quite a prominent scratch across my face.
It is kind of funny to be consoling the perpetrator, instead of the victim.
I hope that we have reassured Amelia enough to understand how she can expel this anger in the future.
--------------------------------------------------------------------------
Something that is always evident, is the usual right of passage for a mother and daughter.
I understand that Amelia and I spend an immense amount of time together and growth and development (because of her disability and disease) will never be equal to another 14 year old.
I personally only know this kind of situation with her now.
Unless she is at school, or one other persons house, it is our life.
Recently I introduced Amelia to a movie series that was unashamedly a massive part in my life a few years ago.
The Twilight Saga arrived just after Amelia was diagnosed with Ataxia Telangiectasia and gave me the happiness, excitement and anticipation I so desperately needed.
A distraction and something to look forward to.
Something else to think about.
Something to talk to friends about.
I read all of the books (sometimes till 3am!) to escape my real world.
I even went to a midnight screening of one of the final novels (and woke up to take kids to school!).
Over the past 2 weeks Amelia has watched all of the movies.
We finished with the final one tonight.
Amelia has shown great interest and excitement at the end of each movie to watch the next one.
She has questioned the characters and the meanings behind storylines.
Everything I did.
The reason why I started purchasing the books (because they always hold so much more information).
Amelia is now researching audio books to hear The Twilight Saga.
I am so incredibly grateful and privileged to have been a part of this journey with her, that I myself took.
I feel like I have lived something with Amelia that always should have happened.
I won't possibly get to live most of life's journeys with her.
It sounds silly.
But I won't get to enjoy the first boyfriend, the first kiss, the first job, marriage etc..........
I got to see her excitement over something I also felt immensely about.
I love this kid immensely and will value whatever time and special experiences I get with her.
xxx
Hard to believe that it is August 2017 already.
The time seems to be passing by faster every year.
Amelia has entered a new stage of her growth and maturity that brings me to comment.
She is now more fragile and delicate in her emotional health.
I interpret this being hormonal (as she is now 14 years old) and battling mentally with her disease and development.
Recently in hospital, she hit me.
Amelia would be horrified to know that I mentioned this.
She is incredibly upset that it even happened.
BUT one test that the doctors wanted, required me to do it.
It was humiliating for her.
I have explained to her that she has no way of expressing her anger, frustration and humiliation.
I have explained that she has learnt from her mistake and it won't happen again.
The day after, I had quite a prominent scratch across my face.
It is kind of funny to be consoling the perpetrator, instead of the victim.
I hope that we have reassured Amelia enough to understand how she can expel this anger in the future.
--------------------------------------------------------------------------
Something that is always evident, is the usual right of passage for a mother and daughter.
I understand that Amelia and I spend an immense amount of time together and growth and development (because of her disability and disease) will never be equal to another 14 year old.
I personally only know this kind of situation with her now.
Unless she is at school, or one other persons house, it is our life.
Recently I introduced Amelia to a movie series that was unashamedly a massive part in my life a few years ago.
The Twilight Saga arrived just after Amelia was diagnosed with Ataxia Telangiectasia and gave me the happiness, excitement and anticipation I so desperately needed.
A distraction and something to look forward to.
Something else to think about.
Something to talk to friends about.
I read all of the books (sometimes till 3am!) to escape my real world.
I even went to a midnight screening of one of the final novels (and woke up to take kids to school!).
Over the past 2 weeks Amelia has watched all of the movies.
We finished with the final one tonight.
Amelia has shown great interest and excitement at the end of each movie to watch the next one.
She has questioned the characters and the meanings behind storylines.
Everything I did.
The reason why I started purchasing the books (because they always hold so much more information).
Amelia is now researching audio books to hear The Twilight Saga.
I am so incredibly grateful and privileged to have been a part of this journey with her, that I myself took.
I feel like I have lived something with Amelia that always should have happened.
I won't possibly get to live most of life's journeys with her.
It sounds silly.
But I won't get to enjoy the first boyfriend, the first kiss, the first job, marriage etc..........
I got to see her excitement over something I also felt immensely about.
I love this kid immensely and will value whatever time and special experiences I get with her.
xxx
Sunday 6 August 2017
Tom's support network
Hello....again!
I am feeling rather sentimental tonight.
Tom just played the final footy game for the 2017 season today and I have spent the entire afternoon feeling grateful for many reasons.
We have been fortunate enough to have people in Tom's life that may do things that we cannot.
Things that we cannot offer or have time for.
Today as we all wore yellow armbands and the team wore yellow face paint it reminded me of last year when the team supported Tom by doing the same in pink.
Two days before Amelia's big operation to remove the cancer tumour.
Today we did it for a players 8 year old cousin who has incurable leukemia.
Someone this child adores and has grown up with.
We were reminded that we are "family" and that we all support each other in hard times.
It was very emotional watching everyone band together for one players family.
I remember the tears from parents last year for us.
I have quite a significant "family" around Tom that comes from many directions.
Role models that he grows attached to and knows that they are always there.
People that know his situation, offer praise, constructive criticism and guidance in so many more ways than they probably even realise.
To Tom it is everything.
These people are showing support, love and mentoring in our world more than any of them realise.
(Even if their mum writes crazy stuff on here!).
These people are helping us guide Tom in a difficult world.
They make every week happy and full of excitement for Tom.
They make him think, question and plan.
They are helping to develop the adult he will be in the future.
They are all helping him to get through what may be considered a difficult childhood.
Thank you Megan, Dave, Glen, Brett (and all of the other helpers at footy that compliment, offer advice or encouragement and give him a pat on the back).
Kali, Darren (and all the parents at basketball that offer help and encouragement).
Tom's Primary School.
I would name them, but I am not allowed.
There are certain people that are amazing and look out for Tom and encourage a conversation when I suggest things are not going well at home.
Tom knows he can go to them and he feels safe emotionally at school.
Every time I witness any of the above, my heart grows with gratitude.
Sometimes it really does take a village to raise a child.
xxx
I am feeling rather sentimental tonight.
Tom just played the final footy game for the 2017 season today and I have spent the entire afternoon feeling grateful for many reasons.
We have been fortunate enough to have people in Tom's life that may do things that we cannot.
Things that we cannot offer or have time for.
Today as we all wore yellow armbands and the team wore yellow face paint it reminded me of last year when the team supported Tom by doing the same in pink.
Two days before Amelia's big operation to remove the cancer tumour.
Today we did it for a players 8 year old cousin who has incurable leukemia.
Someone this child adores and has grown up with.
We were reminded that we are "family" and that we all support each other in hard times.
It was very emotional watching everyone band together for one players family.
I remember the tears from parents last year for us.
I have quite a significant "family" around Tom that comes from many directions.
Role models that he grows attached to and knows that they are always there.
People that know his situation, offer praise, constructive criticism and guidance in so many more ways than they probably even realise.
To Tom it is everything.
These people are showing support, love and mentoring in our world more than any of them realise.
(Even if their mum writes crazy stuff on here!).
These people are helping us guide Tom in a difficult world.
They make every week happy and full of excitement for Tom.
They make him think, question and plan.
They are helping to develop the adult he will be in the future.
They are all helping him to get through what may be considered a difficult childhood.
Thank you Megan, Dave, Glen, Brett (and all of the other helpers at footy that compliment, offer advice or encouragement and give him a pat on the back).
Kali, Darren (and all the parents at basketball that offer help and encouragement).
Tom's Primary School.
I would name them, but I am not allowed.
There are certain people that are amazing and look out for Tom and encourage a conversation when I suggest things are not going well at home.
Tom knows he can go to them and he feels safe emotionally at school.
Every time I witness any of the above, my heart grows with gratitude.
Sometimes it really does take a village to raise a child.
xxx
Saturday 5 August 2017
Gastroparesis - digestive system shutdown
Hello dear friends,
After not having to attend hospital at all from 2011 - 2016, we have had to attend numerous times since June of last year with Amelia.
We seemed to have been dealing with the Ataxia Telangiectasia only, for a long time, and now many "side effects" of this disease are now appearing.
A degenerative disease means it only gets worse over time.
On my own personal journey, it appeared that I grieved for the child that I thought I had while accepting the one I do have, for a very long time.
Now we seem to be experiencing many of the complications that can occur with Ataxia Telangiectasia.
Recently her digestive system decided to stop working.
Amelia's stomach and bowel were full and were not moving along as normal.
She vomited regularly because there was nowhere for the food to go.
She did not want to eat, because she felt full as the stomach and bowel were not emptying.
I am grateful that the doctors are trialling medications to get it started again.
The general progression for an A-T child is to move to peg feeding (a tube of fluid/formula straight into the stomach).
It is a natural progression in this disease and is harmless.
BUT as has occurred with so many other children.....
She has had walking taken away.
Talking.
Feeding herself.
Toileting herself.
Showering herself.
Using a computer.
etc
I will try SO HARD to save the enjoyment and love of eating orally.
I cannot possibly describe the most favorite things in her life on 2 hands anymore.
Food is one of the five.
I know this is the progression of the disease and one step further to... lets not discuss it anymore.
But I just can't comprehend another step at this stage.
Saying that....
With Amelia doing a few hours back at school this week for the first time in many, many weeks, it has allowed me to analyse and process a plan to move forward.
We need to accept and understand that we will have regular hospital visits in the future.
We need to understand that the disease is progressing faster and at a different pace to others.
I need to understand and accept this.
I was prepared this time for hospital, and it made it all much easier for everyone.
It still does not make this whole horrible journey any easier, but at least everyone knows that the digestive system shutting down, is just another stage.
I would sacrifice myself to stop these stages from happening, but A-T does what it wants.
My personal journey recently has taught me that I do stupid things and offend regularly.
I am also learning to be weary of those that gossip and judge.
I do not have enough tears for those situations, let alone my own.
Please don't be offended if I do not make regular contact, I am going to be a turtle under its shell, or exhausted!
Just wanted to explain the recent crap.
xxx
After not having to attend hospital at all from 2011 - 2016, we have had to attend numerous times since June of last year with Amelia.
We seemed to have been dealing with the Ataxia Telangiectasia only, for a long time, and now many "side effects" of this disease are now appearing.
A degenerative disease means it only gets worse over time.
On my own personal journey, it appeared that I grieved for the child that I thought I had while accepting the one I do have, for a very long time.
Now we seem to be experiencing many of the complications that can occur with Ataxia Telangiectasia.
Recently her digestive system decided to stop working.
Amelia's stomach and bowel were full and were not moving along as normal.
She vomited regularly because there was nowhere for the food to go.
She did not want to eat, because she felt full as the stomach and bowel were not emptying.
I am grateful that the doctors are trialling medications to get it started again.
The general progression for an A-T child is to move to peg feeding (a tube of fluid/formula straight into the stomach).
It is a natural progression in this disease and is harmless.
BUT as has occurred with so many other children.....
She has had walking taken away.
Talking.
Feeding herself.
Toileting herself.
Showering herself.
