Hello.
Thank you for reading and commenting on last night's entry.
It is something that has been building and I have been unable to articulate it until now.
Thank you for your calls, messages and contact directly with Scott (he will not leave my side!).
Thank you for being non judgemental and accepting my current thoughts in this difficult life we lead.
I am going to now attempt moving forward by addressing the bulk of the issues.
I am going to make a chart for myself, setting out a routine for the week that allows for "downtime" while the kids are at school.
I am going to finish arranging this house to the way I know makes me relax.
I am going to begin spoiling myself again with books, movies and favorite TV shows.
I am going to plan meals and snacks that puts a smile on everyone's faces.
I am going to make a chart for Tom that may minimise arguments over insulin needles.
I am going to spend more quality time with Amelia.
Finally I am going to address the way I feel about myself.
My self esteem needs improvement (or I actually just need some!).
Try to stop the self loathing that appears every time a friend disappears or a disagreement occurs.
I am going to learn to accept that we think differently than the majority of those around us and some find they cannot connect with that.
I am going to begin making a list of positives daily.
I am going to "stop and smell the roses".
Thank you for being there.
xxx
Amelia is a beautiful ten year old who has been diagnosed with Ataxia Telangiectasia.
Sunday, 30 November 2014
Saturday, 29 November 2014
Strong?
Hello.
What I am about to write challenges those that believe I am strong.
It will create a a divided opinion on me as a person.
It is me though.
This year I have crept slowly into the chemical imbalance that is "depression".
My work situation could not have been any less ideal.
To accept a position that many others have left was always going to be a difficult role to take.
The battle to accept that I was no longer the main carer of both kids was harder than I imagined to accept.
Scott was amazing as a "house husband", do not get me wrong, but I was no longer the go to person.
I was no longer the person to check on them in school and be the first to hear about their day.
Instead I was the exhausted one who came home crying because I could not defend myself in the work politics arena.
When Scott and I reversed the role reversal, I did not easily slip back into my role of housewife and mother.
The old routine has not come back to me easily and Tom's diabetes throws a spanner into that anyway.
My Dad had a long stay in hospital and is still not better.......but at home, at least.
My Mum is not well either.
The past fortnight I have steeped lower than I have ever been.
I am just so sad.
My mood....everything.
I am just exceptionally sad.
I have tried many things to "get out of it" but nothing is working.
I think the final straw in this battle has been the suggestion Tom has "coeliacs disease".
I know many of you, with knowledge in this area, will say "It is easy once you learn".
I realise that.
But, for me, it is another diagnosis.
Another sadness for a child in our family.
Another diagnosis.
It seems every time we move through a difficult stage, this baseball bat comes and hits me in the head.
WHY ARE YOU COPING? GET BACK DOWN THERE.
I thought when we were told to "go home and cherish Amelia. There is nothing we can do" would be the lowest of lows. And lets be honest a statement that is everyone's worst nightmare.
Then once we found positives, there were extreme highs.
Media attention (papers, magazines and T.V.) Disneyland, new car, car conversion, medical equipment.
Everything was going to be ok.
These people love Amelia as we do and will support us through this.
Then I lost some very close friends through disagreement.......extreme low.
Amelia's acknowledgement of where she "belongs", new friends, T.V. commercial, Tom developing into a very kind and clever person.......
BAM - Tom's diabetes diagnosis at 5pm last Christmas Eve.........extreme low.
Now possibly coeliacs disease.
Most people will not understand why I am struggling.
Most people would not understand my sadness.
When you live with Ataxia Telangiectasia and Juvenile Diabetes every single day, it is hard.
Sometimes too hard.
When he battles his needles and argues with you for 30 minutes every morning about where to put the needle.
When he has to watch the amount of fat and sugar he eats and count the carbs.......
When he cannot leave the house and get something "appropriate to eat", like parties, BBQ's or resturaunts.
When he goes to sleep and you do not know if his "levels" will get him through the night.
When a teacher will not let him "test" because he/she does not understand.
When he says "I hate my life" because he has diabetes.
When you have to shower, toilet, feed, dress.....double click the bloody ipad 2 times for her.....it is hard.
When you cannot even bloody understand your own child talk anymore.
When you have in your memory a beautiful, happy, magnetic little girl that was so innocent and had the world at her fingertips....
When her mobilty, speech and friends (because they cannot cope) are ripped away from her.
When her comprehension becomes so slow and yet she is still intellectual enough to mourn and grieve for that part that has slipped away.
She becomes angry, sad and fed up.
She asks "why me?".
She yells at me "do you know how hard it is to be me?".
No.
But I know how hard it is to care for, love and look after you.
To make you my whole world.
To make myself responsible to give you the most amazing life I can possibly give you in the time you are with us.
To make myself feel guilty for every moment of every day that I cannot offer that to you.
To know that I am trying so hard to push myself to my absolute limit to give you what you deserve in the short time that you are here.
I only know that side.
Very deeply.
It goes beyond sad.
The depression goes deeper.
When you hear about possible treatments and studies that are still "developing".
FOR FUCKS SAKE.
Why are they still developing?
She is going to be dead (literally) before any of them eventuate.
Is it money?
Is it time?
Is it that they do not know where the hell to look?
All of this accumulates and catches up with you.
So if you think that I am strong....
please don't.
