Dear Everyone,
Tomorrow 2016 ends.
Thank you.
Thank you for the messages, love and support when I was sitting in Royal Children's Hospital, petrified of losing Amelia sooner than any of us had predicted.
Thank you for supporting our whole family in what has been a difficult and emotionally challenging year from multiple directions.
Thank you for your friendship.
It has not gone unnoticed and is definitely appreciated to beyond the point any of you would imagine.
Thank you for being there.
Amanda
xxx
P.S.
This is one of the songs that got Amelia and I through the hospital stay.
Thank you for making us feel this way.
https://www.youtube.com/watch?v=bwB9EMpW8eY
Friday 30 December 2016
Friday 23 December 2016
End of 2016
Hello everyone.
Feeling quite reflective tonight.
Julia's funeral was today and it was beautiful.
It is the end of what has been a difficult year full of emotions and heartache, but tonight I want to post about Amelia.
She is doing SO well.
Post operation, post cancer and post hospital she suffered from Post Traumatic Stress.
She hated the world, she hated her life and she hated anyone and everyone.
It was 24 hours a day, 7 days a week for months.
It was really hard to look after her and live with her.
For Scott and I, we would regularly debrief once the kids had gone to bed.
One night Scott asked me "How do we pick ourselves up and get back to being happy?".
"Feed off Tom" I answered. "His love and enthusiasm of life will get us through".
And it did and it has.
Amelia finally got back to see HER horse at Riding For the Disabled.
That first day was quietly magical.
Holly the horse actually licked and appeared to be kissing her.
Amelia's smile and the very beautiful connection between the two of them was amazing to watch.
I came home to Scott and explained how I had seen a small snippet of the old Amelia.
Animals have always brought out happiness in Amelia so we began moving our focus and conversations towards our pets a lot more.
The laughter that brought, surrounding the animals personalities, was another help.
Music.
Amelia has what she now calls her "Inspiring music".
We put it on loud and proud.
Maltesers.
I have taught her "emotional eating" and we now regularly eat them and talk about how shit things can be.
Shopping.
Amelia is a shopaholic but she now has a 2 week time limit after 1 outing before we go again.
She thinks she is funny to now ring Nana and say "We are going shopping on ..... day" so Nana can join her in hassling me to go! (Nana can no longer drive).
Amelia's school.
I requested a meeting soon after the hospital stay so I could explain what she had gone through, her limitations, anxiety and PTSD (even though staff members had visited us regularly).
Amelia demanded to come because part of her PTSD was that you DO NOT discuss the cancer or hospital visit.
Everyone told me she had lost even more control of her life and to let her go.
Give her some control back.
The 7 staff members in the meeting were amazing.
They explained the importance of Amelia telling them what, when, where and why.
She was in control.
Relay for life was a massive step forward for Amelia.
(A cancer fundraiser where people join a team and share walking from 4pm Saturday-11am Sunday).
Doing the first lap, the Survivors lap, was huge for her.
She even demanded to come to the planning/committee meetings.
Seeing her face at being the leader of the final lap helped me truly believe OUR Amelia was coming back to us.
Then began the excitement of little things.......
Birthdays, her school Ball and now Christmas.
We now speak of "the positives" on a regular basis and I can say Amelia is truly back.
Her quick wit and humour has us all in hysterics again.
Her empathy for others has also returned.
She insisted on buying Meredith a gift this week for her first Christmas without 6 year old BJ.
She knew what she wanted and spent her own money.
Yesterday, Amelia said to me "I am so sorry you have had such a horrible year with bad stuff happening Mum".
After a moments silence I said "You know what? I have actually had a really good year. You are still here".
We could have, would have, should have lost Amelia if all of the things that did fall into place in June hadn't happened.
Amelia is still here and for that I am grateful.
Have a wonderful Christmas everyone.
xxx
P.S Can no one say "Next year will be wonderful".
I did last year and set up this blog in anticipation.
"Hope you have a fucked up 2017" will be fine.
Feeling quite reflective tonight.
Julia's funeral was today and it was beautiful.
It is the end of what has been a difficult year full of emotions and heartache, but tonight I want to post about Amelia.
She is doing SO well.
Post operation, post cancer and post hospital she suffered from Post Traumatic Stress.
She hated the world, she hated her life and she hated anyone and everyone.
It was 24 hours a day, 7 days a week for months.
It was really hard to look after her and live with her.
For Scott and I, we would regularly debrief once the kids had gone to bed.
One night Scott asked me "How do we pick ourselves up and get back to being happy?".
"Feed off Tom" I answered. "His love and enthusiasm of life will get us through".
And it did and it has.
Amelia finally got back to see HER horse at Riding For the Disabled.
That first day was quietly magical.
Holly the horse actually licked and appeared to be kissing her.
Amelia's smile and the very beautiful connection between the two of them was amazing to watch.
I came home to Scott and explained how I had seen a small snippet of the old Amelia.
Animals have always brought out happiness in Amelia so we began moving our focus and conversations towards our pets a lot more.
The laughter that brought, surrounding the animals personalities, was another help.
Music.
Amelia has what she now calls her "Inspiring music".
We put it on loud and proud.
Maltesers.
I have taught her "emotional eating" and we now regularly eat them and talk about how shit things can be.
Shopping.
Amelia is a shopaholic but she now has a 2 week time limit after 1 outing before we go again.
She thinks she is funny to now ring Nana and say "We are going shopping on ..... day" so Nana can join her in hassling me to go! (Nana can no longer drive).
Amelia's school.
I requested a meeting soon after the hospital stay so I could explain what she had gone through, her limitations, anxiety and PTSD (even though staff members had visited us regularly).
Amelia demanded to come because part of her PTSD was that you DO NOT discuss the cancer or hospital visit.
Everyone told me she had lost even more control of her life and to let her go.
Give her some control back.
The 7 staff members in the meeting were amazing.
They explained the importance of Amelia telling them what, when, where and why.
She was in control.
Relay for life was a massive step forward for Amelia.
(A cancer fundraiser where people join a team and share walking from 4pm Saturday-11am Sunday).
Doing the first lap, the Survivors lap, was huge for her.
She even demanded to come to the planning/committee meetings.
Seeing her face at being the leader of the final lap helped me truly believe OUR Amelia was coming back to us.
Then began the excitement of little things.......
Birthdays, her school Ball and now Christmas.
We now speak of "the positives" on a regular basis and I can say Amelia is truly back.
Her quick wit and humour has us all in hysterics again.
Her empathy for others has also returned.
She insisted on buying Meredith a gift this week for her first Christmas without 6 year old BJ.
She knew what she wanted and spent her own money.
Yesterday, Amelia said to me "I am so sorry you have had such a horrible year with bad stuff happening Mum".
After a moments silence I said "You know what? I have actually had a really good year. You are still here".
We could have, would have, should have lost Amelia if all of the things that did fall into place in June hadn't happened.
Amelia is still here and for that I am grateful.
Have a wonderful Christmas everyone.
xxx
P.S Can no one say "Next year will be wonderful".
I did last year and set up this blog in anticipation.
"Hope you have a fucked up 2017" will be fine.
Wednesday 21 December 2016
2016
Hello everyone.
Thank you for all of the messages, love and hugs over the last few days.
This year has been what can only be described as horrific.
So much pain and heartache from many around me, that my insides ache.
What began as "minor situations" (compared to what has happened since) has turned into catastrophic.
I am what is described as an "empath".
I listen to peoples stories and heartache and absorb it.
If you think I am being vain or trying to say "I am awesome" ........ please don't!
It is horrible and I honestly wish it did not happen to me.
Scott is used to me coming home, drinking wine and crying my eyes out over "this amazing person who is going through so much".
But this year has seen me absorbing my own daughters pain, stress and fear of dying.
For 3 weeks I did not eat due to her depression as well as my own over the shock of her cancer diagnosis while we were in hospital.
Visitors would come in and tell me off for not eating.
"Why eat when I know I will just vomit from stress" I would say!
3 whole weeks, 24 hours a day of being in the same room as her while she cried, groaned and asked for constant reassurance.
3 whole weeks of wondering if her underlying disease will NOT be the thing that shortens her life. That this malignant tumour would be.
Then my beautiful Meredith lost her 6 year old due to an aggressive brain tumour.
6 months from diagnosis.
6 fucking years old.
That is seriously shit.
And now Julia.
Very rarely have I found a connecting friendship in someone other than Scott.
I found one with Gary, Julia's husband, years ago.
He is someone I can just be "me" with and not worry about judgement.
He is a true friend.
Whether he speaks or not, I absorb his pain.
My heart aches and my emotions are all over the place, but I know that my true friends have my back.
Another friend has just found out her husbands "lump" is NOT cancer.
I could go on, but I won't.
This has been a seriously shit year for so many.
Tonight's blog is more about looking at yourself and those around you.
If a lump was found on your body tomorrow (which is a big possibility).
If you were confronted with possible death in the future, would you look really deeply into yourself and say "I am a good person and am proud of who I am?".
This afternoon I was honoured to be asked to meet the most amazing teenager that has had one single person turn her world against her with his lies.
I hope she listened when I reminded her that she is amazing and people can be judgemental and cruel.
Don't be one of those people.
Make your life amazing.
Have no regrets at the end.
Julia did that.
I am making sure Amelia has that too.
I will also make sure this young girl experiences the goodness that is in life too.
There ARE good people out there.
I truly believe that.
xxx
P.S The link below is MY song to Amelia.
P.P.S I am now adding it to Meredith, Julia, the teenager who has been hurt horribly and the other teenager who is going to help me help her find "the light" again.
Be a good person people.
You have ONE life.
Make it memorable.
xxx (again!)
https://www.youtube.com/watch?v=o2GFx7yrtMg
Thank you for all of the messages, love and hugs over the last few days.
This year has been what can only be described as horrific.
So much pain and heartache from many around me, that my insides ache.
What began as "minor situations" (compared to what has happened since) has turned into catastrophic.
I am what is described as an "empath".
I listen to peoples stories and heartache and absorb it.
If you think I am being vain or trying to say "I am awesome" ........ please don't!
It is horrible and I honestly wish it did not happen to me.
Scott is used to me coming home, drinking wine and crying my eyes out over "this amazing person who is going through so much".
But this year has seen me absorbing my own daughters pain, stress and fear of dying.
For 3 weeks I did not eat due to her depression as well as my own over the shock of her cancer diagnosis while we were in hospital.
Visitors would come in and tell me off for not eating.
"Why eat when I know I will just vomit from stress" I would say!
3 whole weeks, 24 hours a day of being in the same room as her while she cried, groaned and asked for constant reassurance.
3 whole weeks of wondering if her underlying disease will NOT be the thing that shortens her life. That this malignant tumour would be.
Then my beautiful Meredith lost her 6 year old due to an aggressive brain tumour.
6 months from diagnosis.
6 fucking years old.
That is seriously shit.
And now Julia.
Very rarely have I found a connecting friendship in someone other than Scott.
I found one with Gary, Julia's husband, years ago.
He is someone I can just be "me" with and not worry about judgement.
He is a true friend.
Whether he speaks or not, I absorb his pain.
My heart aches and my emotions are all over the place, but I know that my true friends have my back.
Another friend has just found out her husbands "lump" is NOT cancer.
I could go on, but I won't.
This has been a seriously shit year for so many.
Tonight's blog is more about looking at yourself and those around you.
If a lump was found on your body tomorrow (which is a big possibility).
If you were confronted with possible death in the future, would you look really deeply into yourself and say "I am a good person and am proud of who I am?".
This afternoon I was honoured to be asked to meet the most amazing teenager that has had one single person turn her world against her with his lies.
I hope she listened when I reminded her that she is amazing and people can be judgemental and cruel.
Don't be one of those people.
Make your life amazing.
Have no regrets at the end.
Julia did that.
I am making sure Amelia has that too.
I will also make sure this young girl experiences the goodness that is in life too.
There ARE good people out there.
I truly believe that.
xxx
P.S The link below is MY song to Amelia.
P.P.S I am now adding it to Meredith, Julia, the teenager who has been hurt horribly and the other teenager who is going to help me help her find "the light" again.
Be a good person people.
You have ONE life.
Make it memorable.
xxx (again!)
https://www.youtube.com/watch?v=o2GFx7yrtMg
Tuesday 8 November 2016
My Friend Julia
Hi everyone.
I am sitting here numb.
2016 has been a year of such emotional turmoil, my heart is hurting.
I cannot possibly list everything that has happened, so I am going to focus on what is happening right now.
My friend, Julia, has been battling stage 4 cancer for 3 years.
In that time she has changed dramatically for the better.
Julia is definitely a different person than the one I first met.
She has changed her appearance and her outlook on life.
I am the first person that understands what a "terminal illness" will do to someone.
It may not be me that has received it, but when your 13 year old does, it feels like it is yourself.
She has written a book and a blog with an extremely large following.
She has been on 60 minutes.
She won a nationally recognised award for her blog.
We once joked that we both "overshare" and debrief through Facebook WAY too much.