Using a computer.
etc
I will try SO HARD to save the enjoyment and love of eating orally.
I cannot possibly describe the most favorite things in her life on 2 hands anymore.
Food is one of the five.
I know this is the progression of the disease and one step further to... lets not discuss it anymore.
But I just can't comprehend another step at this stage.
Saying that....
With Amelia doing a few hours back at school this week for the first time in many, many weeks, it has allowed me to analyse and process a plan to move forward.
We need to accept and understand that we will have regular hospital visits in the future.
We need to understand that the disease is progressing faster and at a different pace to others.
I need to understand and accept this.
I was prepared this time for hospital, and it made it all much easier for everyone.
It still does not make this whole horrible journey any easier, but at least everyone knows that the digestive system shutting down, is just another stage.
I would sacrifice myself to stop these stages from happening, but A-T does what it wants.
My personal journey recently has taught me that I do stupid things and offend regularly.
I am also learning to be weary of those that gossip and judge.
I do not have enough tears for those situations, let alone my own.
Please don't be offended if I do not make regular contact, I am going to be a turtle under its shell, or exhausted!
Just wanted to explain the recent crap.
xxx
Sunday 30 July 2017
Getting Back
Hello Friends,
I am happy.
I know this is a major shock after the previous blog.
It is difficult though being an advocate for a child that you could lose at any moment.
Medical professionals were not listening to my concerns and the concern of waiting for possible new cancer results did their toll on me.
The fact that a common cold can take her away has me always on high alert.
Amelia and I have not been separated for 7+ weeks.
I have caught her projectile vomit, cleaned it off her and the couch and in her very long hair everyday for 7+ weeks.
I have watched her eat only 2 mouthfuls of food every meal time or sipping on apple juice to keep her Type 1 Diabetes within a safe range.
I was beyond angry at the medical profession, for not helping me get her better again.
All my emails and phone calls were not returned.
Unfortunately the kids heard me call them names after one phone call.
They proceeded to tell Scott what F*#@ D%$#@! RCH were.
Oops.
Last week we arrived at emergency after 6 vomits in one day, and I finally felt like we were heard.
The doctors that we know so well, looked at Amelia lifeless on the bed, and me 100% exhausted on the seat next to her and finally told me they were going to help us.
We actually had the best stay in hospital yet.
I have also been more assertive and direct towards anyone in my entire lifetime.
"We are not leaving until you find an answer".
"What about this link and this suggestion".
"NO. You are not doing that to her".
Challenge (cancer organisation) and the nurses were all incredibly kind and nurturing.
Amelia was beyond AMAZING with testing that was humiliating and painful.
Scott and Tom and my dad went straight into "the routine".
We have left with a possible diagnosis of Gastroparesis.
I am yet to determine if it was caused by A-T degeneration, T1 diabetes diagnosis or flu and pneumoccal vaccines.
I am not anti vax AT ALL (children not getting these diseases keeps Amelia alive), but T1 and the vaccines occurred 1 week before the vomiting began.
But we have come home happy with a new regime that may be working.
Scott and Tom are happy.
We are possibly getting used to these separations.
Tonight I was nominated to take Tom to his Football awards night (Scott had already done the basketball and football game).
I normally stand in the corner alone in previous years, because I struggle to socialise and talk about anything other than Amelia's and Tom's health issues.
Tonight I did well.
I talked and listened.
I enjoyed being out.
I ventured over to people rather than wait for them to come to me.
It was 1 hour, but 1 hour where I pushed myself to try.
I was so proud to hear about Tom as a footy player but so much MORE proud to hear of him as a nice person on the field.
Helping players up that have fallen, patting team mates on the back and offering praise and where to stand.
(not so much kicking a player that had kicked his friend!).
They spoke like they knew him almost like I do.
These kids and players have been with him for years but I have never let the adults beyond my "guard".
Maybe next year I will attend the parent events more.
I need to get out and socialise more.
Someone very wise recently said "You are losing Amanda".
I realise I am. That is why I have become so weird lately.
I now realise how lost and absorbed I am in each child's health.
I actually do not have a life or an identity anymore.
I have to finish with something about our sweet Amelia though......
In the recent Pandora catalogue she found a charm (amongst 300+) that is a love heart.
Tonight she asked me if we can go and buy it.
It says "YOU ARE SO LOVED".
Thank you for making her feel that way.
xxx
I am happy.
I know this is a major shock after the previous blog.
It is difficult though being an advocate for a child that you could lose at any moment.
Medical professionals were not listening to my concerns and the concern of waiting for possible new cancer results did their toll on me.
The fact that a common cold can take her away has me always on high alert.
Amelia and I have not been separated for 7+ weeks.
I have caught her projectile vomit, cleaned it off her and the couch and in her very long hair everyday for 7+ weeks.
I have watched her eat only 2 mouthfuls of food every meal time or sipping on apple juice to keep her Type 1 Diabetes within a safe range.
I was beyond angry at the medical profession, for not helping me get her better again.
All my emails and phone calls were not returned.
Unfortunately the kids heard me call them names after one phone call.
They proceeded to tell Scott what F*#@ D%$#@! RCH were.
Oops.
Last week we arrived at emergency after 6 vomits in one day, and I finally felt like we were heard.
The doctors that we know so well, looked at Amelia lifeless on the bed, and me 100% exhausted on the seat next to her and finally told me they were going to help us.
We actually had the best stay in hospital yet.
I have also been more assertive and direct towards anyone in my entire lifetime.
"We are not leaving until you find an answer".
"What about this link and this suggestion".
"NO. You are not doing that to her".
Challenge (cancer organisation) and the nurses were all incredibly kind and nurturing.
Amelia was beyond AMAZING with testing that was humiliating and painful.
Scott and Tom and my dad went straight into "the routine".
We have left with a possible diagnosis of Gastroparesis.
I am yet to determine if it was caused by A-T degeneration, T1 diabetes diagnosis or flu and pneumoccal vaccines.
I am not anti vax AT ALL (children not getting these diseases keeps Amelia alive), but T1 and the vaccines occurred 1 week before the vomiting began.
But we have come home happy with a new regime that may be working.
Scott and Tom are happy.
We are possibly getting used to these separations.
Tonight I was nominated to take Tom to his Football awards night (Scott had already done the basketball and football game).
I normally stand in the corner alone in previous years, because I struggle to socialise and talk about anything other than Amelia's and Tom's health issues.
Tonight I did well.
I talked and listened.
I enjoyed being out.
I ventured over to people rather than wait for them to come to me.
It was 1 hour, but 1 hour where I pushed myself to try.
I was so proud to hear about Tom as a footy player but so much MORE proud to hear of him as a nice person on the field.
Helping players up that have fallen, patting team mates on the back and offering praise and where to stand.
(not so much kicking a player that had kicked his friend!).
They spoke like they knew him almost like I do.
These kids and players have been with him for years but I have never let the adults beyond my "guard".
Maybe next year I will attend the parent events more.
I need to get out and socialise more.
Someone very wise recently said "You are losing Amanda".
I realise I am. That is why I have become so weird lately.
I now realise how lost and absorbed I am in each child's health.
I actually do not have a life or an identity anymore.
I have to finish with something about our sweet Amelia though......
In the recent Pandora catalogue she found a charm (amongst 300+) that is a love heart.
Tonight she asked me if we can go and buy it.
It says "YOU ARE SO LOVED".
Thank you for making her feel that way.
xxx
Friday 21 July 2017
Hello Friends,
Scott has had to communicate the latest medical news on Amelia because I am not doing too well.
(on Amelia's project on Facebook).
I am tired, emotional and have extended many of my limits.
The last 6 weeks, the last 12 months, the last 6.5 years has taken me beyond anything I ever thought I was capable of.
I still doubt myself.
Keeping Amelia upbeat and comfortable without panicking is hard.
How any one person (and I know lots do!) can handle this kind of life, I take everything off to and congratulate you (and everyone knows I am a prude).
Amelia, Tom and Scott are my everything.
I really have no other life besides them.
BUT the battle to keep Amelia safe and alive is everything right now.
All of them has always been my everything.
I have so many things that I am questioning to the doctors regularly.......
The arguments, complaints, online studies and questions of investigations....
(recorded and documented)
Some have acknowledged that they have not thought of that.......
Or jumped to "I am so sorry. I will look into that".....
So many things that have been on the list since the beginning, 6 weeks ago.
Insulin for Type 1 was my first contact.
If it ends up being that for the nausea and vomiting, I may have to kill them.
I say that quite seriously.
The amount of trauma and stress Amelia has experienced, after they were the first dept asked.....
I am so mentally and physically exhausted that I feel like I am going insane.
Now we know that our beautiful Amelia has to endure another aneasthetic.
One where I have to once again hold her hand while she sobs and pleads for me to have it not happen again.......
ME. Only me.
No one experiences that with me.
NO ONE knows the pain and suffering on her PTSD and my heart when she BEGS for it to not happen again.
Especially when it brings no result.
No one knows the pain....
And yet, I and most importantly Amelia, will need to go through it again for the liver biopsy.
What if it is cancer?
It is just not fair.
Our life is fucked and I wish that I and more importantly Amelia had NEVER experienced this pain.
God does not exist if he delivers this kind of pain and suffering.
I probably will not update for a while.
Sick of reporting sad stuff.
I am over it.
xxx
Scott has had to communicate the latest medical news on Amelia because I am not doing too well.
(on Amelia's project on Facebook).
I am tired, emotional and have extended many of my limits.
The last 6 weeks, the last 12 months, the last 6.5 years has taken me beyond anything I ever thought I was capable of.
I still doubt myself.
Keeping Amelia upbeat and comfortable without panicking is hard.
How any one person (and I know lots do!) can handle this kind of life, I take everything off to and congratulate you (and everyone knows I am a prude).
Amelia, Tom and Scott are my everything.
I really have no other life besides them.
BUT the battle to keep Amelia safe and alive is everything right now.
All of them has always been my everything.
I have so many things that I am questioning to the doctors regularly.......
The arguments, complaints, online studies and questions of investigations....
(recorded and documented)
Some have acknowledged that they have not thought of that.......
Or jumped to "I am so sorry. I will look into that".....
So many things that have been on the list since the beginning, 6 weeks ago.
Insulin for Type 1 was my first contact.
If it ends up being that for the nausea and vomiting, I may have to kill them.
I say that quite seriously.
The amount of trauma and stress Amelia has experienced, after they were the first dept asked.....
I am so mentally and physically exhausted that I feel like I am going insane.
Now we know that our beautiful Amelia has to endure another aneasthetic.
One where I have to once again hold her hand while she sobs and pleads for me to have it not happen again.......
ME. Only me.
No one experiences that with me.
NO ONE knows the pain and suffering on her PTSD and my heart when she BEGS for it to not happen again.
Especially when it brings no result.
No one knows the pain....
And yet, I and most importantly Amelia, will need to go through it again for the liver biopsy.
What if it is cancer?