I am just like you.
All I ever wanted was to have a happy life with Scott and to have healthy children.
I do not think that is too much to ask.
What I am about to write challenges those that believe I am strong.
It will create a a divided opinion on me as a person.
It is me though.
This year I have crept slowly into the chemical imbalance that is "depression".
My work situation could not have been any less ideal.
To accept a position that many others have left was always going to be a difficult role to take.
The battle to accept that I was no longer the main carer of both kids was harder than I imagined to accept.
Scott was amazing as a "house husband", do not get me wrong, but I was no longer the go to person.
I was no longer the person to check on them in school and be the first to hear about their day.
Instead I was the exhausted one who came home crying because I could not defend myself in the work politics arena.
When Scott and I reversed the role reversal, I did not easily slip back into my role of housewife and mother.
The old routine has not come back to me easily and Tom's diabetes throws a spanner into that anyway.
My Dad had a long stay in hospital and is still not better.......but at home, at least.
My Mum is not well either.
The past fortnight I have steeped lower than I have ever been.
I am just so sad.
My mood....everything.
I am just exceptionally sad.
I have tried many things to "get out of it" but nothing is working.
I think the final straw in this battle has been the suggestion Tom has "coeliacs disease".
I know many of you, with knowledge in this area, will say "It is easy once you learn".
I realise that.
But, for me, it is another diagnosis.
Another sadness for a child in our family.
Another diagnosis.
It seems every time we move through a difficult stage, this baseball bat comes and hits me in the head.
WHY ARE YOU COPING? GET BACK DOWN THERE.
I thought when we were told to "go home and cherish Amelia. There is nothing we can do" would be the lowest of lows. And lets be honest a statement that is everyone's worst nightmare.
Then once we found positives, there were extreme highs.
Media attention (papers, magazines and T.V.) Disneyland, new car, car conversion, medical equipment.
Everything was going to be ok.
These people love Amelia as we do and will support us through this.
Then I lost some very close friends through disagreement.......extreme low.
Amelia's acknowledgement of where she "belongs", new friends, T.V. commercial, Tom developing into a very kind and clever person.......
BAM - Tom's diabetes diagnosis at 5pm last Christmas Eve.........extreme low.
Now possibly coeliacs disease.
Most people will not understand why I am struggling.
Most people would not understand my sadness.
When you live with Ataxia Telangiectasia and Juvenile Diabetes every single day, it is hard.
Sometimes too hard.
When he battles his needles and argues with you for 30 minutes every morning about where to put the needle.
When he has to watch the amount of fat and sugar he eats and count the carbs.......
When he cannot leave the house and get something "appropriate to eat", like parties, BBQ's or resturaunts.
When he goes to sleep and you do not know if his "levels" will get him through the night.
When a teacher will not let him "test" because he/she does not understand.
When he says "I hate my life" because he has diabetes.
When you have to shower, toilet, feed, dress.....double click the bloody ipad 2 times for her.....it is hard.
When you cannot even bloody understand your own child talk anymore.
When you have in your memory a beautiful, happy, magnetic little girl that was so innocent and had the world at her fingertips....
When her mobilty, speech and friends (because they cannot cope) are ripped away from her.
When her comprehension becomes so slow and yet she is still intellectual enough to mourn and grieve for that part that has slipped away.
She becomes angry, sad and fed up.
She asks "why me?".
She yells at me "do you know how hard it is to be me?".
No.
But I know how hard it is to care for, love and look after you.
To make you my whole world.
To make myself responsible to give you the most amazing life I can possibly give you in the time you are with us.
To make myself feel guilty for every moment of every day that I cannot offer that to you.
To know that I am trying so hard to push myself to my absolute limit to give you what you deserve in the short time that you are here.
I only know that side.
Very deeply.
It goes beyond sad.
The depression goes deeper.
When you hear about possible treatments and studies that are still "developing".
FOR FUCKS SAKE.
Why are they still developing?
She is going to be dead (literally) before any of them eventuate.
Is it money?
Is it time?
Is it that they do not know where the hell to look?
All of this accumulates and catches up with you.
So if you think that I am strong....
please don't.
I am just like you.
All I ever wanted was to have a happy life with Scott and to have healthy children.
I do not think that is too much to ask.
Monday, 24 November 2014
Yep
Hello long lost friends.
It has been a while and there are multiple reasons for that.
Struggling to know where to begin.
Lets put it in point form......
1. Scott is working full time and I am home full time again.
Bigger adjustment than previously thought.
2. I have been trying to re-establish myself at the kids schools.
I like them to know that I am involved and to hear how they are going.
(This is still at developing stage).
3. Attempting to get the house to a stage where I like it.
Lots of rearranging, moving, tidying and organising
(ALSO still at development stage- you will see this LOTS!).
4. My dad had an unexpected visit to hospital.
(Very emotional, time consuming and scary. I was the "go to" person for various reasons during this time).
He was in there for approximately 4 weeks and is still not better.
He is taking lots of drugs.
(lots of stories of how funny he thinks he is at later date).
5. Tom shows that he is carrying too much on his little shoulders for an 8 year old.
Book Psychologist.
6. Amelia says "I cannot see properly. I think I need glasses".
Book Optometrist.
7. Finally have meeting with Tom's new medical team and discover we have been taught NOTHING that we should have been taught.
