A Zillion Photo's !!!!!!

After much persistence I have finally succeeded in uploading photo's.

Unfortunately  you must now endure MANY !!!!!

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 Amelia's School Christmas Concert. Amelia and Tom are ready to go !!!

                         A very special friend in Amelia's life. Miss Hayley.

A special gift from "Aberlene Limousines".  A special ride home for Amelia from school, on the last day of                    2011 with nine of her friends.

                                             Christmas morning. A very excited little boy.

                 Very graceful on Christmas morning. Sat and soaked up the atmosphere for a minute.

                                                 Extremely happy at Christmas lunch.

                                                       THE special Christmas skirt !!!

                                                   Amelia had her special Poppy (my dad).

                                                          Our one day at the beach.

                                         The crumbed child that kept acting like he knew us !!!!!

                                            Danny and Donna's new baby. Amelia is in love !!!!

                                 A special visit from 2 gorgeous girls who live on the Sunshine Coast.

                                               And then we flew up to stay with their family.

                                              Tom absolutely LOVED the lifestyle up there.

                                                Amelia at Coolum Beach in Queensland.

                                                 Our hosts and us. (7 girls and Tom !!!!)

 My little chef, Tom, making Italian sausage rolls.

Tom's first day of Prep and Amelia's first day of Grade 3.

                                                                 My mum and dad.

                                                                   Scott and his dad.

                                                                              Us.

                                                      Amelia's first day at "special school".

                                                     Just about to enter for her first day.


xxx

First Day AGAIN ........

Firstly, thank you for all he kind messages both yesterday and today.

Secondly, people that told me Tom would get exhausted from school LIED !!!!!

I definately have the two extremes when it comes to our children.
Amelia cannot talk about "her day" while Tom tells me every detail.
Amelia is unable to walk or talk competently at the end of the day but Tom behaves like he has red cordial ALL day.

While I am loving hearing about Tom's adventures, I would really love to hear about Amelia's as well.

It is obvious that Amelia has declined in everything recently.
On the weekend she could not remember where the "forks" were in the kitchen.
I was devastated.

But now we have gone back to "me getting exhausted and confused Amelia" at the end of a school day.

Imagine if it was your daughter...........

Whinge over.

Both children had great days today.
Amelia was very excited and happy this morning.
My dad came and saw her begin.
"This place will be really good for her. Everyone is so friendly" he said with tears in his eyes.
Amelia also had very special visitors from her mainstream school.
She was VERY excited to tell me about this.

Next week she needs to begin "on time" so that she can participate in swimming.
That means Tom and Amelia start at 9am , at two schools 15 minutes travel distance apart.
Where there is a will, there is a way !!!!

Finally, Tom had his first "hip hop" dance lesson tonight.
Hysterical is an understatement.
He LOVED it !!
BUT he is still not exhausted !!

Speak soon

xxx

Big Step

Last night we said good night to our children and experienced a feeling of great sadness.
After over 8 years of at least one child being at home we would now have both at full time school.

The tears flowed.

Today our 5 year old son started prep.

I know he needs the challenge and stimulation.
I know he is going to enjoy attending school.

I just feel that I am losing a part of him.
The innocent, protected and affectionate part.

We were all nervous this morning.
Amelia was feeling protective.
Scott and I felt lost and empty.

I have never seen Tom so nervous and vulnerable as when he stood in line waiting to go into class.

Fast forward to 3:30pm and Tom greeted me with  "You were right mum. I did love school"
with so much happiness and animation.
And he was bouncing !!!!!

Tom has not stopped talking and moving since he came home from his very first day at school.

We are all happy and relieved.

We just needed to survive the very first day.

Now I may let myself soak up a little feeling I had today...............

I was not "busy".
There was nothing to do...............

(do not tell anyone but I think I enjoyed it a little bit!).

Tomorrow is a new day and a new beginning.

Amelia's first day at the special school............

xxx

The start of a new chapter

I can feel the anxiety coming.
It is almost making me shake.....

Another year for Amelia and a new beginning for Tom.
A new beginning for me.

Amelia begins school tomorrow and Tom begins on Monday.
Tomorrow Tom and I will spend our last PRE-school day together before he leaves for full time school.

So many thoughts and so many worries.
So much anticipation and excitement about what is ahead for both children.

But my little man Tom.
He is different.
I worry about him for different reasons than I do Amelia.

Below is a poem I stole off a friend.
I think it explains everything beautifully..............



Dear World: 
I bequeath to you today one little boy in a school uniform. . . with two brown eyes. . .
And a happy laugh that ripples all day long, and a batch of  brown hair that bounces in the sunlight when he runs.

I trust you'll treat him well.

He's slipping out of the backyard of my heart this morning and skipping off down the street to his first day of school.
And never again will he be completely mine. . .