It is just not fair.
Our life is fucked and I wish that I and more importantly Amelia had NEVER experienced this pain.
God does not exist if he delivers this kind of pain and suffering.
I probably will not update for a while.
Sick of reporting sad stuff.
I am over it.
xxx
Sunday 16 July 2017
Dear Friends,
My recent posts have been extremely emotional and negative.
It is difficult when the mother is writing.
It is hard not to focus on my own personal emotions, especially when Amelia rarely leaves my side and Tom is never far from me or my thoughts,
Tonight I will write about my amazing children......
Amelia has a smile that always lights up an entire room.
When she laughs, like REALLY, really laughs, it is so contagious that the whole room loses it.
It is one of those laughs where she struggles to breath and no sound comes out.
It is the happiest thing that you could ever, ever see.
I do not recall EVER seeing someone in such a happy state of mind.
If you have been fortunate enough to see it, you will understand what I am talking about.
Amelia can sometimes have the quickest wit in her "one line comments" that it can do the similar....
except the whole room is encased in uncontrollable laughter.
It can be so unpredictable and people have no warning, it can literally blindside you.
I have said many times....
People look at me and say "Did she just say what I think she said?!"
Amelia's empathy is the biggest thing taught.
People and animals.
She reminds you of feelings and lives.
Her sympathy, empathy and compassion is overwhelming.
With everything she travels through, she is always thinking and asking about others.
But in everyday life, with all of this known, we try to stay upbeat and busy.
Shopping, visiting and conversations.
Conversations can be indepth, but we have now moved on from honesty to optimism.
But she is too clever.
She always corrects us and points out the obvious.
Tom is an interesting and technical character.
After living with this for so long, we try to keep up with his current state of mind, but it is difficult.
Tom overwhelmingly adores his sister, worries about his father and I emotionally.
("Do you need a hug mum?" is a daily occurance)
He is a perfectionist with school work and stress of high grades (TOTALLY NOT brought on by us).
Tom is 11.
He wants to be a kid.
He wants to play sport, play with his friends, get out of the house and interact with people.
He knows that he adores Amelia and wants to be part of everything in our family.
Yesterday as Amelia began projectile vomiting with our latest concern, he went out the back and played basketball.
It was the first time it was really apparent that he was ignoring the current situation.
So many times recently, he grabbed the bucket when Scott and I were not nearby.
I walked in to him rubbing her head and consoling her.
Yesterday he showed it is becoming too much.
Yesterday I told Scott we should have had another child for Tom when we had the chance.
I am really regretting not giving Tom a lifelong sibling at this stage.
He will need someone in the future years.
BUT, BUT, BUT,
This post is not about me and my stupid negative thoughts.
This post is about the fact that I gave grown in my belly and given birth to 2 amazing kids that have provided so many with so much thinking on "LIFE".
Recently we meant people that said "We have been reading your blog".
"She is NOT crazy" Scott said pointing at me.
He was only responding to what people may and do think.
I do not have the strength in this battle I have been dealt, but I will find it and will deal it appropriately.
He was speaking about my writings and my inner most thoughts.
Amelia and Tom are amazing on their own.
They will always show their own selves and proves the amazing people they are.
xxx
My recent posts have been extremely emotional and negative.
It is difficult when the mother is writing.
It is hard not to focus on my own personal emotions, especially when Amelia rarely leaves my side and Tom is never far from me or my thoughts,
Tonight I will write about my amazing children......
Amelia has a smile that always lights up an entire room.
When she laughs, like REALLY, really laughs, it is so contagious that the whole room loses it.
It is one of those laughs where she struggles to breath and no sound comes out.
It is the happiest thing that you could ever, ever see.
I do not recall EVER seeing someone in such a happy state of mind.
If you have been fortunate enough to see it, you will understand what I am talking about.
Amelia can sometimes have the quickest wit in her "one line comments" that it can do the similar....
except the whole room is encased in uncontrollable laughter.
It can be so unpredictable and people have no warning, it can literally blindside you.
I have said many times....
People look at me and say "Did she just say what I think she said?!"
Amelia's empathy is the biggest thing taught.
People and animals.
She reminds you of feelings and lives.
Her sympathy, empathy and compassion is overwhelming.
With everything she travels through, she is always thinking and asking about others.
But in everyday life, with all of this known, we try to stay upbeat and busy.
Shopping, visiting and conversations.
Conversations can be indepth, but we have now moved on from honesty to optimism.
But she is too clever.
She always corrects us and points out the obvious.
Tom is an interesting and technical character.
After living with this for so long, we try to keep up with his current state of mind, but it is difficult.
Tom overwhelmingly adores his sister, worries about his father and I emotionally.
("Do you need a hug mum?" is a daily occurance)
He is a perfectionist with school work and stress of high grades (TOTALLY NOT brought on by us).
Tom is 11.
He wants to be a kid.
He wants to play sport, play with his friends, get out of the house and interact with people.
He knows that he adores Amelia and wants to be part of everything in our family.
Yesterday as Amelia began projectile vomiting with our latest concern, he went out the back and played basketball.
It was the first time it was really apparent that he was ignoring the current situation.
So many times recently, he grabbed the bucket when Scott and I were not nearby.
I walked in to him rubbing her head and consoling her.
Yesterday he showed it is becoming too much.
Yesterday I told Scott we should have had another child for Tom when we had the chance.
I am really regretting not giving Tom a lifelong sibling at this stage.
He will need someone in the future years.
BUT, BUT, BUT,
This post is not about me and my stupid negative thoughts.
This post is about the fact that I gave grown in my belly and given birth to 2 amazing kids that have provided so many with so much thinking on "LIFE".
Recently we meant people that said "We have been reading your blog".
"She is NOT crazy" Scott said pointing at me.
He was only responding to what people may and do think.
I do not have the strength in this battle I have been dealt, but I will find it and will deal it appropriately.
He was speaking about my writings and my inner most thoughts.
Amelia and Tom are amazing on their own.
They will always show their own selves and proves the amazing people they are.
xxx
Thursday 13 July 2017
Dear Friends,
I am sorry.
I am so, so sorry.
We have experienced so much recently that I know many of you do not know what this life is like, it is probably so negative and overwhelming it is too much to cope with.
I understand that and know everything is relative to each other.
But our and my life can be so too much for others.
Amelia was recently diagnosed with Type 1 Diabetes (on top of Ataxia Telangiectasia and Ovarian Cancer).
For us it has appeared to be not too dramatic due to our son being type 1 already.
Amelia has been an absolute trooper in her management of needles and carbohydrate counting.
Unfortunately she began her morning nausea and vomiting shortly after the Type 1 diagnosis.
Unfortunately for us, this was our only symptom of cancer in her body.
Cancer growing for 2 years for Ovarian cancer in June of last year.
I tried to eliminate new medications as the cause while also notifying the hospital of what was occurring and what I was trying to correct.
Another note about why I can no longer work and we are now registered as "low income".
(This is something that Scott and I never realised would occur with our qualifications).
I am always keeping note of the impression of me as the direct advocate.
It is sad, but the medical professionals always believe their immediate impression is right and the parents are not correct.
I know this is incredibly judgemental on their behalf, but in our case it is always correct.
Amelia has experienced vomiting and nausea for approximately 5 weeks now.
It is generally of a morning, but can continue.
Of stuff it.....
Here is my complaint to the hospital......
...............................
I have requested that our previous consultant and oncologist be kept away from me from now on. They have not responded to any pleas for help from me in the last few weeks.
If any new cancer is found I will find them though......
-----------------------
Today we were told we have all new specialists.
They all believe there may be cancer hiding somewhere in Amelia's body.
I am relieved and heartbroken.
--------------------------
Anyone that knows me knows that I do not like to cause trouble.
To hear that all the new specialists believe there may be cancer "hiding" is heartbreaking even though they are finally listening.
-----------------------------
Once again I am questioning why I have been chosen to be this amazing child's mother.
Why am I chosen to be her advocate?
How do I, with so many faults, qualify?!
Amelia asked to listen to this song at bedtime.
She will always be my guiding light.
I may not be the amazing mother that deserved her.....
But I will continue trying to learn and advocate.....
https://youtu.be/slotyA4opnM
Much love to you all.
xxx
I am sorry.
I am so, so sorry.
We have experienced so much recently that I know many of you do not know what this life is like, it is probably so negative and overwhelming it is too much to cope with.
I understand that and know everything is relative to each other.
But our and my life can be so too much for others.
Amelia was recently diagnosed with Type 1 Diabetes (on top of Ataxia Telangiectasia and Ovarian Cancer).
For us it has appeared to be not too dramatic due to our son being type 1 already.
Amelia has been an absolute trooper in her management of needles and carbohydrate counting.
Unfortunately she began her morning nausea and vomiting shortly after the Type 1 diagnosis.
Unfortunately for us, this was our only symptom of cancer in her body.
Cancer growing for 2 years for Ovarian cancer in June of last year.
I tried to eliminate new medications as the cause while also notifying the hospital of what was occurring and what I was trying to correct.
Another note about why I can no longer work and we are now registered as "low income".
(This is something that Scott and I never realised would occur with our qualifications).
I am always keeping note of the impression of me as the direct advocate.
It is sad, but the medical professionals always believe their immediate impression is right and the parents are not correct.
I know this is incredibly judgemental on their behalf, but in our case it is always correct.
Amelia has experienced vomiting and nausea for approximately 5 weeks now.
It is generally of a morning, but can continue.
Of stuff it.....
Here is my complaint to the hospital......
My daughter has been a patient at the hospital since 2006.
She was misdiagnosed with mild cerebral palsy in 2007.
After numerous appointments with both............I arrived for an appointment in 2010 explaining that she was getting worse.
After a short stay, Amelia was diagnosed with Ataxia Telangiectasia.
I have many comments about how that diagnosis was interpreted to us as the parents.
Jump to 2016, after once again many appointments, the 2 years of morning vomiting turned to severe abdominal pain and loss of appetite.
Suddenly it was a mass emergency with a 14cm mass in her abdomen (full of 1 litre of fluid) that turned out to be a malignant tumour.
How this went unnoticed when I had regularly expressed my concern about her regular vomiting, I have no idea.
We are very lucky that it stayed contained rather than spread to her chest and brain as a malignant germ cell tumour should have.
You have already addressed and apologised for our treatment during our 3 week stay in June 2016.
The lack of "cancer support" group services and no after home care was extremely distressing.
Amelia's PTSD was also very upsetting for 4 months.
Amelia has since recorded high liver blood levels (in the 500's when it should be 40)
that is apparent in blood tests since August of last year.
Very upsetting that no one red flagged that.
My local GP noticed a recent one and upon reading previous blood tests it is easy to see the huge climb.
How did you not notice this?
How did her main medical teams at RCH (the ones doing the blood tests) not notice this previously?
In May, Amelia was diagnosed with Type 1 Diabetes and placed on Daily Insulin.