Tom needs blood tests and optometrist to see what damage (if any) has been done to his body.
(referral still on noticeboard)
8. My 40th Birthday AND Party.
9.Amelia needs glasses but Tom doesn't.
10. Tom's psychologist is awesome.
11. Dentist visit.
Tom is fine, Amelia has the signs of gum disease AND screams the place down because she is petrified.
12. Hear about a medicine that is helping an A-T child in America.
See Video evidence.
Research and see how it helps many things that A-T destroys.
It is illegal in Australia.
Medical Marijuana.
13. Amelia forgets to wear glasses to school.
"Don't worry mum. I am a rebel. We don't follow rules in this house".
14. A medicine in Italy helping A-T children .......... through unorthadox trials.
Betamethasone (a steroid).
Steroid cannot be taken normally.
Blood needs to be drawn from child, rinsed, steroid stirred through, blood inserted back in child.
Qld A-T clinic hoping to be part of more ethical trial.
Amelia would need the "procedure" once a month....... in Brisbane (3 hr plane flight from here).
15. Amanda goes to see Osteotherapist.
She comments that Amanda's body seems inflammed from neck to toe.
Notices shoulder is out of socket.
"You are 1 lift away from serious injury".
16. Due to mum being shit house atm, Tom does not take money for school disco.
He gets handed an ipad and is left with it unsupervised (at school).
He googles ALL of our names.
This includes Amelia Nicholds.
Take a breath.
Amelia and Tom are not ready for the truth of Ataxia Telangiectasia.
Tom then counts how many photos there are of Amelia online COMPARED to him.
He does not READ everything there is to read.
Tom comes home and complains that we have put more photo's of HER than HIM.
17. Scott arrives home from work to Amanda sobbing.
Tom is screaming and sobbing (because mum is).
Amelia has headphones on watching a Minecraft video.
Amanda decides depression has arrived/
This blog is about Amelia.
SHE IS FINE.
(Footnote : All clothes and dishes have been cleaned during this time.
There has been food placed on the table during this time - no comment on WHAT.
Children have NOT arrived at school on time everyday).
Evidence that Amelia IS happy
My dad and I at my 40th.
My beautiful friends at my 40th (at a trampoline warehouse)
.JPG)
Miss Amelia with her glasses.
Just remember the WHOLE family is affected by A-T, not just the child with it.
xxx
(Footnote 2 : Amanda will remember many more things after pressing Publish).
It has been a while and there are multiple reasons for that.
Struggling to know where to begin.
Lets put it in point form......
1. Scott is working full time and I am home full time again.
Bigger adjustment than previously thought.
2. I have been trying to re-establish myself at the kids schools.
I like them to know that I am involved and to hear how they are going.
(This is still at developing stage).
3. Attempting to get the house to a stage where I like it.
Lots of rearranging, moving, tidying and organising
(ALSO still at development stage- you will see this LOTS!).
4. My dad had an unexpected visit to hospital.
(Very emotional, time consuming and scary. I was the "go to" person for various reasons during this time).
He was in there for approximately 4 weeks and is still not better.
He is taking lots of drugs.
(lots of stories of how funny he thinks he is at later date).
5. Tom shows that he is carrying too much on his little shoulders for an 8 year old.
Book Psychologist.
6. Amelia says "I cannot see properly. I think I need glasses".
Book Optometrist.
7. Finally have meeting with Tom's new medical team and discover we have been taught NOTHING that we should have been taught.
Tom needs blood tests and optometrist to see what damage (if any) has been done to his body.
(referral still on noticeboard)
8. My 40th Birthday AND Party.
9.Amelia needs glasses but Tom doesn't.
10. Tom's psychologist is awesome.
11. Dentist visit.
Tom is fine, Amelia has the signs of gum disease AND screams the place down because she is petrified.
12. Hear about a medicine that is helping an A-T child in America.
See Video evidence.
Research and see how it helps many things that A-T destroys.
It is illegal in Australia.
Medical Marijuana.
13. Amelia forgets to wear glasses to school.
"Don't worry mum. I am a rebel. We don't follow rules in this house".
14. A medicine in Italy helping A-T children .......... through unorthadox trials.
Betamethasone (a steroid).
Steroid cannot be taken normally.
Blood needs to be drawn from child, rinsed, steroid stirred through, blood inserted back in child.
Qld A-T clinic hoping to be part of more ethical trial.
Amelia would need the "procedure" once a month....... in Brisbane (3 hr plane flight from here).
15. Amanda goes to see Osteotherapist.
She comments that Amanda's body seems inflammed from neck to toe.
Notices shoulder is out of socket.
"You are 1 lift away from serious injury".
16. Due to mum being shit house atm, Tom does not take money for school disco.
He gets handed an ipad and is left with it unsupervised (at school).
He googles ALL of our names.
This includes Amelia Nicholds.
Take a breath.
Amelia and Tom are not ready for the truth of Ataxia Telangiectasia.
Tom then counts how many photos there are of Amelia online COMPARED to him.
He does not READ everything there is to read.
Tom comes home and complains that we have put more photo's of HER than HIM.
17. Scott arrives home from work to Amanda sobbing.
Tom is screaming and sobbing (because mum is).
Amelia has headphones on watching a Minecraft video.
Amanda decides depression has arrived/
This blog is about Amelia.
