Saturday, 21 July 2012


Yes that is correct.
I am very puzzled at the moment.

Everyone is telling me to "just enjoy it", but I can't.
I need an answer.
I need an answer so that it continues.

It is about Amelia.

Her physical skills, happiness, energy levels, sense of humour and speech have improved greatly in the last 18 days.


I am definately not complaining about it but I need to continue whatever it is.

I will list for you the reasons I have come up with.....
(and yes I think of new ones constantly).

1. I have resurfaced from my recent depression.
2. Scott has just finished 2 weeks annual leave and was more motivated and happy while home with us.
3. 2 weeks break/rest on school holidays.
4. Sustagen nutrition drink daily.
5. New herbal tablet crushed into sustagen at least every second day (with ingredients I have never heard of. Some from Indian plant roots).
6. A plateau in her decline (very common for A-T kids at 9 years of age) and she has been able to regain her footing on life.
7. Her pesky little brother slightly improving in his behaviour towards her.
8. The new puppy.

The list can go on and on and on and on .........

Amelia has just returned from her fortnightly speech therapy session.
The speech therapist is now puzzled.
She heard Amelia communicate today.
It was better than at anytime in the last 12 months that we have been seeing her.

Last night we had a special visitor.
It was late.
It was the end of the first week back at school for Term 3.
Amelia SHOULD have been exhausted.
Instead this visitor saw the sarcastic and full of humor child that has recently appeared.
At one stage I noticed my visitor crying.
When I questioned what was wrong, the response was "I have never seen her this happy".

So fingers crossed it continues...........
(but I still need an answer !!!)


Wednesday, 18 July 2012

School Holidays

My apologies for not writing for so long but we have been really busy AND I have taken the time to get myself back on track.....mentally.
The positivity has taken a while to return but I am very happy to report that it has !

Scott has taken two weeks leave so he has been a wonderful support in getting us out and about.
The 24 hour assistance with the kids and the house has also been a saviour.

Last week we had to take Tom to a "sibling day" at Very Special Kids in Malvern.
This organisation has recently accepted us into their group.
They have a "house" set up for children with "life threatening illnesses".
After having a tour last week it can be best described as a nursing home for kids.
There are fully qualified nurses constantly and a doctor on call.
Volunteers are on a roster and the children are free to play wherever they want.
Amelia loved the "sensory room".
Lots of colour, lights and bubble machines.
There is also a music room, xbox, TV, full kitchen and full time cook.
There is 8 bedrooms that can be booked by VSK families for respite.
For those like me, there is a parent accomodation house out the back.
After we had our tour, we had a talk with the staff.
I explained that I do not need respite and would like to keep the option available for maybe sometime in the future.
Scott and Amelia were horrified.
Amelia WANTS to stay on "holiday" and Scott wants her to come and enjoy it.
It is a 3 month ahead booking process so I guess I better book her and her father in sometime (yes. Scott will attend the first one!).

Tom spent 4 1/2 hours at the sibling day where the theme was "Disneyland".
When he came out he was exceptionally quiet.
(Normally we would take him to hospital because something must be really wrong).
We got little bits of info from him and when he got home he began unpacking his bag.
He began playing a game with Amelia.
A game about "My sick sibling".
Questions about "My sick sibling".

Now I understand why he may be so quiet.
We do not refer to Amelia as "sick".
He said that he will go next school holidays "if you want me to".
We will wait and see........

On Thursday and Friday of last week, Scott insisted that we all go and stay at mum and dad's empty flat in the city.
We all left begrudgingly and negative.
We returned happy and positive.
We had dinner at Chinatown and spent the next day walking around Albert Park Lake.
Awesome family time and wonderful to break the monotony of home.

One conversation that I will not forget with Amelia and Tom will stay with me forever.
The morning of leaving to go to the city, I was out of bed at the same time as the kids.
This has not been happening lately because of my depression and exceptional tiredness.
When I have stayed in bed (weekends and school holidays), I always get up to Amelia on the couch, watching TV with her dressing gown on.

On this particular morning last week as I escorted her to her bedroom, I began putting her dressing gown on.
Tom casually said "I normally do that".
Later in the car I questioned what he meant.
He said "In the mornings I take Amelia and help her on the toilet. Then I put her dressing gown on".
At this point Amelia interupts "He always takes me to the couch and puts the telly on for me".

The overwhelming battle of whether to feel like an incredibly bad mother or be so very, very proud of our 6 year old boy has been on my mind ever since.