Hello dear friends,
Merry Christmas!
I am so over listing my pain and sorrow of virtually caring for a child in constant palliative care.
No one wants to hear it and I know longer want to write it.
Amelia is SO much more and so am I.
No one will ever understand and I would never expect them to.
From now it will be facts and positives only!
ENJOY!!!!!!!
It is after midnight in this little house of ours and I want to wish everyone an awesome day tomorrow......................................................
today?!
It has once again been a "topsy turvy" year in this house, but as we all now probably realise,
it always will be.
7 years ago today we were mourning the diagnosis of a terminally ill daughter (aged 7).
Still alive aged 14 now!!!!!!!!!!!!!!!!!!!!!!
DOUBLE the time.
4 years ago today we were living in hospital with the diagnosis of a son with type 1 diabetes (aged 7).
Still as active and loud as ever now!!!!!!!!!!!!!!!!
The medication and food diary becomes routine for both kids!!!!
EVERY year Amelia plans Christmas Eve and Christmas Day as soon as her Birthday finishes.......
In JUNE!!!!!!
We have completed her "list of requirements for Christmas" to her happiness..... I think so far this year!
First is Santa's list.
Next is Santa's runway!
Santa's runway was quite extravagant this year.
It involved 3 houses with google map drawings across the road.
(arrows, please go here next; pictures and offerings of carrots...... quite high tech).
Unfortunately due to circumstances out of our control this year, Tom found out about Santa and his true magic.
None of us were near the stage yet (especially Tom), but it happened.
After 48 hours (and constant questions of "EXPLAIN?!") our amazing neighbours looked after Amelia while we explained "STUFF".
After 2 days of devastation, Tom did what he always he does.........
He turned it into a positive.
He would help us be Santa.
Be SANTA!
His ideas and his excitement was inspirational.
Tom has insisted on wrapping ALL of Amelia's Santa presents.
At 10pm tonight he was helping build the swing set across the road with massive enthusiasm for kids 6 years and younger!!
He insisted on helping me grate the carrots and leave the reindeer poo at all the neighbours driveways (something I have done for years).
"Teach me please" he laughed!
So we did it whispering!
But as Scott and I held Amelia's sack open and Tom excitedly threw everything in at 11:30pm,
I really started crying.
I was seriously pathetic!
"Why" they both asked.
"Because this is huge and the end of something special" I said.
"And he is taking it too damn positively!!".
"It is ok. All my friends in class explained it nicely".
"Thank you mum and dad for letting me help you with this.
I now know how much effort you go to.
I know this is special and important for future memories for you and me about Amelia".
Tom said.
(I seriously do not make this shit up. Tom will read this one day and verify).
Sometimes what he says sounds so damn rehearsed, but it is genuinely him.
To be so sad and devastated and then to be so positive!
Finally....
No one knows except 5 people....
Not even Tom...........
RCH want Amelia "swabbed" for an antibiotic drip for an infection under the skin.
It was suggested in a call on Friday 22/12/17.
This would mean a stay in hospital.
"Not Christmas" I said " PLEASE".
"It would destroy her. Please wait till next week".
Thank goodness they listened.
I am just on watch for increased tiredness and major loss of appetite and fever.
(mastitis like affect).
We are taking a general oral anti while we wait.
We are now seeing them 28/12/17.
We are going to SO enjoy watching Amelia open the presents from Tom and Santa tomorrow and cross everything we do not need to move to a ward next Thursday.
Amelia has waited 6 months for today!!!!!!!!!!!
MERRY CHRISTMAS EVERYONE
PLEASE appreciate every single day.
LOVE to you every single one of you.
This is probably my Grandpa's last Christmas Day.
But as he said
"I have had 91 of them.
I have lived my life.....
Amelia is only 14".
xxx
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