Amelia has now been vomiting and experiencing nausea for 5 weeks.
It is mostly mornings, but sometimes continues throughout the day.
Initially I tried to eliminate new medications.
I contacted RCH( ........ was the consultant while our new doctor was on leave) expressing my concern with the vomiting and loss of appetite.
He told me he would speak to Oncology and get back to me.
After not hearing from him, we arrived at emergency, 6 days later, where the doctor wanted an immediate MRI of the brain.
We waited 2 more days where doctors and nurses witnessed Amelia vomiting and her very small amount of eating.
A urine sample was ordered that sat in the bathroom for 5 hours (after telling staff it was there).
It was clear of infection.
We were sent home to come back in 2 days for an MRI under aneasthetic.
The MRI scan was supposedly clear of any abnormalities.
In recovery we were told that the doctors in....... would meet together with oncology to work out a plan.
For the past 5 days, Amelia has experienced nausea and vomiting regularly. I have had to reduce her insulin doses dramatically due to barely eating and am treating her diabetic lows daily.
I have emailed our doctor at ....... on Monday morning as well as this morning communicating that the symptoms are still occurring.
I also let them know that I needed another script for anti nausea medication.
Today a nurse rang from dev med to ask "how Amelia is going?".
I apologise for the aggressive response.
She knew nothing about a supposed meeting to work out a plan.
A second phone call from the nurse said our doctor would like a urine sample and they will call me next week.
I have lost all confidence in this department and their capability in keeping our daughter safe medically.
Amelia is laying on the couch daily (which she never does!) pleading with me to take her back to hospital, a place that she normally experiences severe anxiety about going to.
A plan needs to be formulated to work out why she is this way and at the moment I feel we are not being acknowledged or helped in improving Amelia's current condition.
...............................
I have requested that our previous consultant and oncologist be kept away from me from now on. They have not responded to any pleas for help from me in the last few weeks.
If any new cancer is found I will find them though......
-----------------------
Today we were told we have all new specialists.
They all believe there may be cancer hiding somewhere in Amelia's body.
I am relieved and heartbroken.
--------------------------
Anyone that knows me knows that I do not like to cause trouble.
To hear that all the new specialists believe there may be cancer "hiding" is heartbreaking even though they are finally listening.
-----------------------------
Once again I am questioning why I have been chosen to be this amazing child's mother.
Why am I chosen to be her advocate?
How do I, with so many faults, qualify?!
Amelia asked to listen to this song at bedtime.
She will always be my guiding light.
I may not be the amazing mother that deserved her.....
But I will continue trying to learn and advocate.....
https://youtu.be/slotyA4opnM
Much love to you all.
xxx
Wednesday 5 July 2017
Hello long term friends,
The last 4 weeks have been stressful.
Amelia began the morning vomiting again 4 weeks ago.
Many would remember that it occurred for 2 years before the ovarian cancer was discovered.
TWO YEARS beforehand!!!!
To everyone in our house it will always be a reminder as the only cancer symptom.
I decided over the last few weeks to be realistic.
Many know that I try to avoid being the over neurotic parent at RCH.
I also do not want to stress Amelia and Tom out unnecessarily.
Scott and I looked at new medications and possible scenario's that could be the cause.
We eliminated and documented possible causes and when nausea and vomit occurred.
(No mention to Tom)
Each vomit, I would say "One more time" about taking her to emergency.
Every family member mumbled "It is just like the cancer again".
I rang the hospital repeatedly in the third week and was always told "Leave it with me. We will get back to you".
As we began the fourth week, no one had returned any of my calls, so I packed a bag and headed to emergency.
After so many days of thinking.....
Remembering the post ovarian diagnosis.....
Remembering the "It should have and could have spread to the chest and the brain"....
"It still may appear. This cancer can just appear in the chest or brain".......
The "we will monitor the chest, brain, abdomen and pelvic area consistently"......
The brain has never been checked post operation.
Everything else is checked every 3 months.
The current symptoms are showing cancer is somewhere.......maybe.........
I watched the emergency doctor examine her.
I purposely chose not to mention much.
I wanted to eliminate the "neurotic mother" thoughts I was personally experiencing.
Suddenly she was trying to organise an immediate MRI of the brain on a Monday night.
My concerns had been confirmed.
Our main department for "rare diseases and conditions" became involved and witnessed Amelia vomiting early the next morning and also began pushing for a brain MRI.
For the first time they listened to me and documented my concern's.
Those concerns are now probably listed right next to all my concerns in the past 11 years.
The ones where I really wished I wasn't right.
We waited and waited for that so called "emergency MRI".
Amelia was nauseous and tired and pale repeatedly in the following two days, but I could not be any prouder of her resilience and coping mechanisms.
Amelia has been AMAZING.
We have both coped SO well.
The both of us.
Totally NOT like last year.
So many positives and laughs.
SO many competitions for the better laugh.
Amelia has told staff off for not following the correct procedure....
"You didn't scan my wrist band before doing my obs"......repeatedly!
We demanded to see the staff members she adores that put a smile on her face (and they came and they did!).
Amelia is now part of so many departments she is like a regular now!
They took her regular tablet medications off us due to protocol.
When they wanted her Insulin, I fought it.
They take at least an hour (due to 2 nurses to 12 patients) to get it to us.
Her food is cold and she is distressed from being starving by the time they bring it.
(Insulin before food).
I won and it never left us.
She has been nauseous and vomiting for 3 weeks, but now she came to her own conclusion of what the MRI was for.
"Are they looking for cancer in my brain?"
"Am I going to die?"
"Why are my friends all at Monash? and I am here? Do they not like me now?".
Friends are SO important in times like this.
I had no response.
Our beautiful BJ died almost a year ago from brain cancer and it will always be on her mind.
This is a child (my child) that returned from hospital cancer free to then learn BJ had passed away.
She has always felt so guilty that he did not survive and now they are looking for something similar in her.
Tonight a massive family discussion occurred on the spur of the moment.
Tom returned from a playdate to find us home and was very distant.
He suddenly burst into tears for no apparent reason.
We "opened up the floor" to why we had been away and what the scan will be for.
Amelia and I had already discussed that Tom may have placed a "protective guard" up for the hurt of last year, due to our discussions on facetime the day before.
He appeared to know and wanted to know nothing.
Amelia contained her fear and continued to show resilience by explaining to Tom that there may be cancer in her brain and that will be really scary.
I was amazed at how she handled the discussion.
She JUST WANTED him to be ok she said later.
As his emotions flowed and Amelia showed amazing resilience, we assured them both, it will probably be nothing to do with cancer.
The love and affection and openness tonight will stay with me forever.
Amelia sat there in silence while possible cancer in her brain was discussed and said
"Tom please talk to me about it. I will answer and talk".
We said to them both that everyone in this room is the immediate.
TALK.
DISCUSS.
HUG.
CRY.
No explanation needed.
(we may have mentioned a few others to ask for honesty).
BUT
If there is cancer detected in the coming weeks, heads will roll.
LITERALLY.
Our Oncology doctor is fighting Amelia's symptoms and this brain scan.
He does not feel it is needed.
Thankfully our original team (that missed the ovarian cancer) is pushing for it.
I have also made it clear that an MRI SHOULD have been booked for the chest, abdomen and pelvic area.
Oncology were never happy with an ultrasound or xray for those areas because of the radiation for her Ataxia Telengiectasia.
They will only approve the brain after being pushed.
(MRI will not affect her A-T. They should just approve it).
I have made it TOTALLY clear today at the hospital of the mistakes made in the past and what I feel right now.
SHE WILL NOT DIE UNDER ME.
Sorry but that is how I feel right now.
Oncology have not responded my calls or emails.
They will not accept her symptoms within hospital.
Today I was told that the oncology department does not believe it is cancer again.
If it is, his head will f"n roll.
I REPEAT F'N ROLL.
If it is anywhere, they have failed.
Amelia is living on anti-nausea meds.....
To us it is a symptom.
SHE WILL NOT DIE ON MY F'N WATCH.
I have been given the roll of full time carer on no pay.
THIS IS MY JOB.
Fingers crossed for Friday.
But then I will continue for other areas.
It is somewhere.
xxx
The last 4 weeks have been stressful.
Amelia began the morning vomiting again 4 weeks ago.
Many would remember that it occurred for 2 years before the ovarian cancer was discovered.
TWO YEARS beforehand!!!!
To everyone in our house it will always be a reminder as the only cancer symptom.
I decided over the last few weeks to be realistic.
Many know that I try to avoid being the over neurotic parent at RCH.
I also do not want to stress Amelia and Tom out unnecessarily.
Scott and I looked at new medications and possible scenario's that could be the cause.
We eliminated and documented possible causes and when nausea and vomit occurred.
(No mention to Tom)
Each vomit, I would say "One more time" about taking her to emergency.
Every family member mumbled "It is just like the cancer again".
I rang the hospital repeatedly in the third week and was always told "Leave it with me. We will get back to you".
As we began the fourth week, no one had returned any of my calls, so I packed a bag and headed to emergency.
After so many days of thinking.....
Remembering the post ovarian diagnosis.....
Remembering the "It should have and could have spread to the chest and the brain"....
"It still may appear. This cancer can just appear in the chest or brain".......
The "we will monitor the chest, brain, abdomen and pelvic area consistently"......
The brain has never been checked post operation.
Everything else is checked every 3 months.
The current symptoms are showing cancer is somewhere.......maybe.........
I watched the emergency doctor examine her.
I purposely chose not to mention much.
I wanted to eliminate the "neurotic mother" thoughts I was personally experiencing.
Suddenly she was trying to organise an immediate MRI of the brain on a Monday night.
My concerns had been confirmed.
Our main department for "rare diseases and conditions" became involved and witnessed Amelia vomiting early the next morning and also began pushing for a brain MRI.
For the first time they listened to me and documented my concern's.
Those concerns are now probably listed right next to all my concerns in the past 11 years.
The ones where I really wished I wasn't right.
We waited and waited for that so called "emergency MRI".
Amelia was nauseous and tired and pale repeatedly in the following two days, but I could not be any prouder of her resilience and coping mechanisms.
Amelia has been AMAZING.
We have both coped SO well.
The both of us.
Totally NOT like last year.
So many positives and laughs.
SO many competitions for the better laugh.
Amelia has told staff off for not following the correct procedure....
"You didn't scan my wrist band before doing my obs"......repeatedly!
We demanded to see the staff members she adores that put a smile on her face (and they came and they did!).
Amelia is now part of so many departments she is like a regular now!
They took her regular tablet medications off us due to protocol.
When they wanted her Insulin, I fought it.
They take at least an hour (due to 2 nurses to 12 patients) to get it to us.
Her food is cold and she is distressed from being starving by the time they bring it.
(Insulin before food).
I won and it never left us.
She has been nauseous and vomiting for 3 weeks, but now she came to her own conclusion of what the MRI was for.
"Are they looking for cancer in my brain?"
"Am I going to die?"