Prim and proud, he'll wave a young and independent hand this morning, and say goodbye and walk with little-boy steps to the nearby schoolhouse. . .

Gone will be the chattering little boy who lived only for play, and gone will be the delightful little boy who roamed the yard like a proud prince with nary a care in her little world.

Now, he will learn to stand in lines. . . and wait by the alphabet for his name to be called. . .
He will learn to tune his little-boy ears for the sound of school bells, and for deadlines. . .
He will learn to whisper and gossip. . .
And to look at the ceiling in a disinterested way when the little girl across the aisle sticks out her tongue.
Now he will learn to be jealous. . . and now he will learn how it is to feel hurt inside. . . and now he will learn how not to cry. . .

No longer will he have time to sit on the front porch steps on a summer day and watch while an ant scurries across a crack in the sidewalk. . .
Or will he have time to pop out of bed with the dawn to kiss lilac blossoms in the morning dew. . .
Now he will worry about important things. . . like grades. . . and what shoes to wear. . . and whose best friend is whose. . .
Now he will worry about the little girl who pulls his hair at recess time. . . and staying after school. . . and which little girls like which little boys. . .

And the magic of books and knowledge will soon take the place of the magic of his blocks and cars.

And he will find new heroes. . .
For five full years I've been his sage and Santa Claus. . . his pal and playmate. . . his mother and his friend. . .
Now, alas, he'll learn to share his worship and adoration with his teachers (which is only right). . .
And no longer will I be the smartest, greatest woman in the world. . .

Today, when the first school bell rings, he'll learn how it is to be a member of the group. . . with all its privileges, and, of course, its disadvantages, too.

He will learn in time that proper young men do not laugh out loud. . . or kiss dogs. . . or keep frogs in pickle jars in bedrooms. . . or watch ants scurry across the cracks in a summer sidewalk. . .

Today, he will begin to learn for the first time that all who smile at him are not his friends. . . That "the group" can be a demanding mistress. . .

And I'll stand on the porch and watch him start out on the long, long journey to becoming a man. . .

So World, I bequeath to you today one little boy in a school uniform and two brown eyes. . .
And a happy laugh that ripples all day long, and a batch of  brown hair that bounces in the sunlight when he runs.

I trust you'll treat him well.


AUTHOR UNKNOWN


xxx

Friends

After repeatedly trying to upload photo's each week....
I GIVE UP.

I can do it on Facebook but cannot do it here.

So I decided to share another persons piece of writing with you.
It is something that someone posted recently .
The original author is unknown.

Many of my friends have struggled with "true friendship" recently.
Friends that love and accept you for who you are.
Friends that stand by you through the good and the bad.
Friends that make you feel comfortable and help you to smile.

I think this poem explains all types of friendship perfectly.


Reason, Season, Lifetime

People always come into your life for a reason, a season, or a lifetime.
When you figure out which it is, you know exactly what to do.

When someone is in your life for a REASON,
It is usually to meet a need you have expressed outwardly or inwardly.
They have come to assist you through a difficulty,
Or to provide you with guidance and support,
To aid you physically, emotionally, or even spiritually.

They may seem like a godsend to you, and they are.
They are there for the reason you need them to be.
Then, without any wrong doing on your part or at an inconvenient time,
This person will say or do something to bring the relationship to an end.

Sometimes they die. Sometimes they just walk away.
Sometimes they act up and force you to take a stand.
What we must realize is that our need has been met, our desire fulfilled; their work is done.
The prayer you sent up has been answered and it is now time to move on.

When people come into your life for a SEASON,
It is because your turn has come to share, grow, or learn.
They may bring you an experience of peace or make you laugh.
They may teach you something you have never done.

They usually give you an unbelievable amount of joy.
Believe it! It is real! But, only for a season.
And like Spring turns to Summer and Summer to Fall,
The season eventually ends.

LIFETIME relationships teach you lifetime lessons;
Those things you must build upon in order to have a solid emotional foundation.
Your job is to accept the lesson, love the person anyway;
And put what you have learned to use in all other relationships and areas in your life.

It is said that love is blind but friendship is clairvoyant.
Thank you for being part of my life,
Whether you were a reason, a season or a lifetime.

Author – Unknown

School/s

I have just returned from another weekend at the "flat".

I know how lucky I am to have the opportunity to get away and rejuvenate.
Lucky enough to have a place to escape to and lucky enough that I have a husband who says "GO".

I spent the time alone, watching "gossip girl" (sad I know!) and thinking about everything.

Every time I go it is for one reason only.
I am negative, snappy and need to remove myself from everyone.

Upon my return today I was ready for the next chapter in our lives.

Feeling positive and content again.

The next chapter?

Tom begins school.
Mentioned many times.

Amelia is also beginning another year of school.
Very difficult for her because she does find it hard.

But this year SHE has also requested to attend a local special school two times a week.