But we also discussed that people do not know our pain.
But people in our position will "drown" in negativity if they don't.
As one of her daughters says "She is famous".
But for those of us that knew her before all this happened.
Before she got the cancer diagnosis.........
She is Julia.
Just Julia.
Just like any one of us.
A mum to 4 little girls, 13 years and under.
A mum to a special needs child.
A wife to an amazing husband.
For the past 3 years we have all watched as she put up THE most fearsome fight against the cancer.
After originally being given 3 months, she has lasted 3 years.
That is phenomenal.
Every goal and milestone she aimed for she reached.
She fought with doctors and specialists to be referred for treatment that she believed would help.
It always helped.
It always gave her more time.
Every person that read her FB posts, blogs and book....she reached.
She touched and connected with them.
She actually saved peoples lives by talking about symptoms and tests people should be requesting.....
NO............ demanding for!
Now it is the end.
She could fight no more.
Our beautiful Julia passed away at 10:15pm on Sunday 18th December 2016.......
Dear Julia,
Thank you.
Thank you for showing me how to be an individual and live my own life.
I may be part of a beautiful family, but I am still me.
I still need to separate myself and strive for my dreams.
My hair and clothes may be a stepping point, but it is also the metal process.
I am and I can be.
I will and I should be.
Recently as you lay there and told me your fears and regrets..........
I cried.
The fear of everything ending is all consuming in such a moment....
I learnt that looking death in the face is so incredibly frightening.
I had to leave the room to fall apart emotionally.
But Julia, you did good in this life.
You have created 4 amazing girls and the foundation you installed in them will be with them forever.
You did so, so, so good.
But your comment "But I am their mum and I am not anymore"..... when you were so sick.....
Yes you are and you always will be.
You will be their mum forever.
No one can replace you.
You started the process and we will make sure it continues.
They will never forget the amazing mum they once had.
The mum that will lives in their hearts and their minds.
The mum that created them.
Thank you for letting me try and do my best to help Gary and the girls in the last 3 months.
Thank you for taking my phone calls to ask your opinion on Christmas gifts for the girls and whether you approved of employing people to come and help in your house.
Gary had the answers, but involving you was paramount.
As you said "I am still fucking alive!".
You were both a partnership and you were not to be secluded.
I regret deeply not helping out sooner, but I promise to make it up to you and Gary now.
I endeavour to be a better friend to those around me in future.
Time lost is paramount in my mind right now.
Gary will be fine.
There are so many of us that are going to make sure of that.
We adore him, so it will be easy.
I cannot imagine what Gary is feeling right now, but I know what "true love" is.
You gave and showed him the love of a person that many never experience in their entire lifetime.
It is a feeling and a memory that will last with him forever.
He will use your "energy" to carry on.
He is an amazing dad and I know he will continue doing the amazing job you both started together.
Scott and I are one of many that are going to support him through this incredible pain.
We both adore him.
You told me recently "God he makes me laugh. He always makes me laugh. But he is so sad now".
He loved you SO much and will continue to make you laugh wherever you are.
I truly believe that.
He is sad because he was losing and just lost the most amazing person that he has ever given his heart to.
It is almost fate that we were at our first Christmas Carol Concert last night.
I thought we would all enjoy it, but as it was our first time, I had an open mind.
ALL of the songs were very suitable for church and not a person that is not religious.
I SO know you were not religious.
Amelia suddenly yelled "THIS IS CRAP!. I DON'T KNOW ANY OF THE SONGS!".
She wanted "Jingle Bells" and "Santa Clause Is Coming To Town"!!!!!!!!!!
You would have laughed as much as we did.
Little, quiet Amelia reacting at such an event.
Thank you Julia for teaching me how to LOVE FIGHT and LIVE.
All those words needs to be separated for their importance,.
Love you xxx
R.I.P. Julia.
Thank you for entering our lives xxx
P.S Don't forget what I said about Amelia.
No better person to be waiting for her xxx
P.P.S I know how much you loved this song.
https://youtu.be/GYMLMj-SibU
Goodbye and I will see you again xxx
I am sitting here numb.
2016 has been a year of such emotional turmoil, my heart is hurting.
I cannot possibly list everything that has happened, so I am going to focus on what is happening right now.
My friend, Julia, has been battling stage 4 cancer for 3 years.
In that time she has changed dramatically for the better.
Julia is definitely a different person than the one I first met.
She has changed her appearance and her outlook on life.
I am the first person that understands what a "terminal illness" will do to someone.
It may not be me that has received it, but when your 13 year old does, it feels like it is yourself.
She has written a book and a blog with an extremely large following.
She has been on 60 minutes.
She won a nationally recognised award for her blog.
We once joked that we both "overshare" and debrief through Facebook WAY too much.
But we also discussed that people do not know our pain.
But people in our position will "drown" in negativity if they don't.
As one of her daughters says "She is famous".
But for those of us that knew her before all this happened.
Before she got the cancer diagnosis.........
She is Julia.
Just Julia.
Just like any one of us.
A mum to 4 little girls, 13 years and under.
A mum to a special needs child.
A wife to an amazing husband.
For the past 3 years we have all watched as she put up THE most fearsome fight against the cancer.
After originally being given 3 months, she has lasted 3 years.
That is phenomenal.
Every goal and milestone she aimed for she reached.
She fought with doctors and specialists to be referred for treatment that she believed would help.
It always helped.
It always gave her more time.
Every person that read her FB posts, blogs and book....she reached.
She touched and connected with them.
She actually saved peoples lives by talking about symptoms and tests people should be requesting.....
NO............ demanding for!
Now it is the end.
She could fight no more.
Our beautiful Julia passed away at 10:15pm on Sunday 18th December 2016.......
Dear Julia,
Thank you.
Thank you for showing me how to be an individual and live my own life.
I may be part of a beautiful family, but I am still me.
I still need to separate myself and strive for my dreams.
My hair and clothes may be a stepping point, but it is also the metal process.
I am and I can be.
I will and I should be.
Recently as you lay there and told me your fears and regrets..........
I cried.
The fear of everything ending is all consuming in such a moment....
I learnt that looking death in the face is so incredibly frightening.
I had to leave the room to fall apart emotionally.
But Julia, you did good in this life.
You have created 4 amazing girls and the foundation you installed in them will be with them forever.
You did so, so, so good.
But your comment "But I am their mum and I am not anymore"..... when you were so sick.....
Yes you are and you always will be.
You will be their mum forever.
No one can replace you.
You started the process and we will make sure it continues.
They will never forget the amazing mum they once had.
The mum that will lives in their hearts and their minds.
The mum that created them.
Thank you for letting me try and do my best to help Gary and the girls in the last 3 months.
Thank you for taking my phone calls to ask your opinion on Christmas gifts for the girls and whether you approved of employing people to come and help in your house.
Gary had the answers, but involving you was paramount.
As you said "I am still fucking alive!".
You were both a partnership and you were not to be secluded.
I regret deeply not helping out sooner, but I promise to make it up to you and Gary now.
I endeavour to be a better friend to those around me in future.
Time lost is paramount in my mind right now.
Gary will be fine.
There are so many of us that are going to make sure of that.
We adore him, so it will be easy.
I cannot imagine what Gary is feeling right now, but I know what "true love" is.
You gave and showed him the love of a person that many never experience in their entire lifetime.
It is a feeling and a memory that will last with him forever.
He will use your "energy" to carry on.
He is an amazing dad and I know he will continue doing the amazing job you both started together.
Scott and I are one of many that are going to support him through this incredible pain.
We both adore him.
You told me recently "God he makes me laugh. He always makes me laugh. But he is so sad now".
He loved you SO much and will continue to make you laugh wherever you are.
I truly believe that.
He is sad because he was losing and just lost the most amazing person that he has ever given his heart to.
It is almost fate that we were at our first Christmas Carol Concert last night.
I thought we would all enjoy it, but as it was our first time, I had an open mind.
ALL of the songs were very suitable for church and not a person that is not religious.
I SO know you were not religious.
Amelia suddenly yelled "THIS IS CRAP!. I DON'T KNOW ANY OF THE SONGS!".
She wanted "Jingle Bells" and "Santa Clause Is Coming To Town"!!!!!!!!!!
You would have laughed as much as we did.
Little, quiet Amelia reacting at such an event.
Thank you Julia for teaching me how to LOVE FIGHT and LIVE.
All those words needs to be separated for their importance,.
Love you xxx
R.I.P. Julia.
Thank you for entering our lives xxx
P.S Don't forget what I said about Amelia.
No better person to be waiting for her xxx
P.P.S I know how much you loved this song.
https://youtu.be/GYMLMj-SibU
Goodbye and I will see you again xxx
Monday 7 November 2016
Emotional Health
Hi Everyone.
As you all may know, this year has been a big year.
Unfortunately it looks like it may get even bigger.
It brings me to address a subject extremely close to my heart.
EMOTIONAL HEALTH.
It is not widely known about or discussed.
Emotional health is all about your "inner being".
It connects self esteem, self worth, feelings and personal growth.
I honestly and truly believe it develops constantly from childhood and continually through adulthood.
I do not think it happened with Scott or myself in childhood and am constantly ensuring it happens with Amelia and Tom......
NOW.
It may be late, but it is happening with Scott and I now and I am seeing the benefits everyday.
EVERY SINGLE DAY.
Talking.
Honesty.
Open conversation.
It connects your social skills, helps school learning and even physical growth.
It can also help a marriage or relationship greatly.
If you are not happy within, nothing else with develop healthy.
Seriously.
Our house is now all about this and it is working.
I honestly and truly believe this.
If you are knowledgeable and talking about issues then it does not spiral into a dilemma.
It begins with a simple "How was your day?'.
And "What happened".
In our case it is also "The doctor said this or that today" and we see where the conversation goes.
As a family.
No distractions.
Honesty.
Just eating dinner.
Amelia and Tom both know that Amelia is going to decline further and will die in the future.
They may not like it, but they have acknowledged it.
I purposely did not say on here "accepted or understood" because that is part of their personal growth in emotional health.
They are not capable of either yet.
It is all about honesty and wording at the stage someone is at.
OR the stage the situation is at.
We have discussed the fact that Amelia is dying with both children individually (and that has been documented on here) BUT I can see where both children have scaled those words back to what they are able to comprehend.
I accept and totally understand that.
BUT Amelia and Tom have also changed dramatically in their behaviour towards one another.
They were always close, but.....
They genuinely listen and acknowledge each other now.
They write letters or say words they would not have said before.
They cuddle and lie in bed together.
They ask to attend outings and events together.
"Can "he/she" go with me?'
It connects to my original motto,
"No regrets at the end".
I can see them doing it, without me suggesting it.
Their "child" minds have grasped it.
The innocence and the reality has connected for them.
Emotional health is ongoing during someone's entire lifetime.
But it is up to the adults to instigate to a child or children everyday
"I am here and I will listen.
It does not matter how small, negative or positive the story is........I am here".
You may have no idea the importance of these simple questions.......
But it will not only mean everything to now, but also in the future.
The small things to a young child are considered HUGE.
Now. Acknowledge them now and show you are listening.
When they grow up, the small things (to possibly them) like drugs, alcohol and mental illness will turn out to be the huge things that they will REALLY need help with.
Be open to when they get home from school.
Be open when you are getting dinner ready together.
Be open to when they are going to bed.....lie down with them if you can.
Encourage them to write their feelings down....... even if they keep it to themselves.
Encourage them to talk, even if it is useless banter.
Laugh and joke with them.
Demonstrate it yourself.
Give it a few weeks and they will join in.
WE are creating their minds for the future and it is SO important.
And when new situations arise, good or bad, TALK.
Love you all xxx
As you all may know, this year has been a big year.
Unfortunately it looks like it may get even bigger.
It brings me to address a subject extremely close to my heart.
EMOTIONAL HEALTH.
It is not widely known about or discussed.
Emotional health is all about your "inner being".
It connects self esteem, self worth, feelings and personal growth.
I honestly and truly believe it develops constantly from childhood and continually through adulthood.
I do not think it happened with Scott or myself in childhood and am constantly ensuring it happens with Amelia and Tom......
NOW.
It may be late, but it is happening with Scott and I now and I am seeing the benefits everyday.
EVERY SINGLE DAY.
Talking.
Honesty.
Open conversation.
It connects your social skills, helps school learning and even physical growth.
It can also help a marriage or relationship greatly.
If you are not happy within, nothing else with develop healthy.
Seriously.
Our house is now all about this and it is working.
I honestly and truly believe this.
If you are knowledgeable and talking about issues then it does not spiral into a dilemma.
It begins with a simple "How was your day?'.
And "What happened".
In our case it is also "The doctor said this or that today" and we see where the conversation goes.
As a family.
No distractions.
Honesty.
Just eating dinner.
Amelia and Tom both know that Amelia is going to decline further and will die in the future.
They may not like it, but they have acknowledged it.
I purposely did not say on here "accepted or understood" because that is part of their personal growth in emotional health.
They are not capable of either yet.
It is all about honesty and wording at the stage someone is at.