"Why are my friends all at Monash? and I am here? Do they not like me now?".
Friends are SO important in times like this.
I had no response.
Our beautiful BJ died almost a year ago from brain cancer and it will always be on her mind.
This is a child (my child) that returned from hospital cancer free to then learn BJ had passed away.
She has always felt so guilty that he did not survive and now they are looking for something similar in her.
Tonight a massive family discussion occurred on the spur of the moment.
Tom returned from a playdate to find us home and was very distant.
He suddenly burst into tears for no apparent reason.
We "opened up the floor" to why we had been away and what the scan will be for.
Amelia and I had already discussed that Tom may have placed a "protective guard" up for the hurt of last year, due to our discussions on facetime the day before.
He appeared to know and wanted to know nothing.
Amelia contained her fear and continued to show resilience by explaining to Tom that there may be cancer in her brain and that will be really scary.
I was amazed at how she handled the discussion.
She JUST WANTED him to be ok she said later.
As his emotions flowed and Amelia showed amazing resilience, we assured them both, it will probably be nothing to do with cancer.
The love and affection and openness tonight will stay with me forever.
Amelia sat there in silence while possible cancer in her brain was discussed and said
"Tom please talk to me about it. I will answer and talk".
We said to them both that everyone in this room is the immediate.
TALK.
DISCUSS.
HUG.
CRY.
No explanation needed.
(we may have mentioned a few others to ask for honesty).
BUT
If there is cancer detected in the coming weeks, heads will roll.
LITERALLY.
Our Oncology doctor is fighting Amelia's symptoms and this brain scan.
He does not feel it is needed.
Thankfully our original team (that missed the ovarian cancer) is pushing for it.
I have also made it clear that an MRI SHOULD have been booked for the chest, abdomen and pelvic area.
Oncology were never happy with an ultrasound or xray for those areas because of the radiation for her Ataxia Telengiectasia.
They will only approve the brain after being pushed.
(MRI will not affect her A-T. They should just approve it).
I have made it TOTALLY clear today at the hospital of the mistakes made in the past and what I feel right now.
SHE WILL NOT DIE UNDER ME.
Sorry but that is how I feel right now.
Oncology have not responded my calls or emails.
They will not accept her symptoms within hospital.
Today I was told that the oncology department does not believe it is cancer again.
If it is, his head will f"n roll.
I REPEAT F'N ROLL.
If it is anywhere, they have failed.
Amelia is living on anti-nausea meds.....
To us it is a symptom.
SHE WILL NOT DIE ON MY F'N WATCH.
I have been given the roll of full time carer on no pay.
THIS IS MY JOB.
Fingers crossed for Friday.
But then I will continue for other areas.
It is somewhere.
xxx
Wednesday 31 May 2017
THAT performance
Hello dear friends,
I have hassled you a lot recently about Amelia and her choice for the "Talent Show" at school camp.
I feel I need to explain why it has meant so much and been such an emotional event for many close to Amelia.
The words in the song are pleading for guidance.
The words are Amelia pleading for explanation and help to navigate this life she has been dealt
(We have discussed this).
Amelia has steadily increased in anxiety in recent years and never likes to be "centre of attention".
(Why is everyone staring at me?)
Amelia does not like to inconvenience people.
(I need a drink of water, but everyone looks really busy).
She does not like to speak up when she is uncomfortable or unhappy
(It will make them sad or angry).
She has been through SO much in her short life that has frightened her and made her question the quality and unfairness of her own existence
(once again we have discussed this).
This song AND this performance was so much more than a child singing on a microphone.
It was someone standing up to their anxiety to communicate a very personal feeling to some of those that she loves dearly.
It was a little girl saying "Why?"
"Am I doing this right?"
"You are holding my hand"
"I am a survivor".
A little girl pleading to know about her own life and why it is the way it is.
This song has helped her come out the other side of A-T, Ovarian cancer, Type 1 Diabetes and severe anxiety.
Today as staff members tried to convey the emotion in the room, after knowing Amelia for 5+ years, it made me so proud.
To have one staff member, who we all adore greatly, have to leave the room to sob........
This is massive.
I regularly question my ability to be her mother.
Today I was proud to know that I am.
xxx
https://www.facebook.com/groups/ameliasproject/
I have hassled you a lot recently about Amelia and her choice for the "Talent Show" at school camp.
I feel I need to explain why it has meant so much and been such an emotional event for many close to Amelia.
The words in the song are pleading for guidance.
The words are Amelia pleading for explanation and help to navigate this life she has been dealt
(We have discussed this).
Amelia has steadily increased in anxiety in recent years and never likes to be "centre of attention".
(Why is everyone staring at me?)
Amelia does not like to inconvenience people.
(I need a drink of water, but everyone looks really busy).
She does not like to speak up when she is uncomfortable or unhappy
(It will make them sad or angry).
She has been through SO much in her short life that has frightened her and made her question the quality and unfairness of her own existence
(once again we have discussed this).
This song AND this performance was so much more than a child singing on a microphone.
It was someone standing up to their anxiety to communicate a very personal feeling to some of those that she loves dearly.
It was a little girl saying "Why?"
"Am I doing this right?"
"You are holding my hand"
"I am a survivor".
A little girl pleading to know about her own life and why it is the way it is.
This song has helped her come out the other side of A-T, Ovarian cancer, Type 1 Diabetes and severe anxiety.
Today as staff members tried to convey the emotion in the room, after knowing Amelia for 5+ years, it made me so proud.
To have one staff member, who we all adore greatly, have to leave the room to sob........
This is massive.
I regularly question my ability to be her mother.
Today I was proud to know that I am.
xxx
https://www.facebook.com/groups/ameliasproject/
Thursday 25 May 2017
May 25th 2017
Hello tolerant friends,
So busy here now with needles, finger pricks and carbohydrate counting for two totally different kids.
The effort to keep both kids within a "safe range" is very tiring!
My role as a carer seems to have been taken to a whole new level.
Toileting, dressing, feeding, daily school phone calls, hospital phone calls and my most important role......the emotional health of each child.
Amelia has taken to diabetes in a way that I could never have predicted.
There has never been any tears and she questions her carb intake for every meal.
She requests to know her BSL level and check the insulin dose every single time.
She is asking for full knowledge and as much control as her body allows.
-------------------------------------------------------------------------------------
Last night we were lucky enough to go out for tea.
Tom has always demanded to go out to the car to do his needle, when his food has arrived, due to noise, distraction and people watching.
Last night as we were traveling in the car, Amelia asked him to "conquer his fear" and just do it at the table with her.
(She may have also said "don't be a scaredy cat and suck it up")
As we sat at the table, Tom quietly did his finger prick and needle.
I was SO proud of him and have thanked Amelia today for encouraging him.
----------------------------------------------------------------------------------------
Today I have received a rather important phone call about Amelia's medical care.
I cannot speak too much about it, but I have been asked to a meeting to address indescrepencies in previous years.
Advocacy for Amelia's care has become quite serious recently and I have been asked to document and present these issues in where issues were ignored or overlooked and we could have possibly lost her prematurely.
It will be presented to possibly influential people.
Quite big, but I will continue my study of blood test etc.
--------------------------------------------------------------------------------------------
I also have some exciting news..........
Recently I wrote about the ridiculously high prices associated with disability.
The humiliation of approaching charities and organisations to assist with funding for wheelchairs, shower chairs and the like.
Families that already exist on low wages due to the stress and demand of this kind of life.....
I have had a quote for a new manual wheelchair for Amelia since LAST September.
Almost $9,000.
A chair fitted to her inability to keep her head up now, sit without sliding to either side, sit with her legs and feet in a 90 degree angle and sit for hours on end without getting back and buttock (Amelia and Tom would say BUM! and laugh) pain.
After numerous places denied funding, I wrote a blog on here explaining another part of life for a family that has a child with a disability.
The humiliation and pride that diminishes for the parents that cannot provide for their own child.....
Someone that reads this blog contacted a friend.
That friend rang me directly.
They said "I have been sent a link to your blog. We will fund it for your daughter".
I am now able to say that all the paperwork is completed, (Amelia being in hospital put a delay on it), but the manual wheelchair has been ordered!
The person on here AND the organisation would prefer to stay anonymous, but the amount of appreciation and love we have for these people is beyond anything we could describe.
Amelia will soon be sitting in a chair that will not be creating the new diagnosis of scoliosis to get worse.
------------------------------------------------------------------------------------
Recently Amelia announced that if Bruno Mars and/or Ed Sheeran were to ever have concerts in Melbourne, she would like to push through her fear of crowds and loud noises to attend.
Of course both had to go on sale within weeks of each other after she spoke!!!!
Bruno Mars went on sale and an awesome friend helped me sit on hold for 1 hour (because I was driving to a prebooked luncheon with Challenge!) before we finally got tickets.
Ed Sheeran goes on sale for 4 days later and my brother and I sit on hold for 3.5 hours to get tickets.
We are all separated, but we can work with that.
ALL Christmas and Birthday presents are now done from close family members for the next 12 months!!!!
Amelia then announces that she may like to finally use her "Make a Wish" to request to meet him.
HUGE!
This is still undecided.
-------------------------------------------------------------------------------------------
Finally, next week, Amelia goes on school camp.
She is incredibly anxious because of the new diabetes diagnosis.
She has not experienced "a low" yet and none of us can convince her that she will not end up in a coma if her level drops lower than normal.
Tom has tried his absolute best to convince her she will "feel it" before it gets to that stage.
The ratio of insulin needles to carbohydrate intake is difficult though.
Amelia is analysing EVERYTHING about this camp.
We have reassured her about phone calls, meetings with the school and us being only 20 minutes away.
Nothing is helping.
But tonight she blew Scott and I away.
She pointed at the Itinerary for the camp.
"Talent Show".
She said "I want to sing a song by myself".
Scott and I instantly think of her anxiety and hate of being "centre of attention".
I want to sing "Dear Life" by Delta Goodrem.
"Can I practice in front of you?"
Please take the time to listen to the words below.
Please imagine what they may mean to a 13 year old that has been through as much as Amelia has been through.
Tonight Scott and I crumbled while wondering where and how this child has been created.
She sends so many messages and communicates so much that is beyond what she appears to be........
https://www.youtube.com/watch?v=9wPnGY5PlZY
xxx
So busy here now with needles, finger pricks and carbohydrate counting for two totally different kids.
The effort to keep both kids within a "safe range" is very tiring!
My role as a carer seems to have been taken to a whole new level.
Toileting, dressing, feeding, daily school phone calls, hospital phone calls and my most important role......the emotional health of each child.
Amelia has taken to diabetes in a way that I could never have predicted.
There has never been any tears and she questions her carb intake for every meal.
She requests to know her BSL level and check the insulin dose every single time.
She is asking for full knowledge and as much control as her body allows.
-------------------------------------------------------------------------------------
Last night we were lucky enough to go out for tea.