Many of you may remember I took Amelia for a visit last December.
It is a school that takes children with physical disibilities and deteriorating health.
The class Amelia was welcomed into was still learning to read and write.
They could all handle a conversation......and they were smart.
She fitted in immediately.
ALL of them have been dealt with such horrible illnesses and yet they loved life.
She was not the only one with a walking frame.
She was not the only one who owns a wheelchair.
She was not the only one that takes longer to speak.

She was equal to everyone else.

When I asked her which day she would like to attend in 2012 she asked to see the timetable.
Amelia decided that she liked the activites and subjects on Tuesdays AND Wednesdays so she will "go two days please".

Her choice.

I explained that she will only go to her "mainstream " school three days a week then.
"I know" she said (looking at me confidently).

So it is organised and she is excited.
She still gets to stay with everyone she knows in "mainstream" but gets to be with others "like" her.

So now I have two different schools to attend morning and afternoon on Tuesdays and Wednesdays but I look forward to watching BOTH my children grow and develop this year.

xxx

Research

As many of you know I am in contact with families worldwide who have children with A-T.
Recently in Florida there was a BIG maraton at DisneyWorld for A-T.
The founder of ATCP was there.
It is the American organisation trying to find a cure through research and fundraising.
This man has "many millions" behind him now to support saving our precious children.

Below is a conversation that one of the mothers had with Brad Margus.

Families live in hope and crave for information on research.
This conversation shows the effort going in to helping our kids.

Amelia's Project made a donation in August to the Australian organisation doing exactly the same thing, Brashat........



OK...I was asked to share re: research onversation I had with Brad Margus founder of A-TCP from this wknd @ Disney.
The "hope", & cure we all want for our A-T kids is stem cell research. Replacing the dead/dying brain cells with fresh new ones! Unfortunately, this is very expensive and it is currently unavailable for our A-T kids. It is still being tested on lab rats and some bigger more world renowned diseases such as Alzheimer's and Parkinson's. It does seem promising, but when it will actually be available for our A-T children is an entirely different story. From what I gathered, he did not know.
Another "hope" is Deep Brain Stimulation(DBS) currently being used in Parkinson's patients and other rare movement disorders. This is currently available, but at a costly price and has not been tested on A-T patients. DBS has been proven effective in Parkinson's to control tremors and steady gait.
There is also a new drug that is ready to be tested on humans. Not sure if the control group will be A-T or Freidrich's Ataxia, but the results will be the same none-the-less. This drug will prolong life, not cure A-T. According to Mr. Margus and his two sons, they would rather have "quality of life", not a longer more debilitating one. Since each case of A-T is unique to the child, perhaps the drug could affect A-T children differently, especially if given at a young age. The younger children could benefit greater and their results better. (He did not tell me the name of the drug.)
Also, Mr. Margus is a firm believer in exercise and nutrition. As am I. Libby has a G-Tube because Hopkins recommended it. Libby had no weight gain for years. Mr. Margus says malnourishment seems to be a huge problem for children with A-T. Not because parents don't feed their children, but because the children are too fatigued to eat and under consume, plus kids are constantly in motion due to the A-T. He believes children/young adults with A-T should have extra supplementation daily whether via GT or by mouth. The more nourishment, the more energy and functioning they will exude. The more their bodies move, the better! Most A-T children will eventually require a GT anyway so why not start with one early and give them extra nourishment. This will help keep them functioning at their optimal level. I couldn't agree more! At first I was devastated to learn Libby needed a GT. My perception of a GT was poor quality of life, but I quickly learned that it actually increased it.
He also said the best type of therapy for A-T children is aquatic therapy. A-T children do so much better in water! I know Libby sure loves the water and does very well in it! Something interesting he mentioned was that he is currently working with a group of engineers to create an exoskeleton so that the A-T children are able to walk like you and I. Very futuristic! I guess the military is currently using an exoskeleton for the marines so that a marine can walk across a desert, carry up to 300lbs and not even realize it! Very cool!
Mr. Margus also discussed a very "risky" surgery that involves removing the atrophying cerebellum. Some neuroscientist believe that if you can remove the part of the cerebellum that has begun to atrophy, then it will cease. No more damage can be done. It's sounded like damage control to me, but again brain surgery...very risky and no studies have been done. He wasn't too keen on this, but it is being discussed. Better to discuss than not to discuss I guess. This is a very new topic and no action taken on this.
Also, Mr. Margus and I discussed the fact that Libby takes Artane. It's a neurological drug used in Parkinson's patients, and I can tell you that it really does help her. She would not function without it. He says he has heard this in many of A-T kids. He has also heard that the side effects has caused many parents to stop using it. Each a-T child/young adult is unique. I'm for whatever works with the individual. I just thought I would mention it in case you want to talk with your neurologist about it.
I hope this has helped offer some insight for those of you that were not able to attend