OR the stage the situation is at.
We have discussed the fact that Amelia is dying with both children individually (and that has been documented on here) BUT I can see where both children have scaled those words back to what they are able to comprehend.
I accept and totally understand that.
BUT Amelia and Tom have also changed dramatically in their behaviour towards one another.
They were always close, but.....
They genuinely listen and acknowledge each other now.
They write letters or say words they would not have said before.
They cuddle and lie in bed together.
They ask to attend outings and events together.
"Can "he/she" go with me?'
It connects to my original motto,
"No regrets at the end".
I can see them doing it, without me suggesting it.
Their "child" minds have grasped it.
The innocence and the reality has connected for them.
Emotional health is ongoing during someone's entire lifetime.
But it is up to the adults to instigate to a child or children everyday
"I am here and I will listen.
It does not matter how small, negative or positive the story is........I am here".
You may have no idea the importance of these simple questions.......
But it will not only mean everything to now, but also in the future.
The small things to a young child are considered HUGE.
Now. Acknowledge them now and show you are listening.
When they grow up, the small things (to possibly them) like drugs, alcohol and mental illness will turn out to be the huge things that they will REALLY need help with.
Be open to when they get home from school.
Be open when you are getting dinner ready together.
Be open to when they are going to bed.....lie down with them if you can.
Encourage them to write their feelings down....... even if they keep it to themselves.
Encourage them to talk, even if it is useless banter.
Laugh and joke with them.
Demonstrate it yourself.
Give it a few weeks and they will join in.
WE are creating their minds for the future and it is SO important.
And when new situations arise, good or bad, TALK.
Love you all xxx
Wednesday 26 October 2016
Cannot Sleep
Hello.
I cannot sleep.
I currently have a blog that is ongoing because I do not have "enough" information to publish it just yet.
It is not completed to give it enough justification.
Tonight I woke with a horrifying realisation on what is my reality.
I am like a bull at the gate at the moment (sorry if that is not a proper phrase. Scott always tells me that I make up my own phrases!).
Tonight I have awoken in the middle of the night remembering that I have a child that is slowly dying.
I don't know why, but I have.
While preparing for the local council's "hard rubbish" pick up, I have sorted through photo's of the past few decades.
Many of these photo's feature Amelia walking, running and playing next to me or others.
Today I quickly tossed them aside.
But it has really resonated with me tonight.
Amelia refuses to look at them.
I now feed Amelia, toilet her, shower her and have great difficulty understanding her.
But back then?
She was happy, social, friendly and attempted to tackle everything.
She had SO many friends and had a massive social calender.
Now I battle with her anxiety, anger and sadness.
I battle with my own anxiety and depression!
And then there is her brother who is 3 years younger.
What is going to become of him?
When she passes, how is that going to affect him?
They absolutely adore each other and I worry about the life he will lead afterwards.
More cancer scares (which is highly likely) or illnesses that will affect his education and own anxiety.
Tom has the capabilities to "make something" wonderful of himself.
Whether it be entrepreneurial, or just an amazing, caring human being....
I don't really care.
I just do not want him to spiral into mental illness or addiction.
Normal life worries for any parent, hey?
xxx
I cannot sleep.
I currently have a blog that is ongoing because I do not have "enough" information to publish it just yet.
It is not completed to give it enough justification.
Tonight I woke with a horrifying realisation on what is my reality.
I am like a bull at the gate at the moment (sorry if that is not a proper phrase. Scott always tells me that I make up my own phrases!).
Tonight I have awoken in the middle of the night remembering that I have a child that is slowly dying.
I don't know why, but I have.
While preparing for the local council's "hard rubbish" pick up, I have sorted through photo's of the past few decades.
Many of these photo's feature Amelia walking, running and playing next to me or others.
Today I quickly tossed them aside.
But it has really resonated with me tonight.
Amelia refuses to look at them.
I now feed Amelia, toilet her, shower her and have great difficulty understanding her.
But back then?
She was happy, social, friendly and attempted to tackle everything.
She had SO many friends and had a massive social calender.
Now I battle with her anxiety, anger and sadness.
I battle with my own anxiety and depression!
And then there is her brother who is 3 years younger.
What is going to become of him?
When she passes, how is that going to affect him?
They absolutely adore each other and I worry about the life he will lead afterwards.
More cancer scares (which is highly likely) or illnesses that will affect his education and own anxiety.
Tom has the capabilities to "make something" wonderful of himself.
Whether it be entrepreneurial, or just an amazing, caring human being....
I don't really care.
I just do not want him to spiral into mental illness or addiction.
Normal life worries for any parent, hey?
xxx
Friday 7 October 2016
RAW
I am pissed.
I am really fucking pissed off.
(Forward note before you continue reading...... I am fine.
This is all Internal and not being expressed to adored children and husband).
How the hell did Scott and I deserve this life??
We are no longer a loving couple.
We are partners in medical care and exhaustion only.
Amelia has gone so downhill since the operation in so many ways.
We have to do EVERYTHING for her now and it is shit.
In what possible way did we deserve to receive this much pain and pure utter exhaustion in life?
How is it fair that you now have to ask your child to repeat herself at least 3 TIMES so you can try with all your might to understand her?
The A-T would have been enough...
But NO.
Lets throw in cancer as well.........
and Type 1 Diabetes.
Lets give a couple so much worry and heartache and see if we can break them.
I am OVER IT.
Like seriously over it.
The threat of their being more cancer in the future......
More hospital stays....
Longer hospital stays....
Has seriously pissed me off.
What did we do and at what stage to create this future?
This life?
Amelia and I live in each others pocket, so to speak.
Because she has such high anxiety now, she will not leave us for respite.
Scott and I have NO time together.
When the beautiful Kate offers it.....
We SLEEP.
Like seriously?!
The amount of areas in our lives that have changed (meaning Scott and I) because of both Amelia's and Tom's diagnosis's is HUGE.
Some of it is good and some of it is bad.
And then there is Tom's life.
I cannot even possibly list all the ways his life has been affected.
I SO SO SO hope he continues to be the amazing kid that he is already....
But still?!?!
What kid has to help feed his sister and clean her from age 5?!
And Amelia?????
The worst list.
The absolute worst possible fucking list.
I cannot even begin to name what she has said to me and what I have seen her endure.
She is intellectually unaffected by all this.
How would you like strangers wiping your bum?
Who would grant such a miserable, horrible life to such a beautiful, caring child?
I am over it.
I want a 13 year old daughter that goes to the local High School and is having trouble socially.
I don't want a child that is 13 and has to have someone wipe her on the toilet.
I don't want her screaming at me that she wants "a normal life" anymore.
I do not want a child that I know is going to die anytime.... anymore.
It is almost 6 years since the initial diagnosis.
The fact that it was not the end of "horrific news" is ........
well indescribable.
This week I received a phone call from one of the friends lost in the last few years.
It was nasty and she was in "attack mode".
I was proud of myself for choosing to just hang up, rather than attack her back.
No one.
Absolutely NO ONE knows how we live and what we go through.
This is when Scott and I first met.
1990.
How is it fair that we now cannot have a loving relationship?
Why is it fair that we live day to day for our children's health issues?
At what stage did we deserve to be dealt this much pain?
I am really fucking pissed off.
(Forward note before you continue reading...... I am fine.
This is all Internal and not being expressed to adored children and husband).
How the hell did Scott and I deserve this life??
We are no longer a loving couple.
We are partners in medical care and exhaustion only.
Amelia has gone so downhill since the operation in so many ways.
We have to do EVERYTHING for her now and it is shit.
In what possible way did we deserve to receive this much pain and pure utter exhaustion in life?
How is it fair that you now have to ask your child to repeat herself at least 3 TIMES so you can try with all your might to understand her?
The A-T would have been enough...
But NO.
Lets throw in cancer as well.........
and Type 1 Diabetes.
Lets give a couple so much worry and heartache and see if we can break them.
I am OVER IT.
Like seriously over it.
The threat of their being more cancer in the future......
More hospital stays....
Longer hospital stays....
Has seriously pissed me off.
What did we do and at what stage to create this future?
This life?
Amelia and I live in each others pocket, so to speak.
Because she has such high anxiety now, she will not leave us for respite.
Scott and I have NO time together.
When the beautiful Kate offers it.....
We SLEEP.
Like seriously?!
The amount of areas in our lives that have changed (meaning Scott and I) because of both Amelia's and Tom's diagnosis's is HUGE.
Some of it is good and some of it is bad.
And then there is Tom's life.
I cannot even possibly list all the ways his life has been affected.
I SO SO SO hope he continues to be the amazing kid that he is already....
But still?!?!
What kid has to help feed his sister and clean her from age 5?!
And Amelia?????
The worst list.
The absolute worst possible fucking list.
I cannot even begin to name what she has said to me and what I have seen her endure.
She is intellectually unaffected by all this.
How would you like strangers wiping your bum?
Who would grant such a miserable, horrible life to such a beautiful, caring child?
I am over it.
I want a 13 year old daughter that goes to the local High School and is having trouble socially.
I don't want a child that is 13 and has to have someone wipe her on the toilet.
I don't want her screaming at me that she wants "a normal life" anymore.
I do not want a child that I know is going to die anytime.... anymore.
It is almost 6 years since the initial diagnosis.
The fact that it was not the end of "horrific news" is ........
well indescribable.
This week I received a phone call from one of the friends lost in the last few years.
It was nasty and she was in "attack mode".
I was proud of myself for choosing to just hang up, rather than attack her back.
No one.
Absolutely NO ONE knows how we live and what we go through.
This is when Scott and I first met.
1990.
How is it fair that we now cannot have a loving relationship?
Why is it fair that we live day to day for our children's health issues?
At what stage did we deserve to be dealt this much pain?
I will continue with this life.
But I will always question why.
After her funeral, I will look back on this post and want this day again.
To have Amelia is everything.
I must remember that.
xxx
Thursday 6 October 2016
Post Cancer Appointment 1
Hello.
I have still not finished our story from over 3 months ago.
But I will.
I will get there.
Tonight I need to write about what happened yesterday.
What was said yesterday........
Tuesday, Amelia and I arrived in the city.
We had free accommodation for the night due to the 8:30am appointment at our local Royal Children's Hospital the following morning.
It was our first REAL appointment since the shock of finding a HUGE malignant tumour back in June.
At our very small apartment, a lot of TV channels did not work and there was no wifi.
No resturaunts nearby and the weather was torrential rain and extremely strong winds.
Amelia was becoming agitated and had already shown anxiety about the RCH day of appointments for the past 7 days.
I pulled out the cat book.
It is THE cat book of ALL cat books!
Recently Tom and I had chosen a book for her, while looking for books for him.
It has pictures and full descriptions of breeds.
It is cute and quite funny in parts, especially the cats that look like they have had a full on "perm!".
So we read it and we read it.
We read it for well over an hour.
Amelia was happy and affectionate.
Then a phone call came from Amelia's new paediatrition.
I had questioned a week earlier why she had to undergo an x-ray the following day.
A-T kids are almost contagious to cancer and the radiation from a basic x-ray can start the process.
The voicemail said to "get the x-ray. We will explain why tomorrow".
Amelia cried herself to sleep.
For almost 6 years we have had drummed into us NO X-RAY.
She believed the doctors were trying to give her cancer and from 9pm Tuesday night, I was helping them.
Amelia and I lay together in a queens sized bed as she cried herself to sleep.
The effects of the Post Traumatic Stress Disorder from the recent hospital stay.....
The decline in her A-T from all that has occurred recently....
She involuntarily shook.
Her whole body had tremors that shook the whole bed as she fell asleep.
Then it suddenly stopped.
She was asleep.
The next morning Amelia was in an unco-operative mood.
She did not want to drink the water required for the pelvic ultrasound.
She did not want to fast for the abdomen ultrasound.
She was petrified of "getting cancer" from the chest x-ray.
Amelia informs me immediately of her plan to call the 2 doctors we were seeing that day "malaka's".
That is dickhead in Greek.
TO THEIR FACE.
We are not Greek!
This was going to be a looooooong day!
The first ultrasound took 45 minutes.
It was of Amelia's abdomen.
She cried and screamed the WHOLE way through it.
I was on the verge of tears as we went to get her breakfast and to fill her bladder up with more fluid (so they could do the pelvic ultrasound).
The hard love approach of "silent treatment" worked.
She began apologising and saying "it did not really hurt. I just don't want to do it".
I explained to her that them finding cancer again is paramount to me.
"Let's just get through today and hopefully go home cancer free".
Unfortunately the amount of water required for the pelvic exam was huge.
No person would be able to hold it inside of their body for long.
2 hours after their initial appointment, I was begging the reception desk for that damn test!
She was about to burst and I had no change of clothes!
The next ultrasound did hurt.
I could see the muscles bulging on the doctor as they pushed SO hard to get the pictures needed.
Amelia is bruised and in great pain 24 hours later and I can understand why!
3 months ago she had major abdominal surgery.
She is still healing and rebuilding stomach muscles.
Whether it was a good idea or not, I do not know.