SHE IS FINE.
(Footnote : All clothes and dishes have been cleaned during this time.
There has been food placed on the table during this time - no comment on WHAT.
Children have NOT arrived at school on time everyday).
Miss Amelia with her glasses.
Just remember the WHOLE family is affected by A-T, not just the child with it.
xxx
(Footnote 2 : Amanda will remember many more things after pressing Publish).
Wednesday, 5 November 2014
November 2014
Hello Everyone.
I have been wanting to update for so many weeks now but have had trouble finding the time.
Scott is back at work and I am finding it difficult to find my "niche" again.
There is so much to do and so little time.
My dad has also been in hospital and I found that he became a big priority in my day.
Normal jobs combined with "get house back to Amanda way" jobs, kids wanting me to spend time with them at school and exhaustion.
Pure and utter exhaustion.
I am looking forward to just being able to relax for a couple of hours.....when everything is done!
Amelia is very happy but still keeps calling me dad.
She points out what DAD does compared to what I do.
She vomited each morning when we made the initial changeover but has now stopped........thankfully.
Tom is very cuddly and keeps talking about "mummy and tom time AND daddy and Tom time".
Recently we have endured dentist visits, doctor visits and this week an eye check.
Amelia has been complaining of a sore tooth and feels that she needs glasses.... "I cannot see properly anymore".
Tom needs these checks for his diabetes anyway, so we all go together.
Amelia had to attend a "dressmaker appointment" the other night.
She is going to be "a junior bridesmaid" next year.
She has researched her own dress style on the Internet.
She has chosen the exact length and color of her dress.
When the invitation was extended for me to attend the preparations she firmly said "NO. This is my special time with the bride".
Amelia still has so many fears but is also displaying so much confidence and independence.
Halloween happened to be my 40th birthday.
Amelia ONLY wanted to discuss Halloween and how many sleeps till the big day arrived.
Tom thought "mum's birthday" was more important!
She researched costumes and where we would be trick or treating.
In the days prior she had me shopping for all of the costume pieces!
We have changed Tom's medical care team and are extremely happy with who is now looking after him.
The relationship he has with Amelia is now both positive and negative..... (negative for parenting!)
They are SO close and get along SO well that it can be difficult to separate them at bedtime.
(GET OUT OF HER BED TOM AND GET INTO YOURS!)
Tom ALWAYS chooses to make Amelia laugh hysterically when I need to get her dressed each day.
Seriously Tom? Right now? Could you not have waited ??!!
On Halloween, Tom emerged from every house and ran up to Amelia "Here I got this for you. I saw your favorite chocolate in their bowl. I told them that you are in a wheelchair and that I needed to get it for you".
No words for the type of person he is becoming.
Finally......
We lost another A-T child today.
Her name was Liv and she was only 13 years old.
13.
Amelia is 11.
Liv had the flu last week and ended up in hospital.
She died 24 hours later.
Having a child with an illness like Amelia's is a very lonely path.
Friends come and go.
But no matter how many friends you have, we are still the parents of an amazing little girl called Amelia.
We are the only ones who nurse, care for and watch the decline......
We see others battle with their own A-T children online.
Every single day we watch and do what no parent should for a child Amelia's age.
We watch and wait for the future.
Today is too close to home.
It reminds us of what will occur in our future.
It reminds us of how it can happen tomorrow.
Keeping sick children and adults away from Amelia is paramount.
I have seen children at Amelia's school that are sick.
A school that has many children with "a life threatening illness".
The parents STILL send them in sick.
When I see these children in Amelia's class, I take her home.
I am not ready to say the final goodbye.
I have shed so many tears for this family in America today
xxx
Melbourne Cup Day
Similar to the Bridesmaid dress Amelia likes
Halloween
The new pet
Royal Melbourne Show
Black Shadow
Halloween.
I have been wanting to update for so many weeks now but have had trouble finding the time.
Scott is back at work and I am finding it difficult to find my "niche" again.
There is so much to do and so little time.
My dad has also been in hospital and I found that he became a big priority in my day.
Normal jobs combined with "get house back to Amanda way" jobs, kids wanting me to spend time with them at school and exhaustion.
Pure and utter exhaustion.
I am looking forward to just being able to relax for a couple of hours.....when everything is done!
Amelia is very happy but still keeps calling me dad.
She points out what DAD does compared to what I do.
She vomited each morning when we made the initial changeover but has now stopped........thankfully.
Tom is very cuddly and keeps talking about "mummy and tom time AND daddy and Tom time".
Recently we have endured dentist visits, doctor visits and this week an eye check.
Amelia has been complaining of a sore tooth and feels that she needs glasses.... "I cannot see properly anymore".
Tom needs these checks for his diabetes anyway, so we all go together.
Amelia had to attend a "dressmaker appointment" the other night.
She is going to be "a junior bridesmaid" next year.
She has researched her own dress style on the Internet.
She has chosen the exact length and color of her dress.
When the invitation was extended for me to attend the preparations she firmly said "NO. This is my special time with the bride".
Amelia still has so many fears but is also displaying so much confidence and independence.
Halloween happened to be my 40th birthday.
Amelia ONLY wanted to discuss Halloween and how many sleeps till the big day arrived.
Tom thought "mum's birthday" was more important!
She researched costumes and where we would be trick or treating.