Tom has always demanded to go out to the car to do his needle, when his food has arrived, due to noise, distraction and people watching.
Last night as we were traveling in the car, Amelia asked him to "conquer his fear" and just do it at the table with her.
(She may have also said "don't be a scaredy cat and suck it up")
As we sat at the table, Tom quietly did his finger prick and needle.
I was SO proud of him and have thanked Amelia today for encouraging him.
----------------------------------------------------------------------------------------
Today I have received a rather important phone call about Amelia's medical care.
I cannot speak too much about it, but I have been asked to a meeting to address indescrepencies in previous years.
Advocacy for Amelia's care has become quite serious recently and I have been asked to document and present these issues in where issues were ignored or overlooked and we could have possibly lost her prematurely.
It will be presented to possibly influential people.
Quite big, but I will continue my study of blood test etc.
--------------------------------------------------------------------------------------------
I also have some exciting news..........
Recently I wrote about the ridiculously high prices associated with disability.
The humiliation of approaching charities and organisations to assist with funding for wheelchairs, shower chairs and the like.
Families that already exist on low wages due to the stress and demand of this kind of life.....
I have had a quote for a new manual wheelchair for Amelia since LAST September.
Almost $9,000.
A chair fitted to her inability to keep her head up now, sit without sliding to either side, sit with her legs and feet in a 90 degree angle and sit for hours on end without getting back and buttock (Amelia and Tom would say BUM! and laugh) pain.
After numerous places denied funding, I wrote a blog on here explaining another part of life for a family that has a child with a disability.
The humiliation and pride that diminishes for the parents that cannot provide for their own child.....
Someone that reads this blog contacted a friend.
That friend rang me directly.
They said "I have been sent a link to your blog. We will fund it for your daughter".
I am now able to say that all the paperwork is completed, (Amelia being in hospital put a delay on it), but the manual wheelchair has been ordered!
The person on here AND the organisation would prefer to stay anonymous, but the amount of appreciation and love we have for these people is beyond anything we could describe.
Amelia will soon be sitting in a chair that will not be creating the new diagnosis of scoliosis to get worse.
------------------------------------------------------------------------------------
Recently Amelia announced that if Bruno Mars and/or Ed Sheeran were to ever have concerts in Melbourne, she would like to push through her fear of crowds and loud noises to attend.
Of course both had to go on sale within weeks of each other after she spoke!!!!
Bruno Mars went on sale and an awesome friend helped me sit on hold for 1 hour (because I was driving to a prebooked luncheon with Challenge!) before we finally got tickets.
Ed Sheeran goes on sale for 4 days later and my brother and I sit on hold for 3.5 hours to get tickets.
We are all separated, but we can work with that.
ALL Christmas and Birthday presents are now done from close family members for the next 12 months!!!!
Amelia then announces that she may like to finally use her "Make a Wish" to request to meet him.
HUGE!
This is still undecided.
-------------------------------------------------------------------------------------------
Finally, next week, Amelia goes on school camp.
She is incredibly anxious because of the new diabetes diagnosis.
She has not experienced "a low" yet and none of us can convince her that she will not end up in a coma if her level drops lower than normal.
Tom has tried his absolute best to convince her she will "feel it" before it gets to that stage.
The ratio of insulin needles to carbohydrate intake is difficult though.
Amelia is analysing EVERYTHING about this camp.
We have reassured her about phone calls, meetings with the school and us being only 20 minutes away.
Nothing is helping.
But tonight she blew Scott and I away.
She pointed at the Itinerary for the camp.
"Talent Show".
She said "I want to sing a song by myself".
Scott and I instantly think of her anxiety and hate of being "centre of attention".
I want to sing "Dear Life" by Delta Goodrem.
"Can I practice in front of you?"
Please take the time to listen to the words below.
Please imagine what they may mean to a 13 year old that has been through as much as Amelia has been through.
Tonight Scott and I crumbled while wondering where and how this child has been created.
She sends so many messages and communicates so much that is beyond what she appears to be........
https://www.youtube.com/watch?v=9wPnGY5PlZY
xxx
Tuesday 23 May 2017
Back to Life
Hello dear friends,
Thank you for listening to my negative rambles over the last few nights.
It has cleansed my mind of everything.
I feel lighter today and have been able to focus on the positives and enjoy a laugh with Scott and the kids.
Amelia is a Warrior Princess.
She has tackled this latest knock with such incredible bravery and grace, it has put me to shame.
Her finger pricks and needles are over and done with before you even have time to blink.
Her Blood Glucose Levels are amazing and she is demanding healthy food after experiencing a high the other night after demanding fish 'n 'chips.
She felt and looked revolting for 16 odd hours and does not want to experience that again.
Tom's levels have also improved a lot as he is doing his best to no longer sneak to the pantry for more food.
Amelia asked Tom to give her a needle for the first time tonight.
He was shaking with anxiety, but he did a marvellous job.
He said "I just love her so much".
WE WILL ALL GET THROUGH THIS LATEST SETBACK.
The only way is up from here and we have already started climbing.
Thank you for your love and concern.
xxx
Thank you for listening to my negative rambles over the last few nights.
It has cleansed my mind of everything.
I feel lighter today and have been able to focus on the positives and enjoy a laugh with Scott and the kids.
Amelia is a Warrior Princess.
She has tackled this latest knock with such incredible bravery and grace, it has put me to shame.
Her finger pricks and needles are over and done with before you even have time to blink.
Her Blood Glucose Levels are amazing and she is demanding healthy food after experiencing a high the other night after demanding fish 'n 'chips.
She felt and looked revolting for 16 odd hours and does not want to experience that again.
Tom's levels have also improved a lot as he is doing his best to no longer sneak to the pantry for more food.
Amelia asked Tom to give her a needle for the first time tonight.
He was shaking with anxiety, but he did a marvellous job.
He said "I just love her so much".
WE WILL ALL GET THROUGH THIS LATEST SETBACK.
The only way is up from here and we have already started climbing.
Thank you for your love and concern.
xxx
Monday 22 May 2017
The latest part 3
As we woke the next morning in hospital , it was like we had never slept.
It was straight into the morning insulin needle before breakfast.
Amelia was an absolute trooper, like she had been the night before.
Scott came in to learn about diabetes from the point of view of Amelia.
(2 different kids and 2 different hospitals teaching).
When he arrived it was already in full swing.
Thank goodness, I had already been downstairs for my heavy dose of coffee!
The dietician spoke in length about diet and carbohydrate servings.
The amount of insulin compared to the amount of carbs she was to consume at each meal.
Amelia showed displeasure across the afternoon until she was ropeable (that is aggressive).
We all asked questions and I could quietly see her life diminishing with each "No. She cannot have that anymore. No I am sorry"
By the time everyone had left, I was left with a very upset child.
Everything she had held dear was now gone.
Every single happiness in the last 6 years,
Every single excitement, was about food.
What else does she have to look forward to?
Her home life is about food only.
No friends come to visit anymore.
No she only has US to make the amazing life now.
(this is absolutely NO criticism on anyone. It is hard keeping constant contact with Amelia).
As we got ready for bed that evening, I saw a child that's life had ended in her own eyes.
They were hollow and sad.
There was no joking or conversation to bring her back.
I myself did not know how we were all going to continue from this latest diagnosis.
Tom kept messaging through his readings to start a competition on readings, but that still did not bring a smile to our faces.
During the late afternoon, our 4 year old friend had been discharged, during our appointments, and we had been left with a 4 week old baby.
No parent or family member.
The tiny little thing cried and coughed during the whole night.
I vaguely remember a doctor in their room speaking of a twisted oesophagus.
I begged the nurse to let me just hold it and know it was loved.
Then hours later I overheard a doctor speaking of the father on dialysis and the mother having no one else to look after the other children.
My heart shattered for this tiny baby and the love it needed.
It reminded me of when Amelia had colic and Scott would have to go to bed, to get ready for work in the morning, while she was screaming.
I would not leave her.
She was going to scream whether I had her or not.
But at least I had her.
At least she was in my arms, knowing she was loved.
The next morning the onslaught of departments started almost immediately.
They wanted to send us home, that day, because her diabetes levels were doing so well (because it was caught early).
"Settle petal" I almost screamed.
"What about the Liver levels dip-shits?".
"Oh yeah. We will get gastro in to see you" they replied.
("I don't have gastro" Amelia yelled. But apparently gastro looks after Liver).
Gastro comes in and says they are very concerned with Amelia's blood test levels especially after the fact she has already had a tumour.
They knew nothing about it.
They will monitor it.
As the next department looking after us gets ready to walk in, I yell "NUMBER 26. YOU ARE NEXT".
Amelia thinks I am hilarious.
Thank fucking god.
I am about to lose my mind with the amount of departments and information over the last few days!
As I am down at the chemist getting Amelia's new meds, to go home, a loud speaker calls "MED Room 239".
That is the tiny baby's room a-joining ours.
OMG.
That tiny little thing needs CPR.
Amelia has so much empathy she will be hysterical.
I run.
I run so fucking fast.
I am thinking of that tiny thing and Amelia's response.
Amelia is panicked and that tiny baby has 20 ICU people around it.
Eventually we get approval to go home.
I get her packed so quickly, after being assured the baby is alive and being moved to ICU.
But the liver is still a concern.
Two hours later we walk in the door, at home, at dinner time.
Finger prick monitors and needles for dinner time.
For 2 children.
Scott and I just look at each other losing it in a psychotic laugh!
Liver will continue.
xxx
It was straight into the morning insulin needle before breakfast.
Amelia was an absolute trooper, like she had been the night before.
Scott came in to learn about diabetes from the point of view of Amelia.
(2 different kids and 2 different hospitals teaching).
When he arrived it was already in full swing.
Thank goodness, I had already been downstairs for my heavy dose of coffee!
The dietician spoke in length about diet and carbohydrate servings.
The amount of insulin compared to the amount of carbs she was to consume at each meal.
Amelia showed displeasure across the afternoon until she was ropeable (that is aggressive).
We all asked questions and I could quietly see her life diminishing with each "No. She cannot have that anymore. No I am sorry"
By the time everyone had left, I was left with a very upset child.
Everything she had held dear was now gone.
Every single happiness in the last 6 years,
Every single excitement, was about food.
What else does she have to look forward to?
Her home life is about food only.
No friends come to visit anymore.
No she only has US to make the amazing life now.
(this is absolutely NO criticism on anyone. It is hard keeping constant contact with Amelia).
As we got ready for bed that evening, I saw a child that's life had ended in her own eyes.
They were hollow and sad.
There was no joking or conversation to bring her back.
I myself did not know how we were all going to continue from this latest diagnosis.
Tom kept messaging through his readings to start a competition on readings, but that still did not bring a smile to our faces.
During the late afternoon, our 4 year old friend had been discharged, during our appointments, and we had been left with a 4 week old baby.
No parent or family member.
The tiny little thing cried and coughed during the whole night.
I vaguely remember a doctor in their room speaking of a twisted oesophagus.