As we finally enter the oncologists room (2 hours late) we are rushed through.
He is visibly relieved as he tells us that all scans and x-rays of the morning are totally clear of cancer.
I began questioning him of his obvious relief and why she is having an x-ray when it is so not appropriate for an A-T child.
"Amelia had a MIXED germ cell tumour, not JUST a germ cell tumour.
I would normally order chemo, but because of her A-T and the risk of septic shock, I chose to monitor her instead.
I would normally order a cat scan every 3 months, but because of her A-T, I will happily settle for a chest x-ray".
"Why?" I asked.
"Why her chest?".
"Because she has shown that her body will just create a MIXED cancer on it's own.
Because data shows that much of this MIXED cancer will appear again.
There is a high probability it will appear in the future in the lungs.
That is where it will go next.
There is no operation that time to get rid of it.
It will just be treatment and we have to be careful of the A-T to not treat it hard and aggressive.
We would have to treat it alternatively.
We would be in "no man's land".
AND THAT IS WHY I am now shit scared.
xxx
I have still not finished our story from over 3 months ago.
But I will.
I will get there.
Tonight I need to write about what happened yesterday.
What was said yesterday........
Tuesday, Amelia and I arrived in the city.
We had free accommodation for the night due to the 8:30am appointment at our local Royal Children's Hospital the following morning.
It was our first REAL appointment since the shock of finding a HUGE malignant tumour back in June.
At our very small apartment, a lot of TV channels did not work and there was no wifi.
No resturaunts nearby and the weather was torrential rain and extremely strong winds.
Amelia was becoming agitated and had already shown anxiety about the RCH day of appointments for the past 7 days.
I pulled out the cat book.
It is THE cat book of ALL cat books!
Recently Tom and I had chosen a book for her, while looking for books for him.
It has pictures and full descriptions of breeds.
It is cute and quite funny in parts, especially the cats that look like they have had a full on "perm!".
So we read it and we read it.
We read it for well over an hour.
Amelia was happy and affectionate.
Then a phone call came from Amelia's new paediatrition.
I had questioned a week earlier why she had to undergo an x-ray the following day.
A-T kids are almost contagious to cancer and the radiation from a basic x-ray can start the process.
The voicemail said to "get the x-ray. We will explain why tomorrow".
Amelia cried herself to sleep.
For almost 6 years we have had drummed into us NO X-RAY.
She believed the doctors were trying to give her cancer and from 9pm Tuesday night, I was helping them.
Amelia and I lay together in a queens sized bed as she cried herself to sleep.
The effects of the Post Traumatic Stress Disorder from the recent hospital stay.....
The decline in her A-T from all that has occurred recently....
She involuntarily shook.
Her whole body had tremors that shook the whole bed as she fell asleep.
Then it suddenly stopped.
She was asleep.
The next morning Amelia was in an unco-operative mood.
She did not want to drink the water required for the pelvic ultrasound.
She did not want to fast for the abdomen ultrasound.
She was petrified of "getting cancer" from the chest x-ray.
Amelia informs me immediately of her plan to call the 2 doctors we were seeing that day "malaka's".
That is dickhead in Greek.
TO THEIR FACE.
We are not Greek!
This was going to be a looooooong day!
The first ultrasound took 45 minutes.
It was of Amelia's abdomen.
She cried and screamed the WHOLE way through it.
I was on the verge of tears as we went to get her breakfast and to fill her bladder up with more fluid (so they could do the pelvic ultrasound).
The hard love approach of "silent treatment" worked.
She began apologising and saying "it did not really hurt. I just don't want to do it".
I explained to her that them finding cancer again is paramount to me.
"Let's just get through today and hopefully go home cancer free".
Unfortunately the amount of water required for the pelvic exam was huge.
No person would be able to hold it inside of their body for long.
2 hours after their initial appointment, I was begging the reception desk for that damn test!
She was about to burst and I had no change of clothes!
The next ultrasound did hurt.
I could see the muscles bulging on the doctor as they pushed SO hard to get the pictures needed.
Amelia is bruised and in great pain 24 hours later and I can understand why!
3 months ago she had major abdominal surgery.
She is still healing and rebuilding stomach muscles.
Whether it was a good idea or not, I do not know.
As we finally enter the oncologists room (2 hours late) we are rushed through.
He is visibly relieved as he tells us that all scans and x-rays of the morning are totally clear of cancer.
I began questioning him of his obvious relief and why she is having an x-ray when it is so not appropriate for an A-T child.
"Amelia had a MIXED germ cell tumour, not JUST a germ cell tumour.
I would normally order chemo, but because of her A-T and the risk of septic shock, I chose to monitor her instead.
I would normally order a cat scan every 3 months, but because of her A-T, I will happily settle for a chest x-ray".
"Why?" I asked.
"Why her chest?".
"Because she has shown that her body will just create a MIXED cancer on it's own.
Because data shows that much of this MIXED cancer will appear again.
There is a high probability it will appear in the future in the lungs.
That is where it will go next.
There is no operation that time to get rid of it.
It will just be treatment and we have to be careful of the A-T to not treat it hard and aggressive.
We would have to treat it alternatively.
We would be in "no man's land".
AND THAT IS WHY I am now shit scared.
xxx
Friday 2 September 2016
Our Hell Part 4
Driving home was very surreal.
I was driving Amelia the 1 hour distance for a few days away from the hospital.
She was not better than when I took her in there.
They had not "fixed" her.
The fatigue, vomiting and pain was worse.
The mental damage was the most difficult to help her with.
Amelia was sad.
Very sad.
The personality that we have always known and loved had been consumed by fear.
My hope was that this was only temporary.
The whole drive I was questioning myself about whether this was a good idea.
Amelia really struggled to sit in the passenger seat comfortably.
She barely talked.
I just kept telling myself......
The animals.
They will make her happy.
Tom's Birthday.
She will be happy to be home with him when he wakes up on the Sunday morning.
Unfortunately this was not the case.
From the moment we got home, Amelia got worse.
Amelia spent the weekend lying on the couch.
She was unable to sit upright.
For a child that has refused any daytime "naps" since she was two years old, she spent a lot of the weekend sleeping.
Her interest in food and drink was minimal.
On the first night she woke up crying.
She was running a fever, but was shaking uncontrollably, saying how cold she was.
This would continue many times over the weekend.
It was SO incredibly hard to watch.
It was SO hard as a mum to know that she had something inside of her that was making her feel this way.
I kept reassuring myself that they were taking it out in a few days, but then I began worrying, what if it burst at home?
I rang the hospital on the second day home and they did not appear concerned.
With the acceptance that they are the experts, I told myself everything was fine.
Our front door became a revolving one.
Friends and family came to give her a kiss, give her a hug and kindly give us a meal.
Amelia struggled to converse with some.
On the Sunday, it was Tom's 10th Birthday.
We tried to keep it as normal as possible.
With Amelia still laying on the couch and becoming worse, I organised for friends to come and sit with her so Tom could still play footy and have his birthday party.
Tom played in his footy team in the morning and it was very emotional to see the extent the players, coaches and parents went to in support of Tom.
Everyone knew the worry of the previous fortnight and how emotional Tom was about having our family separated.
The players were a pink stripe on the protective helmets and pink face paint.
Friends, family and the players parents wore pink and came to show their support.
When Scott and I were standing beside the ground on our own, I said to him
"I think I am going to have to take her back before Tuesday".
"I know" he said.
After the game we returned home and I rang the hospital again.
I spoke to one of our doctors and explained what she had been like.
We ended up deciding that it was best to take her back in to be "checked" and we may as well stay for Tuesdays operation.
"Can I go to my son's birthday party first please?" I asked her.
"Yes" she responded. "But come straight after".
I packed our suitcase before taking Tom, with Scott, to meet his friends.
The birthday party was fantastic and I tried to just focus on Tom and his happiness.
When we got home, we put Amelia and our bags in the car.
The emotions were raw, because we all knew that we would not be home now until after Amelia had recovered from the operation.
Scott and I had been told the risks of the operation.
We needed to get through Tuesday first before we began worrying about the test results being cancer and what that would entail.
As we all hugged and kissed goodbye, Tom started begging to come with us.
He climbed into the passenger seat and wrapped Amelia up in the tightest hug and would not let go.
Watching Scott pull him off her was one of the most emotional things I have ever witnessed.
As Scott held Tom while he sobbed at home, Amelia cried the whole 1 hour drive back to the hospital.
xxx
I was driving Amelia the 1 hour distance for a few days away from the hospital.
She was not better than when I took her in there.
They had not "fixed" her.
The fatigue, vomiting and pain was worse.
The mental damage was the most difficult to help her with.
Amelia was sad.
Very sad.
The personality that we have always known and loved had been consumed by fear.
My hope was that this was only temporary.
The whole drive I was questioning myself about whether this was a good idea.
Amelia really struggled to sit in the passenger seat comfortably.
She barely talked.
I just kept telling myself......
The animals.
They will make her happy.
Tom's Birthday.
She will be happy to be home with him when he wakes up on the Sunday morning.
Unfortunately this was not the case.
From the moment we got home, Amelia got worse.
Amelia spent the weekend lying on the couch.
She was unable to sit upright.
For a child that has refused any daytime "naps" since she was two years old, she spent a lot of the weekend sleeping.
Her interest in food and drink was minimal.
On the first night she woke up crying.
She was running a fever, but was shaking uncontrollably, saying how cold she was.
This would continue many times over the weekend.
It was SO incredibly hard to watch.
It was SO hard as a mum to know that she had something inside of her that was making her feel this way.
I kept reassuring myself that they were taking it out in a few days, but then I began worrying, what if it burst at home?
I rang the hospital on the second day home and they did not appear concerned.
With the acceptance that they are the experts, I told myself everything was fine.
Our front door became a revolving one.
Friends and family came to give her a kiss, give her a hug and kindly give us a meal.
Amelia struggled to converse with some.
On the Sunday, it was Tom's 10th Birthday.
We tried to keep it as normal as possible.
With Amelia still laying on the couch and becoming worse, I organised for friends to come and sit with her so Tom could still play footy and have his birthday party.
Tom played in his footy team in the morning and it was very emotional to see the extent the players, coaches and parents went to in support of Tom.
Everyone knew the worry of the previous fortnight and how emotional Tom was about having our family separated.
The players were a pink stripe on the protective helmets and pink face paint.
Friends, family and the players parents wore pink and came to show their support.
When Scott and I were standing beside the ground on our own, I said to him
"I think I am going to have to take her back before Tuesday".
"I know" he said.
After the game we returned home and I rang the hospital again.
I spoke to one of our doctors and explained what she had been like.
We ended up deciding that it was best to take her back in to be "checked" and we may as well stay for Tuesdays operation.
"Can I go to my son's birthday party first please?" I asked her.
"Yes" she responded. "But come straight after".
I packed our suitcase before taking Tom, with Scott, to meet his friends.
The birthday party was fantastic and I tried to just focus on Tom and his happiness.
When we got home, we put Amelia and our bags in the car.
The emotions were raw, because we all knew that we would not be home now until after Amelia had recovered from the operation.
Scott and I had been told the risks of the operation.
We needed to get through Tuesday first before we began worrying about the test results being cancer and what that would entail.
As we all hugged and kissed goodbye, Tom started begging to come with us.
He climbed into the passenger seat and wrapped Amelia up in the tightest hug and would not let go.
Watching Scott pull him off her was one of the most emotional things I have ever witnessed.
As Scott held Tom while he sobbed at home, Amelia cried the whole 1 hour drive back to the hospital.
xxx
Sunday 24 July 2016
Our Hell Part 3
"I don't like you" Amelia said through gritted teeth.
She was saying it to the surgeon that would be removing the "mass".
The surgeon had been explaining to my parents and I what she knew from the MRI of Amelia's abdomen.
She was explaining to all of us what her plans were in the surgery.
Amelia had requested that all discussions with doctors be held in front of her.
This was the first sign that it was no longer a good idea.
Amelia is never nasty and has never told someone she doesn't like them.
The enormity of this situation was too much for her to process, especially when a doctor is explaining what would happen after she was cut open.
Amelia was overwhelmed and becoming distressed.
We had to start remembering that she is only 13 years old.
We entered another room to be told that the mass needed to be removed whole.
If it was malignant, there was to be "no spillage", nothing left behind.
The cut would be substantial due to the size of the mass and the fact it needed to not be damaged upon it's removal.
It was to just be lifted out.
At this stage at least one ovary would also be taken.
The surgeon wanted to avoid taking the second one, if it showed no sign of being joined or affected.
A child of Amelia's age needs at least one ovary to assist with overall growth and development.
Hormones, female growth and healthy development during the teenage years.
If she did need to take the second ovary, Amelia would need to take HRT for the rest of her life.
The appendix was going to be removed.
The MRI showed it was damaged from the mass.
It was either joined, affected or had just been pushed so hard by this foreign entity.
It was also causing the pain Amelia complained of in her right side.
Biopsies would be taken of all surrounding organs and "a wash" conducted.