In the days prior she had me shopping for all of the costume pieces!
We have changed Tom's medical care team and are extremely happy with who is now looking after him.
The relationship he has with Amelia is now both positive and negative..... (negative for parenting!)
They are SO close and get along SO well that it can be difficult to separate them at bedtime.
(GET OUT OF HER BED TOM AND GET INTO YOURS!)
Tom ALWAYS chooses to make Amelia laugh hysterically when I need to get her dressed each day.
Seriously Tom? Right now? Could you not have waited ??!!
On Halloween, Tom emerged from every house and ran up to Amelia "Here I got this for you. I saw your favorite chocolate in their bowl. I told them that you are in a wheelchair and that I needed to get it for you".
No words for the type of person he is becoming.
Finally......
We lost another A-T child today.
Her name was Liv and she was only 13 years old.
13.
Amelia is 11.
Liv had the flu last week and ended up in hospital.
She died 24 hours later.
Having a child with an illness like Amelia's is a very lonely path.
Friends come and go.
But no matter how many friends you have, we are still the parents of an amazing little girl called Amelia.
We are the only ones who nurse, care for and watch the decline......
We see others battle with their own A-T children online.
Every single day we watch and do what no parent should for a child Amelia's age.
We watch and wait for the future.
Today is too close to home.
It reminds us of what will occur in our future.
It reminds us of how it can happen tomorrow.
Keeping sick children and adults away from Amelia is paramount.
I have seen children at Amelia's school that are sick.
A school that has many children with "a life threatening illness".
The parents STILL send them in sick.
When I see these children in Amelia's class, I take her home.
I am not ready to say the final goodbye.
I have shed so many tears for this family in America today
xxx
Halloween.
Sunday, 12 October 2014
Role reversal - reversed
Hello everyone.
Tomorrow is the start of "role reversal - reversed".
Scott begins full time work again.
His best friend has been able to get him a position at the place where Scott originally got him a position.
I am so proud of the effort and achievement he had through being an "at home dad".
The kids have loved having him at home and will need some adjusting to get used to having him gone again.
One example is icecream.
Scott regularly gives the kids ice cream after dinner.
I don't.
The other night while watching TV, I announced "shower and bedtime next ad".
"But I haven't had ice cream yet" Miss Amelia said.
"You do not need ice cream tonight Amelia. We are not going to have it" I said.
As I walked Amelia down to the shower, she repeatedly said "You have hurt my heart".
In the shower she said "You have broken my heart".
She said it over and over while looking at me with "puppy dog eyes".
Scott dried her, put her PJ's on and put her to bed.
I went in to say goodnight.......... with sticky tape.
I started pulling strips off.
I handed them to her and said "these are for your heart".
She looked at me with disgust!
This weekend Scott and I went away to the city.
It had been planned for months.
The original plans were that Amelia was going away on a camp with Yooralla and Tom was going to mum and dads.
My dad went into hospital last week with an unknown condition.
7 days later it is still unknown.
They could not have Tom obviously, so plans were made for him to go to someones house that we happily assist regularly.
We had an awesome Saturday afternoon and night as a "couple".
Yummy cocktails (for me!) and delicious dinner.
Something that we never get to do.
It was AWESOME.
The weekend was cut short on the Sunday but we still had a great time.
Tomorrow we begin another new stage.
Wish us luck.
(If you have been invited to my 40th and have not replied then please do so!)
xxx
Tomorrow is the start of "role reversal - reversed".
Scott begins full time work again.
His best friend has been able to get him a position at the place where Scott originally got him a position.
I am so proud of the effort and achievement he had through being an "at home dad".
The kids have loved having him at home and will need some adjusting to get used to having him gone again.
One example is icecream.
Scott regularly gives the kids ice cream after dinner.
I don't.
The other night while watching TV, I announced "shower and bedtime next ad".
"But I haven't had ice cream yet" Miss Amelia said.
"You do not need ice cream tonight Amelia. We are not going to have it" I said.
As I walked Amelia down to the shower, she repeatedly said "You have hurt my heart".
In the shower she said "You have broken my heart".
She said it over and over while looking at me with "puppy dog eyes".
Scott dried her, put her PJ's on and put her to bed.
I went in to say goodnight.......... with sticky tape.
I started pulling strips off.
I handed them to her and said "these are for your heart".
She looked at me with disgust!
This weekend Scott and I went away to the city.
It had been planned for months.
The original plans were that Amelia was going away on a camp with Yooralla and Tom was going to mum and dads.
My dad went into hospital last week with an unknown condition.
7 days later it is still unknown.
They could not have Tom obviously, so plans were made for him to go to someones house that we happily assist regularly.
We had an awesome Saturday afternoon and night as a "couple".
Yummy cocktails (for me!) and delicious dinner.
Something that we never get to do.
It was AWESOME.
The weekend was cut short on the Sunday but we still had a great time.
Tomorrow we begin another new stage.
Wish us luck.
(If you have been invited to my 40th and have not replied then please do so!)
xxx
Saturday, 27 September 2014
No title is appropriate for this one.
Hello!
(this entry was a work in progress over 3 weeks, so bare with me)
After a very tumultuous year, I arrive to you in a much happier place.
After many tears I came to the decision to resign from my teaching position.