I begged the nurse to let me just hold it and know it was loved.
Then hours later I overheard a doctor speaking of the father on dialysis and the mother having no one else to look after the other children.
My heart shattered for this tiny baby and the love it needed.
It reminded me of when Amelia had colic and Scott would have to go to bed, to get ready for work in the morning, while she was screaming.
I would not leave her.
She was going to scream whether I had her or not.
But at least I had her.
At least she was in my arms, knowing she was loved.
The next morning the onslaught of departments started almost immediately.
They wanted to send us home, that day, because her diabetes levels were doing so well (because it was caught early).
"Settle petal" I almost screamed.
"What about the Liver levels dip-shits?".
"Oh yeah. We will get gastro in to see you" they replied.
("I don't have gastro" Amelia yelled. But apparently gastro looks after Liver).
Gastro comes in and says they are very concerned with Amelia's blood test levels especially after the fact she has already had a tumour.
They knew nothing about it.
They will monitor it.
As the next department looking after us gets ready to walk in, I yell "NUMBER 26. YOU ARE NEXT".
Amelia thinks I am hilarious.
Thank fucking god.
I am about to lose my mind with the amount of departments and information over the last few days!
As I am down at the chemist getting Amelia's new meds, to go home, a loud speaker calls "MED Room 239".
That is the tiny baby's room a-joining ours.
OMG.
That tiny little thing needs CPR.
Amelia has so much empathy she will be hysterical.
I run.
I run so fucking fast.
I am thinking of that tiny thing and Amelia's response.
Amelia is panicked and that tiny baby has 20 ICU people around it.
Eventually we get approval to go home.
I get her packed so quickly, after being assured the baby is alive and being moved to ICU.
But the liver is still a concern.
Two hours later we walk in the door, at home, at dinner time.
Finger prick monitors and needles for dinner time.
For 2 children.
Scott and I just look at each other losing it in a psychotic laugh!
Liver will continue.
xxx
The latest part 2
As Mardi left the room to collect Amelia, the paediatrition stood in the doorway.
"I am worried about you. She already has so much".
I closed the door on her and said "I just need to be alone for a minute please".
I sat in a chair in this sparse and lonely environment.
I wondered whether I needed to cry or just try to process what will become another new normal.
Amelia is petrified of needles and "eating" is her only outlet, passion and "quality of life".
The discussions of dinners, snacks and lunch is her daily routine.
To limit the items and start carbohydrate counting for her, felt like the end.
How can I still provide her with an amazing life by taking her last happiness off her?
Amelia has had walking, playing, socialising and talking taken away.
Food and its enjoyment was the last thing.
I ended up just staring into space and trying to find a positive to what I believed was our final setback.
When Amelia returned, I explained to her what the doctors had said.
She handled it better than me.
After Mardi's husband drove the entire way just to pick her up, we were moved to a ward.
Initially I was not impressed with the "joined" room, but the 5 year old boy we met across the way was a blessing in disguise.
He was chatty, happy and was full of questions.
Amelia was laughing and I found myself remember my days of teaching this age group.
Overnight was not as easy as he needed medical attention and there was a lot of talking and tears.
On that first night, Amelia's very first insulin dose did not arrive till close to 10pm.
Because we were moved from Emergency so late, the order for insulin needed to be redone and everyone had gone home.
Amelia and my anxiety was only climbing, but this little boy distracted us greatly.
Amelia has a MASSIVE needle phobia and when it did finally arrive, she almost squeezed the life out of my hand. But there were no tears.
The needle was withdrawn and her entire face broke into a smile.
"That didn't really hurt" she said and the relief filled the room.
With a decent meal required after each meal, we did not turn off the lights until late.
Amelia fell asleep quickly and I found myself laying there wondering whether the blankets were like this last year. They felt like sandpaper and scratched my skin whenever I moved.
I also found myself wondering what we have done to cause this much pain and heartache.
How are we all going to cope with the newest battle?
I got no sleep.
xxx
"I am worried about you. She already has so much".
I closed the door on her and said "I just need to be alone for a minute please".
I sat in a chair in this sparse and lonely environment.
I wondered whether I needed to cry or just try to process what will become another new normal.
Amelia is petrified of needles and "eating" is her only outlet, passion and "quality of life".
The discussions of dinners, snacks and lunch is her daily routine.
To limit the items and start carbohydrate counting for her, felt like the end.
How can I still provide her with an amazing life by taking her last happiness off her?
Amelia has had walking, playing, socialising and talking taken away.
Food and its enjoyment was the last thing.
I ended up just staring into space and trying to find a positive to what I believed was our final setback.
When Amelia returned, I explained to her what the doctors had said.
She handled it better than me.
After Mardi's husband drove the entire way just to pick her up, we were moved to a ward.
Initially I was not impressed with the "joined" room, but the 5 year old boy we met across the way was a blessing in disguise.
He was chatty, happy and was full of questions.
Amelia was laughing and I found myself remember my days of teaching this age group.
Overnight was not as easy as he needed medical attention and there was a lot of talking and tears.
On that first night, Amelia's very first insulin dose did not arrive till close to 10pm.
Because we were moved from Emergency so late, the order for insulin needed to be redone and everyone had gone home.
Amelia and my anxiety was only climbing, but this little boy distracted us greatly.
Amelia has a MASSIVE needle phobia and when it did finally arrive, she almost squeezed the life out of my hand. But there were no tears.
The needle was withdrawn and her entire face broke into a smile.
"That didn't really hurt" she said and the relief filled the room.
With a decent meal required after each meal, we did not turn off the lights until late.
Amelia fell asleep quickly and I found myself laying there wondering whether the blankets were like this last year. They felt like sandpaper and scratched my skin whenever I moved.
I also found myself wondering what we have done to cause this much pain and heartache.
How are we all going to cope with the newest battle?
I got no sleep.
xxx
Saturday 20 May 2017
The latest part 1
Hello dear friends,
I am going to try and write what should be many blogs, in one.
No Internet connection and tiredness have accumulated into one big one tonight.
Since January, Amelia has been lacking in energy and experiencing one basic symptom of UTI.
Many times I have told friends and family "She just does not look right".
Because the one symptom was also the only symptom last year, everyone treated it as a UTI with antibiotics.
Amelia experienced approximately 6 UTI's post surgery last year.
Her face recently became swollen, with red marks under her eyes and she intergrated between sad, irritable and happy.
A UTI is like mastitis (for those that have ever experienced it while breastfeeding).
It is a "flu like affect" and responds just as quickly to antibiotics as it appears.
Amelia was not getting 100% better from the medication, but the symptom kept disappearing briefly.
Now I have to confess to a major mistake on my behalf.
Due to Amelia's PTSD symptoms, I treated it as the same as last year.
No tests.
She begged me not to humiliate her again for a test.
I agreed and should not have.
I forced Amelia to have a test in early May 2017.
It came back with high glucose in the urine.
"Your GP is not concerned about that" our local sister said.
Well, I was.
I already have a Type 1 Diabetic at home.
When Amelia got home from school, I finger pricked her with Tom's monitor.
9.2
(between 4-8 is normal).
Almost 3 hours after eating.
NOT GOOD.
A few days later we submitted "full bloods" from order by RCH.
(only after I called them with my concerns).
Every Thursday, I deliver medications to the elderly and disabled for 2 hours.
The Thursday after Amelia's blood test, I delivered medications to the doctors surgery we have frequented for 10+ years.
A GP we rarely see.....
One we actually avoid in appointments.....
The ONLY one we could get into to do full bloods on this day.
He called me into his office while I was working to express concern about Amelia's high glucose/sugar level in her blood and her exceptionally high Liver function count.
NO ONE has ever expressed concern at this surgery or RCH.
For some stupid reason I instantly thought of the 8mm lesion on Amelia's Liver that they "were keeping an eye on".
He was the one to address the concern of high liver levels and I have now obviously changed my mind about him.
I look at the liver counts. All 3 are at least 10 times the normal level.
Last years Ovarian Tumour has obviously had a profound affect on me and how it blindsided us.
(More to come about this later)
Now I think I am paranoid and expecting the worst with each new abnormality.
By the time I arrived back at the chemist, I was a blubbering mess.
Liver Cancer?
My more recent blogs on here obviously point at my concern and worry about her decline.
I have not been thinking 100% obviously lately in my concern.
No one answering my emails and my calls of concern at RCH.
After what Scott and I thought was a promise of immediate investigation on the Friday, from RCH, we heard nothing all weekend.
I was fortunate to have an appointment with a Paediatrition from the same department at RCH at Amelia's school on the Monday.
What I can only assume is the affect of last years "sudden" cancer and my local GP's concern on the matter being "urgent", this poor woman got a very neurotic and paranoid mother in an appointment 90 minutes late.
Some had already seen me after I had sat in the toilets sobbing, trying to expel my fear leading up to this appointment.
The paed left the room on numerous occasions, to make phone calls, after I presented her with printed version of the recent blood test results.
She called Amelia in and Amelia instantly liked her demeanor, until the doctor asked for an immediate urine test.
At this point Amelia started up her electric wheelchair and announced firmly "I am going now".
(At least we are correctly teaching her how to respond to emotions!).
Great.
This is going to be awesome to get, I thought.
Amelia screamed the place down and called out for anyone she loves and adores as I simply tried to catch her urine.
You would think I was murdering her.
This paediatrition rang late that night to request a full blood test again the following morning.
No reason why.
At 8am the following morning, she rings to change the plans.
"Actually, can you please bring her into emergency ASAP. I have a team of doctors waiting for her".
Liver cancer is front of my mind.
I started crying and explained to both kids what was going to happen.
Tom starts sobbing that it is his "first day of Naplan and I need to be around to support him this week".
I now realise he was just putting a barrier around himself to protect the heartache from last time.
Amelia sobbed and I saw the fear of the unknown.
The machines, operations, canula's and doctors speaking about her "differences".
I ran to my neighbours without thinking.
Scott had already left for work and I needed to get Tom to school.
My neighbour offered to take hi, but I knew immediately I needed to calm Tom down and reassure him all was going to be ok on the way to school ("yeah you said that last time, and she had cancer" is his reaction).
Scott spoke to him on speaker and explained the 2 of them would get through this at home together.
No staying at grandparents.
Together.
So he would know what was happening this time.
That calmed him.
As Tom got out of the car, he had tears streaming down his face.
"I am going to go and talk to my friends mum" he said.
"Perfect. Also talk to Miss........." I said.
People who went through it with him last year are surely going to support him this year.
I rang his school on the way home and explained the situation.
I needed them to know that he was very emotional and vulnerable right now.
After past experience, I knew he would be surrounded by care.
(To hear at a later date that a staff member on this page read of our most recent scenario while on holiday in America, and chose to immediately message Tom's teacher........just made me crumble.
I need this help to look after him. We all need to keep him emotionally stable and talking when this stuff happens. It is the people and stuff to remember always ).
