Getting Back

Hello Friends,

I am happy.

I know this is a major shock after the previous blog.

It is difficult though being an advocate for a child that you could lose at any moment.

Medical professionals were not listening to my concerns and the concern of waiting for possible new cancer results did their toll on me.
The fact that a common cold can take her away has me always on high alert.

Amelia and I have not been separated for 7+ weeks.
I have caught her projectile vomit, cleaned it off her and the couch and in her very long hair everyday for 7+ weeks.
I have watched her eat only 2 mouthfuls of food every meal time or sipping on apple juice to keep her Type 1 Diabetes within a safe range.

I was beyond angry at the medical profession, for not helping me get her better again.
All my emails and phone calls were not returned.
Unfortunately the kids heard me call them names after one phone call.
They proceeded to tell Scott what    F*#@ D%$#@!    RCH were.
Oops.

Last week we arrived at emergency after 6 vomits in one day, and I finally felt like we were heard.
The doctors that we know so well, looked at Amelia lifeless on the bed, and me 100% exhausted on the seat next to her and finally told me they were going to help us.

We actually had the best stay in hospital yet.

I have also been more assertive and direct towards anyone in my entire lifetime.

"We are not leaving until you find an answer".
"What about this link and this suggestion".
"NO. You are not doing that to her".

Challenge (cancer organisation) and the nurses were all incredibly kind and nurturing.

Amelia was beyond AMAZING with testing that was humiliating and painful.

Scott and Tom and my dad went straight into "the routine".

We have left with a possible diagnosis of Gastroparesis.

I am yet to determine if it was caused by A-T degeneration, T1 diabetes diagnosis or flu and pneumoccal vaccines.

I am not anti vax AT ALL (children not getting these diseases keeps Amelia alive), but T1 and the vaccines occurred 1 week before the vomiting began.

But we have come home happy with a new regime that may be working.

Scott and Tom are happy.
We are possibly getting used to these separations.

Tonight I was nominated to take Tom to his Football awards night (Scott had already done the basketball and football game).

I normally stand in the corner alone in previous years, because I struggle to socialise and talk about anything other than Amelia's and Tom's health issues.

Tonight I did well.
I talked and listened.
I enjoyed being out.
I ventured over to people rather than wait for them to come to me.

It was 1 hour, but 1 hour where I pushed myself to try.

I was so proud to hear about Tom as a footy player but so much MORE proud to hear of him as a nice person on the field.
Helping players up that have fallen, patting team mates on the back and offering praise and where to stand.
(not so much kicking a player that had kicked his friend!).

They spoke like they knew him almost like I do.

These kids and players have been with him for years but I have never let the adults beyond my "guard".
Maybe next year I will attend the parent events more.

I need to get out and socialise more.

Someone very wise recently said "You are losing Amanda".

I realise I am. That is why I have become so weird lately.

I now realise how lost and absorbed I am in each child's health.

I actually do not have a life or an identity anymore.


I have to finish with something about our sweet Amelia though......
In the recent Pandora catalogue she found a charm (amongst 300+) that is a love heart.
Tonight she asked me if we can go and buy it.


It says "YOU ARE SO LOVED".


Thank you for making her feel that way.
xxx