I battled, tried different approaches, tried to settle on accepting negativity and defending myself when it really was not needed.... ALL YEAR.
Kindergarten Teaching is no longer just "teaching children" and working with the child's family.
It is no longer just using your knowledge through a teaching degree and constantly updating with Professional development courses and informal meetings.
It is no longer just keeping detailed records and preparing the child for formal school entry.
It is no longer just about having FUN.
The new style Kindergarten teaching is now also about office politics.
It is about an industry believing they are part of the "corporate world" when they most definitely are not.
The extra hours that have always been done by a "good teacher" are now expected due to the workload etc etc etc etc.
It is admin, staff meetings and staff communication books where people complain about coffee mugs not being washed.
It is pedantic crap that I can no longer comprehend.
It is coming home at least 20 times over a 9 month period because people are so mean.
The final point of my story here is, I was given a "difficult centre" with "difficult management" and combined with the above, took so much day time and evening hours and caused SO many tears from nasty people that I could do it no longer.
I am incredibly upset about the children and parents I have left behind.
To be part of such an important and personal part of a child's life is an honour.
Children relying on your protection during the time they spend with you, I have had to travel through the pathway of "failure" to come out the other side this past 2 weeks. ( now 4 weeks)
I find that I am reminding myself of the friends I have lost in the last few years and questioning the person I may have become without realising.
How can so many people.... (7)..... grow to dislike me so much over the last few years ???
I am not allowed to return to say goodbye to the kids that I worked for.
That hurts the most.
I resigned.
I did nothing wrong.
Anyway, enough crap about me........
Amelia is awesome but FULL of attitude!
Comments like ......
"So bad, so sad" are heard from her.
When we lost the Internet the other night, Tom started having a hissy fit.
Amelia threw her hands up in the air and said "It is the end of the world. Our life is over!" while laughing.
Scott and I could not stop laughing.
Yooralla have sent her an email inviting her to attend various programs on their "school holiday program".
(please read my previous blog on my strong objection to other carers looking after her).
After reading all the activities out to Amelia 2 weeks ago, she strongly chose what she would like to attend.
For 2 WEEKS Amelia has been telling AND ringing people to tell them she is going to The Royal Melbourne Show next week.
Our poor deprived children have never been.
(Amelia has since been and LOVED it. She has also attended the production of "Annie" and gone rock climbing. Next week she will have a "reptile encounter" and go to a trampoline warehouse).
I am very proud of her.
She asked to participate in activities outside of our family and we listened.
She wanted some kind of independence and we listened.
We have built a trusting relationship with Yooralla and therefore I am proud of us.
I am known as the "overprotective parent" and I am ok with that.
Today we sit and watch the AFL Grand Final as a family unit.
Outings are limited now........
I do not know why.
Have I / we changed that much to lose so many friends......
To struggle so much with nasty people at work?
I do not know anymore.
I will leave you with Part 2 of a conversation recently in our house......
AMELIA : "Mum? Will I be able to walk when I am an adult?
ME : "No Amelia". (me crying). "You wont be able to".
AMELIA : "Thats ok. I thought that. I think about it lots".
ME : "I understand that you would. If you have any questions, you can always ask us sweety".
TOM : "Dont worry Amelia. When we grow up, you will live with me. I will look after you".
I had to walk away and sob.
xxx
(this entry was a work in progress over 3 weeks, so bare with me)
After a very tumultuous year, I arrive to you in a much happier place.
After many tears I came to the decision to resign from my teaching position.
I battled, tried different approaches, tried to settle on accepting negativity and defending myself when it really was not needed.... ALL YEAR.
Kindergarten Teaching is no longer just "teaching children" and working with the child's family.
It is no longer just using your knowledge through a teaching degree and constantly updating with Professional development courses and informal meetings.
It is no longer just keeping detailed records and preparing the child for formal school entry.
It is no longer just about having FUN.
The new style Kindergarten teaching is now also about office politics.
It is about an industry believing they are part of the "corporate world" when they most definitely are not.
The extra hours that have always been done by a "good teacher" are now expected due to the workload etc etc etc etc.
It is admin, staff meetings and staff communication books where people complain about coffee mugs not being washed.
It is pedantic crap that I can no longer comprehend.
It is coming home at least 20 times over a 9 month period because people are so mean.
The final point of my story here is, I was given a "difficult centre" with "difficult management" and combined with the above, took so much day time and evening hours and caused SO many tears from nasty people that I could do it no longer.
I am incredibly upset about the children and parents I have left behind.
To be part of such an important and personal part of a child's life is an honour.
Children relying on your protection during the time they spend with you, I have had to travel through the pathway of "failure" to come out the other side this past 2 weeks. ( now 4 weeks)
I find that I am reminding myself of the friends I have lost in the last few years and questioning the person I may have become without realising.
How can so many people.... (7)..... grow to dislike me so much over the last few years ???
I am not allowed to return to say goodbye to the kids that I worked for.
That hurts the most.
I resigned.
I did nothing wrong.
Anyway, enough crap about me........
Amelia is awesome but FULL of attitude!
Comments like ......
"So bad, so sad" are heard from her.
When we lost the Internet the other night, Tom started having a hissy fit.
Amelia threw her hands up in the air and said "It is the end of the world. Our life is over!" while laughing.
Scott and I could not stop laughing.