When I got home, my neighbour was adamant that she was cancelling work for the day and coming to emergency with us (1 hour away).
"How will you get home?" I asked her.
"I will work it out" and then she said words that make me not refuse.
At 11:30am we arrived at RCH and were moved almost immediately into a little emergency room with a glass door.
The same type of room the other 2 times.
Doctors and nurses come and go and do not give you any indication of what they are doing or about the test results that are returning to their computer screen.
Amelia is always anxious in this situation and my neighbour proved to be a godsend!
Even though she did not know how she would get home!
She kept Amelia calm.
Suddenly 3 people came in and announced they were from the "Diabetes Team".
"Amelia has diabetes and we will be starting her on insulin tonight".
I looked at them in shock.
They explained her blood test points towards diabetes.
I go into panic.
I already have a Type 1 at home.
For 3+ years it has been a joke that "at least Amelia does not have it".
Amelia has a needle phobia and is an incredibly fussy eater.
I tell my neighbour (lets call her Mardi) that I have to leave the room briefly.
I know she will look after Amelia extremely well.
I ring Scott.
I ring our paed from school.
I demand the blood test results from emergency.
She cannot have Diabetes.
She will not cope!
The liver function tests have risen yet again, but the glucose in urine and blood is still also high.
The paed comes in and with her beautiful calm demeanor and we discuss Amelia's "complex" disease of A-T.
I explain my concern of them not looking at the "whole child" and all of the complexities that A-T brings.
Don't put her straight into the bag of diabetes, until we look at everything in that blood test that may be rising the levels of sugar in blood and urine.
The diabetes teams returns and I put Scott on speaker phone.
Amelia has been stolen by another school parent staying at the hospital (so incredibly grateful).
The diabetes team is now headed by a very forceful and outspoken endocrinologist.
Scott, Mardi and I listen to what she has to say.
The evidence is endless that Amelia has diabetes.
Scott (at home) and me at the hospital, quietly crumble about what she is saying.
How will we cope?
She already has so much happening.
They point out genetics and that it could not be stopped.
Food is her only "outlet" in what is already a difficult life.
How can we possibly take away her "ONLY" outlet.
Then suddenly another voice speaks on my phone.
Scott had already asked numerous questions.
Scott had never warned any us of who was sitting next to him.....
"Hello....... My name is Tommy".
"Why are you putting her on syringes?
Put her on pens, like me."
"And also....... why put her on lantus for long acting?
If she is just starting out, it is really hurting me after starting it.
Put her on levemir and gradually move her to lantus. It will ease her into it.
She is only at 9 in her finger prick readings. Why diagnose her so fast?
Can I come into the hospital and help her through this?".
And every single person in the room lost their professionalism.
They all leant forward and grabbed their heart and quietly sighed.
A little voice that sounded so incredibly tiny (even to me) made such a difference to her overall treatment.
A little voice that has reportedly been so spoken about now, it has been noted for future patients.
I was in denial until I heard him.
My son.
My amazing 10 year old son.
More later xxx
I am going to try and write what should be many blogs, in one.
No Internet connection and tiredness have accumulated into one big one tonight.
Since January, Amelia has been lacking in energy and experiencing one basic symptom of UTI.
Many times I have told friends and family "She just does not look right".
Because the one symptom was also the only symptom last year, everyone treated it as a UTI with antibiotics.
Amelia experienced approximately 6 UTI's post surgery last year.
Her face recently became swollen, with red marks under her eyes and she intergrated between sad, irritable and happy.
A UTI is like mastitis (for those that have ever experienced it while breastfeeding).
It is a "flu like affect" and responds just as quickly to antibiotics as it appears.
Amelia was not getting 100% better from the medication, but the symptom kept disappearing briefly.
Now I have to confess to a major mistake on my behalf.
Due to Amelia's PTSD symptoms, I treated it as the same as last year.
No tests.
She begged me not to humiliate her again for a test.
I agreed and should not have.
I forced Amelia to have a test in early May 2017.
It came back with high glucose in the urine.
"Your GP is not concerned about that" our local sister said.
Well, I was.
I already have a Type 1 Diabetic at home.
When Amelia got home from school, I finger pricked her with Tom's monitor.
9.2
(between 4-8 is normal).
Almost 3 hours after eating.
NOT GOOD.
A few days later we submitted "full bloods" from order by RCH.
(only after I called them with my concerns).
Every Thursday, I deliver medications to the elderly and disabled for 2 hours.
The Thursday after Amelia's blood test, I delivered medications to the doctors surgery we have frequented for 10+ years.
A GP we rarely see.....
One we actually avoid in appointments.....
The ONLY one we could get into to do full bloods on this day.
He called me into his office while I was working to express concern about Amelia's high glucose/sugar level in her blood and her exceptionally high Liver function count.
NO ONE has ever expressed concern at this surgery or RCH.
For some stupid reason I instantly thought of the 8mm lesion on Amelia's Liver that they "were keeping an eye on".
He was the one to address the concern of high liver levels and I have now obviously changed my mind about him.
I look at the liver counts. All 3 are at least 10 times the normal level.
Last years Ovarian Tumour has obviously had a profound affect on me and how it blindsided us.
(More to come about this later)
Now I think I am paranoid and expecting the worst with each new abnormality.
By the time I arrived back at the chemist, I was a blubbering mess.
Liver Cancer?
My more recent blogs on here obviously point at my concern and worry about her decline.
I have not been thinking 100% obviously lately in my concern.
No one answering my emails and my calls of concern at RCH.
After what Scott and I thought was a promise of immediate investigation on the Friday, from RCH, we heard nothing all weekend.
I was fortunate to have an appointment with a Paediatrition from the same department at RCH at Amelia's school on the Monday.
What I can only assume is the affect of last years "sudden" cancer and my local GP's concern on the matter being "urgent", this poor woman got a very neurotic and paranoid mother in an appointment 90 minutes late.
Some had already seen me after I had sat in the toilets sobbing, trying to expel my fear leading up to this appointment.
The paed left the room on numerous occasions, to make phone calls, after I presented her with printed version of the recent blood test results.
She called Amelia in and Amelia instantly liked her demeanor, until the doctor asked for an immediate urine test.
At this point Amelia started up her electric wheelchair and announced firmly "I am going now".
(At least we are correctly teaching her how to respond to emotions!).
Great.
This is going to be awesome to get, I thought.
Amelia screamed the place down and called out for anyone she loves and adores as I simply tried to catch her urine.
You would think I was murdering her.
This paediatrition rang late that night to request a full blood test again the following morning.
No reason why.
At 8am the following morning, she rings to change the plans.
"Actually, can you please bring her into emergency ASAP. I have a team of doctors waiting for her".
Liver cancer is front of my mind.
I started crying and explained to both kids what was going to happen.
Tom starts sobbing that it is his "first day of Naplan and I need to be around to support him this week".
I now realise he was just putting a barrier around himself to protect the heartache from last time.
Amelia sobbed and I saw the fear of the unknown.
The machines, operations, canula's and doctors speaking about her "differences".
I ran to my neighbours without thinking.
Scott had already left for work and I needed to get Tom to school.
My neighbour offered to take hi, but I knew immediately I needed to calm Tom down and reassure him all was going to be ok on the way to school ("yeah you said that last time, and she had cancer" is his reaction).
Scott spoke to him on speaker and explained the 2 of them would get through this at home together.
No staying at grandparents.
Together.
So he would know what was happening this time.
That calmed him.
As Tom got out of the car, he had tears streaming down his face.
"I am going to go and talk to my friends mum" he said.
"Perfect. Also talk to Miss........." I said.
People who went through it with him last year are surely going to support him this year.
I rang his school on the way home and explained the situation.
I needed them to know that he was very emotional and vulnerable right now.
After past experience, I knew he would be surrounded by care.
(To hear at a later date that a staff member on this page read of our most recent scenario while on holiday in America, and chose to immediately message Tom's teacher........just made me crumble.
I need this help to look after him. We all need to keep him emotionally stable and talking when this stuff happens. It is the people and stuff to remember always ).
When I got home, my neighbour was adamant that she was cancelling work for the day and coming to emergency with us (1 hour away).
"How will you get home?" I asked her.
"I will work it out" and then she said words that make me not refuse.
At 11:30am we arrived at RCH and were moved almost immediately into a little emergency room with a glass door.
The same type of room the other 2 times.
Doctors and nurses come and go and do not give you any indication of what they are doing or about the test results that are returning to their computer screen.
Amelia is always anxious in this situation and my neighbour proved to be a godsend!
Even though she did not know how she would get home!
She kept Amelia calm.
Suddenly 3 people came in and announced they were from the "Diabetes Team".
"Amelia has diabetes and we will be starting her on insulin tonight".
I looked at them in shock.
They explained her blood test points towards diabetes.
I go into panic.
I already have a Type 1 at home.
For 3+ years it has been a joke that "at least Amelia does not have it".
Amelia has a needle phobia and is an incredibly fussy eater.
I tell my neighbour (lets call her Mardi) that I have to leave the room briefly.
I know she will look after Amelia extremely well.
I ring Scott.
I ring our paed from school.
I demand the blood test results from emergency.
She cannot have Diabetes.
She will not cope!
The liver function tests have risen yet again, but the glucose in urine and blood is still also high.
The paed comes in and with her beautiful calm demeanor and we discuss Amelia's "complex" disease of A-T.
I explain my concern of them not looking at the "whole child" and all of the complexities that A-T brings.
Don't put her straight into the bag of diabetes, until we look at everything in that blood test that may be rising the levels of sugar in blood and urine.
The diabetes teams returns and I put Scott on speaker phone.
Amelia has been stolen by another school parent staying at the hospital (so incredibly grateful).
The diabetes team is now headed by a very forceful and outspoken endocrinologist.
Scott, Mardi and I listen to what she has to say.
The evidence is endless that Amelia has diabetes.
Scott (at home) and me at the hospital, quietly crumble about what she is saying.
How will we cope?
She already has so much happening.
They point out genetics and that it could not be stopped.
Food is her only "outlet" in what is already a difficult life.
How can we possibly take away her "ONLY" outlet.
Then suddenly another voice speaks on my phone.
Scott had already asked numerous questions.
Scott had never warned any us of who was sitting next to him.....
"Hello....... My name is Tommy".
"Why are you putting her on syringes?
Put her on pens, like me."
"And also....... why put her on lantus for long acting?
If she is just starting out, it is really hurting me after starting it.
Put her on levemir and gradually move her to lantus. It will ease her into it.
She is only at 9 in her finger prick readings. Why diagnose her so fast?
Can I come into the hospital and help her through this?".
And every single person in the room lost their professionalism.
They all leant forward and grabbed their heart and quietly sighed.
A little voice that sounded so incredibly tiny (even to me) made such a difference to her overall treatment.
A little voice that has reportedly been so spoken about now, it has been noted for future patients.
I was in denial until I heard him.
My son.
My amazing 10 year old son.
More later xxx
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