The wash would identify any "foreign cells" floating around.
They were going to try and identify, if it was cancer, where it had spread, if anywhere.
Nothing will be known till after the surgery.
There were mixed opinions between Gynocology and Oncology about how long it would take to find out whether the mass was malignant and, if it was, if it had spread.
Gynocology said they have had patients wait up to two weeks for results.
Oncology said three days.
On the sixth day of admission, it was decided we should go home until the operation.
It was five days until they would operate.
Amelia was so depressed and anxious, they thought a few days leave may pick up her spirits.
It was Tom's 10th birthday on the third day and it was hard to imagine us not being at home to help him celebrate reaching double digits.
I also knew it was important for Tom's emotional wellbeing that we be there for him on the day.
A final "discussion" was had outside Amelia's room before we left.
Through the door, I could see Amelia becoming distressed.
I pointed this out to our doctors and said "I need help. I need help getting her through this", but all they could offer us was more tablets.
As I walked back into her room, I pulled up a chair next to her, getting ready to calm her down, yet again.
Amelia was at a stage where she was SO angry and SO frightened.....
I was never going to be successful.
I held her hands and cried many tears as she repeatedly said......
"Why me? Isn't my A-T enough?".
Finally she stopped and said "Why are you crying?"
"Because I am scared" I said.
She stared at me for a while and finally said "Me too. But you are not the one that has to have the operation".
"No. I am not. But you are a part of me, so the pain and worry and being SO incredibly frightened.....I feel too. I am your mum and I have to look after you before, during and after all this. I am hurting watching this happen to you".
We both cried for a long time before I attempted to get her home for a few days.
She was saying it to the surgeon that would be removing the "mass".
The surgeon had been explaining to my parents and I what she knew from the MRI of Amelia's abdomen.
She was explaining to all of us what her plans were in the surgery.
Amelia had requested that all discussions with doctors be held in front of her.
This was the first sign that it was no longer a good idea.
Amelia is never nasty and has never told someone she doesn't like them.
The enormity of this situation was too much for her to process, especially when a doctor is explaining what would happen after she was cut open.
Amelia was overwhelmed and becoming distressed.
We had to start remembering that she is only 13 years old.
We entered another room to be told that the mass needed to be removed whole.
If it was malignant, there was to be "no spillage", nothing left behind.
The cut would be substantial due to the size of the mass and the fact it needed to not be damaged upon it's removal.
It was to just be lifted out.
At this stage at least one ovary would also be taken.
The surgeon wanted to avoid taking the second one, if it showed no sign of being joined or affected.
A child of Amelia's age needs at least one ovary to assist with overall growth and development.
Hormones, female growth and healthy development during the teenage years.
If she did need to take the second ovary, Amelia would need to take HRT for the rest of her life.
The appendix was going to be removed.
The MRI showed it was damaged from the mass.
It was either joined, affected or had just been pushed so hard by this foreign entity.
It was also causing the pain Amelia complained of in her right side.
Biopsies would be taken of all surrounding organs and "a wash" conducted.
The wash would identify any "foreign cells" floating around.
They were going to try and identify, if it was cancer, where it had spread, if anywhere.
Nothing will be known till after the surgery.
There were mixed opinions between Gynocology and Oncology about how long it would take to find out whether the mass was malignant and, if it was, if it had spread.
Gynocology said they have had patients wait up to two weeks for results.
Oncology said three days.
On the sixth day of admission, it was decided we should go home until the operation.
It was five days until they would operate.
Amelia was so depressed and anxious, they thought a few days leave may pick up her spirits.
It was Tom's 10th birthday on the third day and it was hard to imagine us not being at home to help him celebrate reaching double digits.
I also knew it was important for Tom's emotional wellbeing that we be there for him on the day.
A final "discussion" was had outside Amelia's room before we left.
Through the door, I could see Amelia becoming distressed.
I pointed this out to our doctors and said "I need help. I need help getting her through this", but all they could offer us was more tablets.
As I walked back into her room, I pulled up a chair next to her, getting ready to calm her down, yet again.
Amelia was at a stage where she was SO angry and SO frightened.....
I was never going to be successful.
I held her hands and cried many tears as she repeatedly said......
"Why me? Isn't my A-T enough?".
Finally she stopped and said "Why are you crying?"
"Because I am scared" I said.
She stared at me for a while and finally said "Me too. But you are not the one that has to have the operation".
"No. I am not. But you are a part of me, so the pain and worry and being SO incredibly frightened.....I feel too. I am your mum and I have to look after you before, during and after all this. I am hurting watching this happen to you".
We both cried for a long time before I attempted to get her home for a few days.
Thursday 21 July 2016
Our Hell Part 2
As Amelia lay lifeless on the hospital bed from the happy gas, we had to ask.......
"Could it be Cancer?"
"It could be anything. You need to prepare yourselves for anything" the doctor said.
"We need to get you a bed upstairs on a ward".
Scott and I went out the front so Scott could make the long trip home.
Only one parent was allowed to stay.
He had brought his motorbike in and I was worried about him getting home safely.
He was shaking.
Uncontrollably shaking.
"Ring me when you get home please".
I was nervous that he may not make it.
I made him message me when he got home safely.
Back in the hospital room, Amelia was relaxed from the happy gas but anxious.
She wanted to go home.
I started wondering when we would ever get home.
At 1:30am they moved us up to a ward.
The Kelpie ward.
It was for adolescents.
It was spacious and so different from our last stay in December 2010.
This time we were by ourselves.
We slept a few hours before the noise outside our room woke us up.
It was morning time and breakfast was being served and doctors were starting to do their rounds.
A nurse explained the facilities and after a shower, I headed downstairs for what would be the first of many coffees at the café.
Amelia was content watching television.
Gynocology was the first department to come and visit our room.
Two middle aged ladies were very understanding of our concern and our need to be kept "up to date" with anything and everything they were thinking, researching and considering when it came to Amelia.
During the A-T diagnosis in 2010, doctors did not speak to us about what they were "thinking".
It made the actual day of diagnosis so much harder.
We wanted to move with them in their findings, rather than have it smacked into our faces at the end.
On this first day, they explained that the ultrasound showed a high probability of it being joined to at least one ovary.
They said that Amelia would be undergoing more blood tests and an MRI to try and further understand what this "mass" was inside of her.
Now this is where I get a bit lost.
I cannot remember the exact order of words, procedures or what I even did in that first week.
Many parents understand the "auto pilot" mechanism.
Where life suddenly because so stressful, so worrying and there is so much to understand and listen to.......
You shut down a huge part of your brain.
Your life becomes very mechanical, but also extremely focused on the most immediate and the most important.
For me, that was Amelia first and foremost.
Conversing with doctors, asking questions and looking to the next procedure.
It was looking after Amelia's normal daily necessities like showering, toileting and eating.
It was trying to keep her calm (which was near impossible sometimes), distracting her and trying to help her to stop worrying.
She was not sleeping.
She wanted to talk, debrief and talk about her worries at all hours of the night.
She did not want me to leave the room.
I remember Tom crying on FaceTime when he and Amelia saw each other for the first time since we were admitted.
Amelia had the happiest grin from ear to ear to see someone she adores so much and poor Tom just started erratically wiping his eyes, trying to hide it.
Our 10 year old was displaying the fear we were all feeling.
I looked at my dad standing behind him crying.
We were all petrified of what this fucking mass was inside of Amelia.
Scott went to work, looked after the pets, went to visit Tom AND came in to see us.
He was exhausted.
I remember them using "happy gas" to put a canula in Amelia's arm.
I remember the doctors madly researching A-T.
I remember the battle for them to put her under a GA for the MRI of the abdomen area and not force her to try it without (A-T tremors and her hysteria were not going to help her lay totally still).
I remember her going under anaesthetic for the MRI.
I remember her sobbing as they wheeled her into theatre.
I had a friend there and when she had to leave, I remember then walking out of the hospital and feeling myself start shaking.
As I leaned against a tree for support as my legs began to give way........
I finally began crying.
After 90 minutes, I received the call to go to recovery.
Auto pilot kicked in again.
My dad rings while I am making my way there.
He has gastro and can't have Tom.
Ring Scott and he goes home to collect him from school.
Scott and Tom together at home now.
Amelia and I together in hospital.
The next day Oncology arrived at our room and introduced themselves.
"We have joined the team looking after Amelia now".
Ok.
Shit has just got real now.
We are in serious trouble.
xxx
"Could it be Cancer?"
"It could be anything. You need to prepare yourselves for anything" the doctor said.
"We need to get you a bed upstairs on a ward".
Scott and I went out the front so Scott could make the long trip home.
Only one parent was allowed to stay.
He had brought his motorbike in and I was worried about him getting home safely.
He was shaking.
Uncontrollably shaking.
"Ring me when you get home please".
I was nervous that he may not make it.
I made him message me when he got home safely.
Back in the hospital room, Amelia was relaxed from the happy gas but anxious.
She wanted to go home.
I started wondering when we would ever get home.
At 1:30am they moved us up to a ward.
The Kelpie ward.
It was for adolescents.
It was spacious and so different from our last stay in December 2010.
This time we were by ourselves.
We slept a few hours before the noise outside our room woke us up.
It was morning time and breakfast was being served and doctors were starting to do their rounds.
A nurse explained the facilities and after a shower, I headed downstairs for what would be the first of many coffees at the café.
Amelia was content watching television.
Gynocology was the first department to come and visit our room.
Two middle aged ladies were very understanding of our concern and our need to be kept "up to date" with anything and everything they were thinking, researching and considering when it came to Amelia.
During the A-T diagnosis in 2010, doctors did not speak to us about what they were "thinking".
It made the actual day of diagnosis so much harder.
We wanted to move with them in their findings, rather than have it smacked into our faces at the end.
On this first day, they explained that the ultrasound showed a high probability of it being joined to at least one ovary.
They said that Amelia would be undergoing more blood tests and an MRI to try and further understand what this "mass" was inside of her.
Now this is where I get a bit lost.
I cannot remember the exact order of words, procedures or what I even did in that first week.
Many parents understand the "auto pilot" mechanism.
Where life suddenly because so stressful, so worrying and there is so much to understand and listen to.......
You shut down a huge part of your brain.
Your life becomes very mechanical, but also extremely focused on the most immediate and the most important.
For me, that was Amelia first and foremost.
Conversing with doctors, asking questions and looking to the next procedure.
It was looking after Amelia's normal daily necessities like showering, toileting and eating.
It was trying to keep her calm (which was near impossible sometimes), distracting her and trying to help her to stop worrying.
She was not sleeping.
She wanted to talk, debrief and talk about her worries at all hours of the night.
She did not want me to leave the room.
I remember Tom crying on FaceTime when he and Amelia saw each other for the first time since we were admitted.
Amelia had the happiest grin from ear to ear to see someone she adores so much and poor Tom just started erratically wiping his eyes, trying to hide it.
Our 10 year old was displaying the fear we were all feeling.
I looked at my dad standing behind him crying.
We were all petrified of what this fucking mass was inside of Amelia.
Scott went to work, looked after the pets, went to visit Tom AND came in to see us.
He was exhausted.
I remember them using "happy gas" to put a canula in Amelia's arm.
I remember the doctors madly researching A-T.
I remember the battle for them to put her under a GA for the MRI of the abdomen area and not force her to try it without (A-T tremors and her hysteria were not going to help her lay totally still).
I remember her going under anaesthetic for the MRI.
I remember her sobbing as they wheeled her into theatre.
I had a friend there and when she had to leave, I remember then walking out of the hospital and feeling myself start shaking.
As I leaned against a tree for support as my legs began to give way........
I finally began crying.
After 90 minutes, I received the call to go to recovery.
Auto pilot kicked in again.
My dad rings while I am making my way there.
He has gastro and can't have Tom.
Ring Scott and he goes home to collect him from school.
Scott and Tom together at home now.
Amelia and I together in hospital.
The next day Oncology arrived at our room and introduced themselves.
"We have joined the team looking after Amelia now".
Ok.
Shit has just got real now.
We are in serious trouble.
xxx
Saturday 9 July 2016
My beautiful friend Meredith
Before I write Part 2 of what has been our battle in the last few weeks, I need to write about something that is immediate.
Three days before I took Amelia to the Emergency Department at RCH, I received a message from a very dear friend of fine.
I may even say one of my best friend's.
It said that her 6 year olds brain cancer had spread to his spine.
The doctor had given them a prognosis of a few weeks.
I sobbed.
I sobbed uncontrollably.
I sobbed while she messaged me about her plans for him at the end.
I sobbed at the idea that she wanted to build a memorial garden at their home, to scatter his ashes.
She did not see my tears, only my words of support and love.
If I rewind, I jokingly called Meredith Hill "my stalker".
We had both been on the Parent Committee at school together.
We didn't really know each other.
After Amelia was diagnosed with Ataxia Telangiectasia.....
After we had been told to go home and "cherish" Amelia, I chose to drop her at school after the start of school and pick her up before home time.
I was not in the frame of mind to talk or explain.
It was 2010.