Yooralla have sent her an email inviting her to attend various programs on their "school holiday program".
(please read my previous blog on my strong objection to other carers looking after her).
After reading all the activities out to Amelia 2 weeks ago, she strongly chose what she would like to attend.
For 2 WEEKS Amelia has been telling AND ringing people to tell them she is going to The Royal Melbourne Show next week.
Our poor deprived children have never been.
(Amelia has since been and LOVED it. She has also attended the production of "Annie" and gone rock climbing. Next week she will have a "reptile encounter" and go to a trampoline warehouse).
I am very proud of her.
She asked to participate in activities outside of our family and we listened.
She wanted some kind of independence and we listened.
We have built a trusting relationship with Yooralla and therefore I am proud of us.
I am known as the "overprotective parent" and I am ok with that.
Today we sit and watch the AFL Grand Final as a family unit.
Outings are limited now........
I do not know why.
Have I / we changed that much to lose so many friends......
To struggle so much with nasty people at work?
I do not know anymore.
I will leave you with Part 2 of a conversation recently in our house......
AMELIA : "Mum? Will I be able to walk when I am an adult?
ME : "No Amelia". (me crying). "You wont be able to".
AMELIA : "Thats ok. I thought that. I think about it lots".
ME : "I understand that you would. If you have any questions, you can always ask us sweety".
TOM : "Dont worry Amelia. When we grow up, you will live with me. I will look after you".
I had to walk away and sob.
xxx
Wednesday, 27 August 2014
Miss Amelia Update
Hello people far and wide.
Thought I may need to focus on a blog about Amelia for once!
Amelia is doing well at the moment.
We received the results back from the blood tests from a few months ago.
You may remember her having to have them because SCOTT PROMISED HER A $90 GIFT IF SHE DID IT !!!!
Anyway the tests results came back "normal".
That is excellent.
A-T can cause or create horrible things to a child's internal organs.
The threat of cancer (1000 times more likely than a non A-T child) damage to the liver, kidneys and lungs are all a constant concern.
We were very relieved to hear that she is fine for now.
We have also started seeing more of a "new"doctor at our local medical centre.
He is very sweet and we are discovering very thorough.
He has explained that he has spent time researching Ataxia Telangiectasia.
The last time Amelia saw him, he spoke to Amelia so beautifully and was obviously holding back tears in his eyes.
We saw him this time because Amelia vomits after waking up about 3 mornings out of 7.
We wanted to check whether it was something to do with an internal organ that we were unaware of.
He decided it was anxiety.
Even though she is still vomiting, we are all more comfortable knowing that it is just as Amelia calls it "nervous about the day ahead".
I visited this doctor on a different occasion for something and we got onto the subject of his baby daughter having an ailment that could be life threatening.
After some discussion, I discovered it was because she has a rather large birthmark called a "giant hairy nevus".
Disgusting name really.
Tom has one too though.
While trying to hide my panic I questioned the life threatening part.
He explained it can become cancerous if it sees the sun.
I breathed a sigh of relief then because Tom's is on his butt.
Tom will now be instructed no skinny dipping FOR LIFE.
This doctor then chose to research for any link between the birthmark (cannot call it THAT name!) and A-T.
There is one.
I can now be pretty sure that even though Tom obviously does not have A-T, he carries the gene and therefore may pass it on to his own children in the future, as Scott and I have done to poor Amelia.
Glad we have found this man.
Amelia is coming home exhausted sometimes from school.
Her biggest symptom is fatigue so it is understandable.
This year her teachers are taking her out of her chair a lot.
She is being placed on special sitting machines to stretch her thighs.
She is being placed on her tummy to strengthen her arms.
She regularly uses a walker that she is strapped into (we were shocked to learn that she literally does laps of the school with great excitement).
At a recent "school games day" she was in a race in the walker. Apparently she was incredibly competitive and once the race started virtually ran so she could win!
Amelia is being challenged to spell, read, type on a computer and participate in craft activities (amongst other things).
There is also the swimming class most Tuesdays.
After a rather difficult year for most of us, Amelia is going through a "cheeky" stage.
She is normally quite subdued when outside the home and when returning home on the bus the other night the bus driver got out his drivers door and said "Amelia has been very entertaining on the drive home. I have never seen her like this!"
As he opened the back door for Amelia to come down the lift, she is loudly laughing and singing "Happy Birthday" to no one.
The driver and I wondered whether there had been some kind of "happy hour" at school that day!
Her sense of humour is shining at the moment and we are all loving it.
Every night on our way to bed she calls out "CONGA". Tom comes running from wherever and stands in front of her.
Do you know how hard it is to fully support her while all 3 of us do the conga to her bedroom?!
Besides going to school she does not really socialise with any other children anymore.
Tom is all that she has.
They have an amazing bond.
They both adore each other.
I do not know how to change the social side of things because I see children struggling to know what to say and do when around her.
A thought that has also crossed Scott and my minds recently is how Tom is going to be when he finds out Amelia's fate with A-T.
If we leave it until his teenage years then he may turn against us.
He may become angry that we did not tell him sooner.
But I am also not ready to watch him fall apart with this horrible knowledge.
Amelia has many fears and worries now.
She cannot handle loud noises and gets very upset if she is startled by one.
We cannot mention anything "concerning" about Tom in front of her, because she then excessively worries about him. It can be a low diabetes reading (hypo) or the cancellation about something he was looking forward to.
Amelia can no longer handle crowds large or small.
She cannot handle too many people in a room.
Anything can set her off but I am grateful that she knows to ask questions and that is when we know to reassure her.
She has also learnt basic sign language at school (that she then teaches us). If she is unable to talk she can sign it.
Amelia has grown a lot taller and leaner this past 12 months.
She is now as tall as my forehead. So she is about 155cm tall.
Her legs are no longer strong enough to hold her up even with us supporting her so it is very difficult on our backs, but we manage.
So there you go.
Amelia in a nutshell at the moment.
Amelia and our beautiful Scamp
The ipad Queen
Something was apparently hysterical
Art class (which my parents friend will not let us pay for)
Tom and I at junior footy the day I had to be the umpire !!!
Love these kids.
xxx
Thought I may need to focus on a blog about Amelia for once!
Amelia is doing well at the moment.
We received the results back from the blood tests from a few months ago.
You may remember her having to have them because SCOTT PROMISED HER A $90 GIFT IF SHE DID IT !!!!
Anyway the tests results came back "normal".
That is excellent.
A-T can cause or create horrible things to a child's internal organs.
The threat of cancer (1000 times more likely than a non A-T child) damage to the liver, kidneys and lungs are all a constant concern.
We were very relieved to hear that she is fine for now.
We have also started seeing more of a "new"doctor at our local medical centre.
He is very sweet and we are discovering very thorough.
He has explained that he has spent time researching Ataxia Telangiectasia.
The last time Amelia saw him, he spoke to Amelia so beautifully and was obviously holding back tears in his eyes.
We saw him this time because Amelia vomits after waking up about 3 mornings out of 7.
We wanted to check whether it was something to do with an internal organ that we were unaware of.
He decided it was anxiety.
Even though she is still vomiting, we are all more comfortable knowing that it is just as Amelia calls it "nervous about the day ahead".
I visited this doctor on a different occasion for something and we got onto the subject of his baby daughter having an ailment that could be life threatening.
After some discussion, I discovered it was because she has a rather large birthmark called a "giant hairy nevus".
Disgusting name really.
Tom has one too though.
While trying to hide my panic I questioned the life threatening part.
He explained it can become cancerous if it sees the sun.
I breathed a sigh of relief then because Tom's is on his butt.
Tom will now be instructed no skinny dipping FOR LIFE.
This doctor then chose to research for any link between the birthmark (cannot call it THAT name!) and A-T.
There is one.
I can now be pretty sure that even though Tom obviously does not have A-T, he carries the gene and therefore may pass it on to his own children in the future, as Scott and I have done to poor Amelia.
Glad we have found this man.
Amelia is coming home exhausted sometimes from school.
Her biggest symptom is fatigue so it is understandable.
This year her teachers are taking her out of her chair a lot.
She is being placed on special sitting machines to stretch her thighs.
She is being placed on her tummy to strengthen her arms.
She regularly uses a walker that she is strapped into (we were shocked to learn that she literally does laps of the school with great excitement).
At a recent "school games day" she was in a race in the walker. Apparently she was incredibly competitive and once the race started virtually ran so she could win!
Amelia is being challenged to spell, read, type on a computer and participate in craft activities (amongst other things).
There is also the swimming class most Tuesdays.
After a rather difficult year for most of us, Amelia is going through a "cheeky" stage.
She is normally quite subdued when outside the home and when returning home on the bus the other night the bus driver got out his drivers door and said "Amelia has been very entertaining on the drive home. I have never seen her like this!"
As he opened the back door for Amelia to come down the lift, she is loudly laughing and singing "Happy Birthday" to no one.
The driver and I wondered whether there had been some kind of "happy hour" at school that day!
Her sense of humour is shining at the moment and we are all loving it.
Every night on our way to bed she calls out "CONGA". Tom comes running from wherever and stands in front of her.
Do you know how hard it is to fully support her while all 3 of us do the conga to her bedroom?!
Besides going to school she does not really socialise with any other children anymore.
Tom is all that she has.
They have an amazing bond.
They both adore each other.
I do not know how to change the social side of things because I see children struggling to know what to say and do when around her.
A thought that has also crossed Scott and my minds recently is how Tom is going to be when he finds out Amelia's fate with A-T.
If we leave it until his teenage years then he may turn against us.
He may become angry that we did not tell him sooner.
But I am also not ready to watch him fall apart with this horrible knowledge.
Amelia has many fears and worries now.
She cannot handle loud noises and gets very upset if she is startled by one.
We cannot mention anything "concerning" about Tom in front of her, because she then excessively worries about him. It can be a low diabetes reading (hypo) or the cancellation about something he was looking forward to.
Amelia can no longer handle crowds large or small.
She cannot handle too many people in a room.
Anything can set her off but I am grateful that she knows to ask questions and that is when we know to reassure her.
She has also learnt basic sign language at school (that she then teaches us). If she is unable to talk she can sign it.
Amelia has grown a lot taller and leaner this past 12 months.
She is now as tall as my forehead. So she is about 155cm tall.
Her legs are no longer strong enough to hold her up even with us supporting her so it is very difficult on our backs, but we manage.
So there you go.
Amelia in a nutshell at the moment.
Love these kids.
xxx
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