BUT she would catch me.
She would hug me.
She had absolutely NO IDEA what was happening to us.
Then she read about it when it was in The Herald Sun, our state wide paper.
She became "a friend" very quickly.
She was very different from the others though.
Meredith didn't want to DO anything like fundraise.......
She just wanted to be there for me and put a smile on Scott, Tom and Amelia and my faces.
She is still here with us.
Many others are not.
In the last 5.5 years, she has organised for flowers to be delivered to Amelia at school for her birthday.
She has seen Melbourne Demon Merchandise available at a market and totally smothered the stall for Tom.
She has sent Tom messages of support and told hime how "awesome" he is.
Meredith has arrived on our doorstep to give Tom a hug or Amelia some encouragement with her disease.
When I was suffering from severe depression, Meredith was the one to BANG on my front door repeatedly until I answered.
She was the one who wrote on Amelia's Project Page on Facebook to write about how inspirational I am to help pull me out of it.....
SHE IS A TRUE FRIEND.
Meredith is not after gossip or accolades for what she has done.
IT IS HER.
People call me strong, but this woman is an epitome of that word.
When Amelia was admitted to hospital recently, you all saw her comments and her wisdom.
She NEW what was happening to her son and so did I.
But she still wrote about her love and support.
She still spoke of "my girl" and "my boy".
We almost got into an argument on line when I said
"STOP WORRYING ABOUT US. FOCUS ON YOURS.
But that is not Meredith.
She genuinely cares for others.
BJ was diagnosed with an aggressive brain tumour in February.
Normal child to vomiting child.
As easy as that.
After 4 months of not leaving Benjamin's side.
Four months after being diagnosed with an aggressive brain cancer that then spread down his spine.
After 4 months of feeding him through a peg, sitting beside him through horrendous operations.
After 4 months of being EVERYTHING to him....
After him yelling at her and not talking to anyone.
He passed away this morning.........
In her arms.
The optimal place.
He was 6 years old.
After a text message this morning, we are all shattered.
Meredith, my whole family fell apart.
We LOVE you and feel your heartache.
YOU are our hero.
You are the most amazing person to enter our lives.
But you were never to lose a child.
When I met you.... YOU had 3 healthy children.
You were supporting us to lose OURS.
Tom is currently writing you a letter to say what he feels.
It will show you the kind of person you are from a 10 year old.
You have lost a child.
The worst possible thing to EVER happen in life.
You are everything that we would want to be in the same situation.
We will be someday and you will be the person we remember and look up to.
Love you forever and always
xxx
https://www.bing.com/videos/search?q=hero+mariah+carey+youtube&view=detail&mid=CE5B48615F117B978A09CE5B48615F117B978A09&FORM=VIRE
Three days before I took Amelia to the Emergency Department at RCH, I received a message from a very dear friend of fine.
I may even say one of my best friend's.
It said that her 6 year olds brain cancer had spread to his spine.
The doctor had given them a prognosis of a few weeks.
I sobbed.
I sobbed uncontrollably.
I sobbed while she messaged me about her plans for him at the end.
I sobbed at the idea that she wanted to build a memorial garden at their home, to scatter his ashes.
She did not see my tears, only my words of support and love.
If I rewind, I jokingly called Meredith Hill "my stalker".
We had both been on the Parent Committee at school together.
We didn't really know each other.
After Amelia was diagnosed with Ataxia Telangiectasia.....
After we had been told to go home and "cherish" Amelia, I chose to drop her at school after the start of school and pick her up before home time.
I was not in the frame of mind to talk or explain.
It was 2010.
BUT she would catch me.
She would hug me.
She had absolutely NO IDEA what was happening to us.
Then she read about it when it was in The Herald Sun, our state wide paper.
She became "a friend" very quickly.
She was very different from the others though.
Meredith didn't want to DO anything like fundraise.......
She just wanted to be there for me and put a smile on Scott, Tom and Amelia and my faces.
She is still here with us.
Many others are not.
In the last 5.5 years, she has organised for flowers to be delivered to Amelia at school for her birthday.
She has seen Melbourne Demon Merchandise available at a market and totally smothered the stall for Tom.
She has sent Tom messages of support and told hime how "awesome" he is.
Meredith has arrived on our doorstep to give Tom a hug or Amelia some encouragement with her disease.
When I was suffering from severe depression, Meredith was the one to BANG on my front door repeatedly until I answered.
She was the one who wrote on Amelia's Project Page on Facebook to write about how inspirational I am to help pull me out of it.....
SHE IS A TRUE FRIEND.
Meredith is not after gossip or accolades for what she has done.
IT IS HER.
People call me strong, but this woman is an epitome of that word.
When Amelia was admitted to hospital recently, you all saw her comments and her wisdom.
She NEW what was happening to her son and so did I.
But she still wrote about her love and support.
She still spoke of "my girl" and "my boy".
We almost got into an argument on line when I said
"STOP WORRYING ABOUT US. FOCUS ON YOURS.
But that is not Meredith.
She genuinely cares for others.
BJ was diagnosed with an aggressive brain tumour in February.
Normal child to vomiting child.
As easy as that.
After 4 months of not leaving Benjamin's side.
Four months after being diagnosed with an aggressive brain cancer that then spread down his spine.
After 4 months of feeding him through a peg, sitting beside him through horrendous operations.
After 4 months of being EVERYTHING to him....
After him yelling at her and not talking to anyone.
He passed away this morning.........
In her arms.
The optimal place.
He was 6 years old.
After a text message this morning, we are all shattered.
Meredith, my whole family fell apart.
We LOVE you and feel your heartache.
YOU are our hero.
You are the most amazing person to enter our lives.
But you were never to lose a child.
When I met you.... YOU had 3 healthy children.
You were supporting us to lose OURS.
Tom is currently writing you a letter to say what he feels.
It will show you the kind of person you are from a 10 year old.
You have lost a child.
The worst possible thing to EVER happen in life.
You are everything that we would want to be in the same situation.
We will be someday and you will be the person we remember and look up to.
Love you forever and always
xxx
https://www.bing.com/videos/search?q=hero+mariah+carey+youtube&view=detail&mid=CE5B48615F117B978A09CE5B48615F117B978A09&FORM=VIRE
Sunday 3 July 2016
Our Hell : Part 1
Hi Everyone
12 months ago, our previous blog was deleted due to a "software update".
I set up the new blog thinking it was the beginning of something wonderful.
A new beginning celebrating two children that are amazing and a whole family traveling through the journey that is Ataxia Telangiectasia where Type 1 Diabetes was just thrown in for good measure.
A child already diagnosed with this horrendous disease and all the heartbreak that goes along with accepting you no longer have 2 children that will go through life like anyone else.
Schooling, marriage, children and growing old.
Then the second child is diagnosed with Type 1 Diabetes.
Ok.
It is hard.
But it is manageable and we can try, at least, to stay on top of that one.
One is Terminal and one is not.
The hospital visit for the second child meant that we were all separated over the Christmas period and that is what hurt the most.
There have been scary times with the Type 1 over the last two and a half years, but nothing that compares to the first child's diagnosis.
With A-T, you are virtually given an end date.
You can monitor and maintain, but it will happen.
Two people meet in 1990 and are a perfect match.
They are young, but fight to stay together.
They know that they match perfectly.
They DREAM of a life of growing old together,
Houses, cars, holidays etc.
But then life throws them a major curveball.
Children are born to them with diseases that are unimaginable.
Diseases where they cannot get sick with the "common cold".
It could kill them.
Ok.
Let's stay away from people who are sick.
You can do that at home, but it is hard.
Parents send children to school sick all the time.
People cannot understand the importance of it for a family like ours.
But the "terminal" side of it is there constantly.
Each "happy" day it is there.
Each "sad" day it is there.
You try to hold onto the thought "But she is still here now. Make the most of it".
But it is so hard.
Over 10 years we have watched Amelia's motor skills deplete to the point where she cannot walk by herself anymore.
We keep walking her, doing our own backs, hips and knees in the process, trying to hold onto that ONE THING.
Must keep the legs moving.
We toilet and feed her now.
Her speech is so slow and slurred, that she gets SO frustrated with us when we cannot understand her.
Ataxia Telangiectasia is not only terminal and a loss of motor skills.........
The child is also 1000 times more likely to get Cancer.
We thought we were safe from the cancer part.
A-T kids are generally extremely sick with colds and coughs that they cannot recover from.
Amelia has NEVER been.
She has always been considered quite "healthy".
When Type 1 Diabetes was sick, I had him in hospital.
You cannot eat to raise your levels/have insulin to lower your levels when you are sick.
Who wants to eat when they are sick?
It stuffs the whole management system up!
The mental anguish of Type 1 and the mental anguish of having A-T is difficult for everyone.
Constant talking and psychologists become involved.
The ability to always search for a positive is the most valuable trait to have for anyone.
But we are proud of our "happy" house.
We live like anyone else.
There is lots of sarcasm, laughter and discussions about life.
We appreciate a smile and are grateful for our friends and family.
We are generally positive.
I thought that we had been dealt MORE than our fair dose of heartache in this lifetime.
But then came another blow.......
A-T child starting complaining of feeling "hot" all the time.
Then she started vomiting.
She quite often vomits when changes around her occur.
New bus driver? New class? Someone sitting with her while her dad and I try to be a couple.
One vomit and then she is fine.
We had just returned from Thailand.
She had been "hot" over there, but it WAS hot.
She started vomiting on the plane when returning home.
She continued vomiting at home.
But it was more than once.
It would continue every morning until lunchtime.
It was many times.
She started complaining of bad "stomach cramps".
I gave it 2 days to see if it stopped.
It didn't.
I put a post on FB and many of my A-T friends said "take her to hospital".
Normally your heart has to stop for me to take you to hospital.
I started wondering if it was actually something "more".
The local doctor that came to our house when the bad stomach cramps began, had been concerned about her swollen stomach (it was hard).
Maybe I should get more expert advice.
While trying to keep myself calm, because I knew going to hospital was going to be a major upheaval for everyone, I debated with myself over how I was going to handle this.
Ambulance because I cannot move her?
But they will only take her to the local hospital.
They do not know anything about Amelia and her A-T.
Do we drive 1 hour away to the local children's hospital where she is an outpatient and they know about her.
Would she handle the drive while being so sick?
Am I overreacting and wasting everyone's time?
I packed a bag.
I don't really know what I put in that bag, but I knew we may have to stay overnight.
Tom?
He was at school and going to be dropped back home in a few hours.
What was I going to do about him?
I rang my parents for him to stay the night there and packed an overnight bag for him, including all of his insulin and needles.
I rang Scott at work and told him of my plan.
"Seriously?" he said. "Do you think she is that bad?' he asked.
I explained my concerns and he agreed I should go.
He said he would meet me up there after work if we were still there.
We arrived safely at Royal Children's Hospital in Melbourne.
The drive was calm.
I needed it to be for both Amelia and I.
My brain had fighting thoughts between me "overeacting" and "just checking".
Inside the Emergency Triage section there were A LOT of people.
It was 12:30pm.
Apparently many families use it like it is a "general GP" due to the long waits to get into actual local doctors.
They are sent to an even bigger waiting room (approximately 60 families when we arrived), while others, like us, are rushed through.
Amelia was not going to handle sitting in a waiting room for long, so I was hoping to get in quick.
We got in very quickly and into a bed.
Scott had remembered a time where Amelia had vomited like this when she was younger.
It had been a UTI.
We did a urine test and it came back clear.
They started feeling her tummy area and commented that she was sore around the appendix area.
A basic ultrasound was ordered.
Through this test they told me her bladder was VERY full.
3 LITRES FULL!
Humiliation and tears ensued as they tried to drain the bladder.
Scott arrived after 6 hours of them trying and it was just not happening.
The doctor was quietly telling nurses off for what should be a "basic procedure".
Amelia was very upset and angry and telling them that they were not allowed to try again.
Eventually the doctor said "I will do it myself through ultrasound".
Two nurses he held to a very high standard assisted with happy gas with the last and final try.
At 10:30pm, he looked at the ultrasound screen and said
"I don't think I am looking at a bladder at all. I think it is some kind of cyst".
Scott and I knew instantly.
It was not a cyst.
14cm in size and full of 1 litre in fluid.
It was not a cyst.
.......to be continued..........
12 months ago, our previous blog was deleted due to a "software update".
I set up the new blog thinking it was the beginning of something wonderful.
A new beginning celebrating two children that are amazing and a whole family traveling through the journey that is Ataxia Telangiectasia where Type 1 Diabetes was just thrown in for good measure.
A child already diagnosed with this horrendous disease and all the heartbreak that goes along with accepting you no longer have 2 children that will go through life like anyone else.
Schooling, marriage, children and growing old.
Then the second child is diagnosed with Type 1 Diabetes.
Ok.
It is hard.
But it is manageable and we can try, at least, to stay on top of that one.
One is Terminal and one is not.
The hospital visit for the second child meant that we were all separated over the Christmas period and that is what hurt the most.
There have been scary times with the Type 1 over the last two and a half years, but nothing that compares to the first child's diagnosis.
With A-T, you are virtually given an end date.
You can monitor and maintain, but it will happen.
Two people meet in 1990 and are a perfect match.
They are young, but fight to stay together.
They know that they match perfectly.
They DREAM of a life of growing old together,
Houses, cars, holidays etc.
But then life throws them a major curveball.
Children are born to them with diseases that are unimaginable.
Diseases where they cannot get sick with the "common cold".
It could kill them.
Ok.
Let's stay away from people who are sick.
You can do that at home, but it is hard.
Parents send children to school sick all the time.
People cannot understand the importance of it for a family like ours.
But the "terminal" side of it is there constantly.
Each "happy" day it is there.
Each "sad" day it is there.
You try to hold onto the thought "But she is still here now. Make the most of it".
But it is so hard.
Over 10 years we have watched Amelia's motor skills deplete to the point where she cannot walk by herself anymore.
We keep walking her, doing our own backs, hips and knees in the process, trying to hold onto that ONE THING.
Must keep the legs moving.
We toilet and feed her now.
Her speech is so slow and slurred, that she gets SO frustrated with us when we cannot understand her.
Ataxia Telangiectasia is not only terminal and a loss of motor skills.........
The child is also 1000 times more likely to get Cancer.
We thought we were safe from the cancer part.
A-T kids are generally extremely sick with colds and coughs that they cannot recover from.
Amelia has NEVER been.
She has always been considered quite "healthy".
When Type 1 Diabetes was sick, I had him in hospital.
You cannot eat to raise your levels/have insulin to lower your levels when you are sick.
Who wants to eat when they are sick?
It stuffs the whole management system up!
The mental anguish of Type 1 and the mental anguish of having A-T is difficult for everyone.
Constant talking and psychologists become involved.
The ability to always search for a positive is the most valuable trait to have for anyone.
But we are proud of our "happy" house.
We live like anyone else.
There is lots of sarcasm, laughter and discussions about life.
We appreciate a smile and are grateful for our friends and family.
We are generally positive.
I thought that we had been dealt MORE than our fair dose of heartache in this lifetime.
But then came another blow.......
A-T child starting complaining of feeling "hot" all the time.
Then she started vomiting.
She quite often vomits when changes around her occur.
New bus driver? New class? Someone sitting with her while her dad and I try to be a couple.
One vomit and then she is fine.
We had just returned from Thailand.
She had been "hot" over there, but it WAS hot.
She started vomiting on the plane when returning home.
She continued vomiting at home.
But it was more than once.
It would continue every morning until lunchtime.
It was many times.
She started complaining of bad "stomach cramps".
I gave it 2 days to see if it stopped.
It didn't.
I put a post on FB and many of my A-T friends said "take her to hospital".
Normally your heart has to stop for me to take you to hospital.
I started wondering if it was actually something "more".
The local doctor that came to our house when the bad stomach cramps began, had been concerned about her swollen stomach (it was hard).
Maybe I should get more expert advice.
While trying to keep myself calm, because I knew going to hospital was going to be a major upheaval for everyone, I debated with myself over how I was going to handle this.
Ambulance because I cannot move her?
But they will only take her to the local hospital.
They do not know anything about Amelia and her A-T.
Do we drive 1 hour away to the local children's hospital where she is an outpatient and they know about her.
Would she handle the drive while being so sick?
Am I overreacting and wasting everyone's time?
I packed a bag.
I don't really know what I put in that bag, but I knew we may have to stay overnight.
Tom?
He was at school and going to be dropped back home in a few hours.
What was I going to do about him?
I rang my parents for him to stay the night there and packed an overnight bag for him, including all of his insulin and needles.
I rang Scott at work and told him of my plan.
"Seriously?" he said. "Do you think she is that bad?' he asked.
I explained my concerns and he agreed I should go.
He said he would meet me up there after work if we were still there.
We arrived safely at Royal Children's Hospital in Melbourne.
The drive was calm.
I needed it to be for both Amelia and I.
My brain had fighting thoughts between me "overeacting" and "just checking".
Inside the Emergency Triage section there were A LOT of people.
It was 12:30pm.
Apparently many families use it like it is a "general GP" due to the long waits to get into actual local doctors.
They are sent to an even bigger waiting room (approximately 60 families when we arrived), while others, like us, are rushed through.
Amelia was not going to handle sitting in a waiting room for long, so I was hoping to get in quick.
We got in very quickly and into a bed.
Scott had remembered a time where Amelia had vomited like this when she was younger.
It had been a UTI.
We did a urine test and it came back clear.
They started feeling her tummy area and commented that she was sore around the appendix area.
A basic ultrasound was ordered.
Through this test they told me her bladder was VERY full.
3 LITRES FULL!
Humiliation and tears ensued as they tried to drain the bladder.
Scott arrived after 6 hours of them trying and it was just not happening.
The doctor was quietly telling nurses off for what should be a "basic procedure".
Amelia was very upset and angry and telling them that they were not allowed to try again.
Eventually the doctor said "I will do it myself through ultrasound".
Two nurses he held to a very high standard assisted with happy gas with the last and final try.
At 10:30pm, he looked at the ultrasound screen and said
"I don't think I am looking at a bladder at all. I think it is some kind of cyst".
Scott and I knew instantly.
It was not a cyst.
14cm in size and full of 1 litre in fluid.
It was not a cyst.
.......to be continued..........
Wednesday 4 May 2016
Life
Hello,
Unusual for me to write a blog at all lately, let alone two, but I am currently on "forced rest" (although not much force is needed. I feel revolting and have barely any energy).
Amelia is fantastic at the moment.
She has amazing teachers and friends that are so bubbly and full of personality.
She is bossy, full of attitude and we are all LOVING it.
We are encouraging her to make more decisions for herself, rather than us just taking control.
It has taken her a while to get used to deciding what "SHE would like to do" or about "what SHE would like", but now it is easy to see her taking it to most areas of her daily routine.
As my dad recently said "It makes you laugh, it makes you smile, to see her with so much spunk now".
The bossy side of it can be a bit hard to keep up with!
There are many things that must happen NOW.
Scott says she gets that from me.
I obviously disagree!
Tom has really come into his own this year.
He has an awesome group of friends around him now, rather than just playing with "whoever".
His teacher has energy levels to rival his and they both have a healthy and quite entertaining teacher/student relationship that both challenges and inspires him on all fronts.
He has matured greatly and insists on helping me with everything from cooking dinner to unpacking the dishwasher.
I am still waiting for the "clean my bedroom" stage to arrive.
Hopefully before he leaves home he will learn that one.
Scott is Scott.
Always supportive, a good dad and a good husband.
Me?
I am the emotional, over thinker I always have been.
In the last 12 months I have found a life for myself outside the home where I am loved and I am appreciated for something other than being a carer and a wife.
I get to wear nice clothes, have adult conversations and be given important responsibilities.
I love it.
Scott and I have had serious conversations about "whether I should be working as much as what I am".
I have always argued with him that I cannot understand why he is questioning it.
I thought he was being an arse actually.
He is getting food on the table.
So what if the toilet is always discoloured and he needs to search the mountain load of washing for underwear!
But last Thursday night, the day of my thyroid biopsy, I started getting a sore throat and spent the night in a bed of sweat.
Friday night after work, the sweating became much worse and this incredibly painful body ache began. I lay on the couch falling in and out of sleep.
Scott told me to go to bed.
I think it ended up being one of the longest nights ever as I alternated between hot sweating and violent shivering.
The pain of the body aches meant I couldn't even roll over.
This continued all day Saturday and Saturday night.
Because Scott had forced medication and fluid into me Saturday afternoon and night (I will never forget looking over his shoulder at the kids worried looks) I felt marginally better on Sunday.
Once the body aches started disappearing and my eyesight returned to normal, I was just left with this incredible tiredness and nasty cough.
Then the stress of "work" began.
Such a big week and so much needed to be done.
The guilt consumed me for 2 days and I became angry and frustrated that I could not go.
Then it hit me.
As I watched daytime television and an awesome movie....
As I opened my kindle for the first time in 12 months.....
As I spent time with the 1 year old Labrador INSIDE and remembered what an awesome companion he is........
As I spent invaluable time just sitting and talking to Amelia......
As we all became captivated by The Voice for another year, I watched Tom spin the egg chair he sat in, The Voice app open on his ipad. I watched him be "a judge" and listen to the voice only. I watched him engrossed in listening to a singer, his hand in the air moving to the music. Then his hand rose telling the singer to push it further........
I realised I had forgotten what my sole purpose is.
Instead of rushing and being stressed, I was grounded again to what was important in my life.
While searching and trying to maintain what I could be, what I should be, what I missed......
I lost a major part of me.
Getting the flu and being forced to rest has been what obviously needed to happen.
I have pushed myself to the very furthest limit to find a work/life balance.
We have been able to survive on a low wage.
I was working for ME.
I had become rundown, stressed out and was drinking enough wine to keep the local bottle shop operating.
I now see that Scott saw all of this happening.
I guess my friends did too.
Life is about constantly evolving.
To be a better person and to be in a good place.
I needed to hit rock bottom to see that I need to make changes.
Today my 66 year old mother is being moved into a permanent home for the elderly.
In a few years, I may write about what this means to me.
xxx
Unusual for me to write a blog at all lately, let alone two, but I am currently on "forced rest" (although not much force is needed. I feel revolting and have barely any energy).
Amelia is fantastic at the moment.
She has amazing teachers and friends that are so bubbly and full of personality.
She is bossy, full of attitude and we are all LOVING it.
We are encouraging her to make more decisions for herself, rather than us just taking control.
It has taken her a while to get used to deciding what "SHE would like to do" or about "what SHE would like", but now it is easy to see her taking it to most areas of her daily routine.
As my dad recently said "It makes you laugh, it makes you smile, to see her with so much spunk now".
The bossy side of it can be a bit hard to keep up with!
There are many things that must happen NOW.
Scott says she gets that from me.
I obviously disagree!
Tom has really come into his own this year.
He has an awesome group of friends around him now, rather than just playing with "whoever".
His teacher has energy levels to rival his and they both have a healthy and quite entertaining teacher/student relationship that both challenges and inspires him on all fronts.
He has matured greatly and insists on helping me with everything from cooking dinner to unpacking the dishwasher.
I am still waiting for the "clean my bedroom" stage to arrive.
Hopefully before he leaves home he will learn that one.
Scott is Scott.
Always supportive, a good dad and a good husband.
Me?
I am the emotional, over thinker I always have been.
In the last 12 months I have found a life for myself outside the home where I am loved and I am appreciated for something other than being a carer and a wife.
I get to wear nice clothes, have adult conversations and be given important responsibilities.
I love it.
Scott and I have had serious conversations about "whether I should be working as much as what I am".
I have always argued with him that I cannot understand why he is questioning it.
I thought he was being an arse actually.
He is getting food on the table.
So what if the toilet is always discoloured and he needs to search the mountain load of washing for underwear!
But last Thursday night, the day of my thyroid biopsy, I started getting a sore throat and spent the night in a bed of sweat.
Friday night after work, the sweating became much worse and this incredibly painful body ache began. I lay on the couch falling in and out of sleep.
Scott told me to go to bed.
I think it ended up being one of the longest nights ever as I alternated between hot sweating and violent shivering.
The pain of the body aches meant I couldn't even roll over.
This continued all day Saturday and Saturday night.
Because Scott had forced medication and fluid into me Saturday afternoon and night (I will never forget looking over his shoulder at the kids worried looks) I felt marginally better on Sunday.
Once the body aches started disappearing and my eyesight returned to normal, I was just left with this incredible tiredness and nasty cough.
Then the stress of "work" began.
Such a big week and so much needed to be done.
The guilt consumed me for 2 days and I became angry and frustrated that I could not go.
Then it hit me.
As I watched daytime television and an awesome movie....
As I opened my kindle for the first time in 12 months.....
As I spent time with the 1 year old Labrador INSIDE and remembered what an awesome companion he is........
As I spent invaluable time just sitting and talking to Amelia......
As we all became captivated by The Voice for another year, I watched Tom spin the egg chair he sat in, The Voice app open on his ipad. I watched him be "a judge" and listen to the voice only. I watched him engrossed in listening to a singer, his hand in the air moving to the music. Then his hand rose telling the singer to push it further........
I realised I had forgotten what my sole purpose is.
Instead of rushing and being stressed, I was grounded again to what was important in my life.
While searching and trying to maintain what I could be, what I should be, what I missed......
I lost a major part of me.
Getting the flu and being forced to rest has been what obviously needed to happen.
I have pushed myself to the very furthest limit to find a work/life balance.
We have been able to survive on a low wage.
I was working for ME.
I had become rundown, stressed out and was drinking enough wine to keep the local bottle shop operating.
I now see that Scott saw all of this happening.
I guess my friends did too.
Life is about constantly evolving.
To be a better person and to be in a good place.
I needed to hit rock bottom to see that I need to make changes.
Today my 66 year old mother is being moved into a permanent home for the elderly.
In a few years, I may write about what this means to me.
xxx
Thursday 28 April 2016
No Title this time
Hello
Today I turned into a small 5 year old child.
For just a moment.
A very brief moment, but it was very powerful.
I do not write many entries now.
There are many reasons for this.
Most are hurtful messgaes from people and attack the person I am trying to change into.
A positive person who is enjoying her life and is appreciative and loves all of those around her.
But this year, or the Universe around me, is battling me on this.
It is like "ok. We will challenge you some more then, if you are doing ok".
So much going on that I cannot talk about.
It is frustrating.
Amelia is doing well and that is what this site (and the previous one with 250 odd RAW entries) is about.
It is not about me.
Tom is amazing and has the most wonderful teacher and supportive friends around him this year.
Scott is his ever beautiful self.
Putting up with me and helping with the kids as soon as he walks in the door after a stressful day at work.
I am SO lucky and SO grateful that he chose me.
I am finding myself through an amazing, inspiring and uplifting workplace.
A place that openly tells me that they appreciate me........outside the home.
The home where I am a fulltime carer.
Yesterday I attended a funeral for the father of one of the most important people in my life.
As the service ended and the front row showed their emotion...........
I couldn't help myself.
I left my seat from about 5 rows back and just went and held her.
It was her dad.
Everyone has and needs a dad.
Today I left a surgical room where a needle had been inserted into my Thyroid.
Twice.
My dad was standing there waiting for me.
I hugged him.
So tight.
I was a 5 year old child that just needed her dad.
xxx
Today I turned into a small 5 year old child.
For just a moment.
A very brief moment, but it was very powerful.
I do not write many entries now.
There are many reasons for this.
Most are hurtful messgaes from people and attack the person I am trying to change into.
A positive person who is enjoying her life and is appreciative and loves all of those around her.
But this year, or the Universe around me, is battling me on this.
It is like "ok. We will challenge you some more then, if you are doing ok".
So much going on that I cannot talk about.
It is frustrating.
Amelia is doing well and that is what this site (and the previous one with 250 odd RAW entries) is about.
It is not about me.
Tom is amazing and has the most wonderful teacher and supportive friends around him this year.
Scott is his ever beautiful self.
Putting up with me and helping with the kids as soon as he walks in the door after a stressful day at work.
I am SO lucky and SO grateful that he chose me.
I am finding myself through an amazing, inspiring and uplifting workplace.
A place that openly tells me that they appreciate me........outside the home.
The home where I am a fulltime carer.
Yesterday I attended a funeral for the father of one of the most important people in my life.
As the service ended and the front row showed their emotion...........
I couldn't help myself.
I left my seat from about 5 rows back and just went and held her.
It was her dad.
Everyone has and needs a dad.
Today I left a surgical room where a needle had been inserted into my Thyroid.
Twice.
My dad was standing there waiting for me.
I hugged him.
So tight.
I was a 5 year old child that just needed her dad.
xxx
Sunday 6 March 2016
The Secret Garden Of Life
Hello.
I have said it many times before, but when Amelia was diagnosed with this horrible disease, the whole family entered a whole new world.
We met people that are so amazing and so wonderful that unfortunately those in the "normal" world will never experience these people.
It is people that also have a child with a terrible illness.
It may be one that could take the child to a special place far away at any minute.
It can also be an illness that makes them worry about that child's future.
Who is going to look after them when I am gone?
It is grown adults that choose to "work" with these kids and try to help them to communicate, move and integrate into society a little easier.
It is a shockingly low wage, but a role they seriously "glow" like a bloody angel from.
It is siblings of these children who know more than they should about life and death.
Their own worries and concerns are only exasperated by living with someone they adore and yet constantly hearing about those that have moved to the better life so much earlier than they should have.
It is a constant check on the emotional health of your special needs child and their siblings.
Amelia knows she is sick.
Amelia knows there are Ataxia Telangiectasia children dying.
She knows A-T kids die at different ages.
Her younger brother does too.
You just can't keep it from them.
We are so lucky to have found the "secret garden" that is Amelia's school.
We ALL feel welcome and loved.
Parents and staff and children smile.
Like seriously smile.
The world is different there.
Everyone appreciates every single minute of every single day.
Tom chose to spend his "curriculum day" there during the week.
On Saturday morning, we received news of one of Amelia's friends passing suddenly the night before.
It is kind of not sudden when you look at his disease, but it is sudden when you were talking and laughing with him a week earlier.
I broke the news to Amelia the only way I knew how.
I told her as gently as I could.
My very own child asked me, "Is that what is going to happen to me?".
Then I held her while she cried.
Rest In Peace Jordy.
Thank you for loving Amelia.
She adored you too.
I have said it many times before, but when Amelia was diagnosed with this horrible disease, the whole family entered a whole new world.
We met people that are so amazing and so wonderful that unfortunately those in the "normal" world will never experience these people.
It is people that also have a child with a terrible illness.
It may be one that could take the child to a special place far away at any minute.
It can also be an illness that makes them worry about that child's future.
Who is going to look after them when I am gone?
It is grown adults that choose to "work" with these kids and try to help them to communicate, move and integrate into society a little easier.
It is a shockingly low wage, but a role they seriously "glow" like a bloody angel from.
It is siblings of these children who know more than they should about life and death.
Their own worries and concerns are only exasperated by living with someone they adore and yet constantly hearing about those that have moved to the better life so much earlier than they should have.
It is a constant check on the emotional health of your special needs child and their siblings.
Amelia knows she is sick.
Amelia knows there are Ataxia Telangiectasia children dying.
She knows A-T kids die at different ages.
Her younger brother does too.
You just can't keep it from them.
We are so lucky to have found the "secret garden" that is Amelia's school.
We ALL feel welcome and loved.
Parents and staff and children smile.
Like seriously smile.
The world is different there.
Everyone appreciates every single minute of every single day.
Tom chose to spend his "curriculum day" there during the week.
On Saturday morning, we received news of one of Amelia's friends passing suddenly the night before.
It is kind of not sudden when you look at his disease, but it is sudden when you were talking and laughing with him a week earlier.
I broke the news to Amelia the only way I knew how.
I told her as gently as I could.
My very own child asked me, "Is that what is going to happen to me?".
Then I held her while she cried.
Rest In Peace Jordy.
Thank you for loving Amelia.
She adored you too.
Thursday 11 February 2016
2016
Hello!
I need a distraction today from a little man who I know is in surgery.
Not my little man, a friends.
Anyway today I will focus on happy things........
Our family is having a very good year so far.
Amelia and Tom have settled extremely well into the 2016 school year.
Amelia began her first year of Secondary School and is absolutely loving it.
There has been no anxious vomiting and she is coming home with a massive smile on her face.
She is having trouble waking up in the morning and is showing many signs of attitude.
The teenage years are approaching hard and fast!
Some of her responses to me during conversation require me leaving the room to laugh!
I put regular (and may I say hilarious) conversations with both kids on the Amelia's Project Facebook account. Here is the link if you want to join.....
https://www.facebook.com/groups/ameliasproject/?ref=ts&fref=ts
Amelia has new friends, old friends, new teachers and staff and old teachers and staff in her classroom.
The Secondary yard is so much more exciting with remote control cars, cricket and a Glee Club (which she joined).
Attitude surfaced when I asked her what she did in Glee Club.
"What do you think ?!?! WE sang".
(insert her rolling her eyes here).
I was proud of her controlling her anxiety when it was announced that she had been allocated a new bus driver and aide to get too and from school.
She loved the fun and relationship she had with the previous ones.
She had a good cry and then we looked at the positives.
Tom has a new teacher to the school that is young and enthusiastic.
She has introduced "systems" and "incentives" to encourage learning.
Tom is extremely competitive, so this is definitely working in our favour.
Our mornings are no longer full of arguments to get ready for school (which includes an insulin needle for his Type 1 Diabetes).
We are no longer arguing over completing homework and handing it in every Friday.
He has also started reading novels again.
Eight months ago, I bought him "Harry Potter".
In his reflection comments, I was happy to see him write "I am disappointed that I did not start reading this sooner".
I cannot wait until he is finished to show him the movie!
It is true what they say about teachers who inspire learning.
This teacher has put the spark back in his eyes and enthusiasm to go to school.
Over the six week school holiday break we took timeout to be home, to relax, to socialise and just BE.
I was exhausted by the end because I virtually had the kids 24/7.... well Amelia at least.
She does not like respite and I refuse to force her to go.
I have a problem with handing responsibility over to strangers anyway, so it works for both of us.
Both Amelia and Tom have an incredible bond.
They still behave like siblings yelling at each other a lot, but in general they adore each other.
It is magical to watch.
This year I have made a few changes to how I live my own life.
I have set myself goals with no pressure of when to complete them.
These include writing more of the book I began three years ago and making some changes around the house.
My work days may delay when it is achieved, but I will do it.
I have also changed my attitude towards anyone in my life and my families life.
I can now see more clearly the troublemakers, negative personalities and people that are not genuine in how they speak and conduct themselves.
I used to spread myself too thin in the friendship arena and get upset about some that have chosen to leave Amelia's life.
She is clever enough to know they no longer visit her.
But in 2016 I can see a fresh start in so many areas.
I can see happiness returning and flourishing.
It has been five years since Amelia's diagnosis and two years since Tom's.
Maybe it has taken this long to adjust to the new normal that our life will always be.
Maybe it has taken this long to genuinely appreciate the smile, the laugh and the beautiful conversations.
Maybe it has taken this long to appreciate the relationships with those that were always there and always will be.
xxx
Below are some amazing photo's taken by a talented photographer called Rebecca Brindley.
Here is the link to her website....
http://www.becbrindleyphotography.com/
I need a distraction today from a little man who I know is in surgery.
Not my little man, a friends.
Anyway today I will focus on happy things........
Our family is having a very good year so far.
Amelia and Tom have settled extremely well into the 2016 school year.
Amelia began her first year of Secondary School and is absolutely loving it.
There has been no anxious vomiting and she is coming home with a massive smile on her face.
She is having trouble waking up in the morning and is showing many signs of attitude.
The teenage years are approaching hard and fast!
Some of her responses to me during conversation require me leaving the room to laugh!
I put regular (and may I say hilarious) conversations with both kids on the Amelia's Project Facebook account. Here is the link if you want to join.....
https://www.facebook.com/groups/ameliasproject/?ref=ts&fref=ts
Amelia has new friends, old friends, new teachers and staff and old teachers and staff in her classroom.
The Secondary yard is so much more exciting with remote control cars, cricket and a Glee Club (which she joined).
Attitude surfaced when I asked her what she did in Glee Club.
"What do you think ?!?! WE sang".
(insert her rolling her eyes here).
I was proud of her controlling her anxiety when it was announced that she had been allocated a new bus driver and aide to get too and from school.
She loved the fun and relationship she had with the previous ones.
She had a good cry and then we looked at the positives.
Tom has a new teacher to the school that is young and enthusiastic.
She has introduced "systems" and "incentives" to encourage learning.
Tom is extremely competitive, so this is definitely working in our favour.
Our mornings are no longer full of arguments to get ready for school (which includes an insulin needle for his Type 1 Diabetes).
We are no longer arguing over completing homework and handing it in every Friday.
He has also started reading novels again.
Eight months ago, I bought him "Harry Potter".
In his reflection comments, I was happy to see him write "I am disappointed that I did not start reading this sooner".
I cannot wait until he is finished to show him the movie!
It is true what they say about teachers who inspire learning.
This teacher has put the spark back in his eyes and enthusiasm to go to school.
Over the six week school holiday break we took timeout to be home, to relax, to socialise and just BE.
I was exhausted by the end because I virtually had the kids 24/7.... well Amelia at least.
She does not like respite and I refuse to force her to go.
I have a problem with handing responsibility over to strangers anyway, so it works for both of us.
Both Amelia and Tom have an incredible bond.
They still behave like siblings yelling at each other a lot, but in general they adore each other.
It is magical to watch.
This year I have made a few changes to how I live my own life.
I have set myself goals with no pressure of when to complete them.
These include writing more of the book I began three years ago and making some changes around the house.
My work days may delay when it is achieved, but I will do it.
I have also changed my attitude towards anyone in my life and my families life.
I can now see more clearly the troublemakers, negative personalities and people that are not genuine in how they speak and conduct themselves.
I used to spread myself too thin in the friendship arena and get upset about some that have chosen to leave Amelia's life.
She is clever enough to know they no longer visit her.
But in 2016 I can see a fresh start in so many areas.
I can see happiness returning and flourishing.
It has been five years since Amelia's diagnosis and two years since Tom's.
Maybe it has taken this long to adjust to the new normal that our life will always be.
Maybe it has taken this long to genuinely appreciate the smile, the laugh and the beautiful conversations.
Maybe it has taken this long to appreciate the relationships with those that were always there and always will be.
xxx
Below are some amazing photo's taken by a talented photographer called Rebecca Brindley.
Here is the link to her website....
http://www.becbrindleyphotography.com/
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