Hello Awesome People.
(apologies! The blog seems to like MASSIVE spacing tonight!)Massive hugs to all those affected by these horrendous bushfires, in Australia, and the defenceless animals in its path.
We are only surrounded by the smoke and the news portraying to us your horrible anguish.
We send massive love and hugs.
Today my post is about my Tommy with the BIG personality (as I am constantly told!).
It is now 2020 and Tommy is 13.5 years old.
He was 5 weeks old when Amelia was diagnosed with Mild Cerebral Palsy.
Tom was 4 years old when Amelia was re-diagnosed with Ataxia Telangiectasia.
He was 9 years old when she was diagnosed with Ovarian Cancer.
Christmas Eve 2013
HE was diagnosed with Type 1 Diabetes.
"His Blood Test has returned with a highly dangerous level of glucose.
Get him to Emergency immediately" Scott was told by our local GP on the phone.
As Scott left to take him, I felt my legs, at the front door, collapse underneath me as he reversed out of the driveway.
I lay on the front door ramp (built for Amelia) sobbing.
I could not possibly find anymore emotional energy or coping skills to deal with this.
I knew nothing about Type 1 Diabetes.
I could not possibly cope with ANOTHER diagnosis.
Scott posted a photo of Tom on a drip in Emergency to Social Media.
3 people on this page arrived at our house immediately........
with young children themselves.
Santa's presents were wrapped by them
(Tom may have accidently ended up with pink underwear!).
As I went to sleep Christmas Eve 2013 on a crappy Hospital bed, next to Tommy, I cried.
The next morning Tommy awoke to a Santa sack full of presents.
"I am not opening them until Amelia gets here with hers" he said.
Suddenly nurses start arriving with gifts from someone "that delivers gifts to whoever is stuck in hospital Christmas Day".
Books, football, water pistol etc.............
I think Tommy (the only inpatient) and the nurses destroyed the Children's ward's Christmas decorations with the football that morning!!!!
We waited in that hospital 5 days for the Diabetes staff to return to work.
We had amazing friends and family visit over such a massive Holiday break.
We may have walked around with undies on our heads
(anything to stay sane......or not).
Fast Forward to a Family Diabetes Victoria CAMP in May 2014.
At the first meal, Tommy and I stood in the middle of a room full of 60 Diabetic kids all giving themselves finger pricks and needles at the same time.
"If this doesn't make you feel normal, nothing will" I may have said to Tommy!
This is where I found like minded alcoholics.
We may have had a night after the children went to bed to drink and talk.
But you did not hear that here.
(Please note: No more alcohol here!).
Then Tommy started attending Camps on his own.
The first one was like a Hollywood movie, with him being pulled away by staff in slow motion and us slowly waving and slowly walking away.
We went home and sat in silence for 3 nights.
As we arrived back at THAT camp (2 hours away) to pick him up.........
I was helping Amelia out of the car, in her wheelchair, and heard
"Muuuuuuuuuuum. I am not coming home EVEEEEEEEER".
Wasted that time without him, didn't we?!?!
8 years old and he met heaps of kids and adult volunteers (all Type 1 Diabetic themselves)
I was drowned in comments from kids, parents and adults about how "awesome" Tommy is.
"BIG personality, and AWESOME".
and also so began the initial friendship with Noah.................
Tom has now attended 5+ camps with Diabetes Victoria.
EVERY SINGLE TIME he comes home with better thinking and ideas on how to take care of his Diabetes.
And new friends......
AND still always Noah.
I had to literally drag him to the last camp in September 2019.
Too cool for school.
BUT he needs constant reminding that he could be blind by 30 years old or lose a limb by 40, if he doesnt look after himself.
BUT me, myself and I am in a difficult position.
I have a child with a terminal illness that has a MASSIVE sweet tooth.
Quality of Life AND Amazing Life AND No regrets at the end.
Amelia wants a donut, she can have a F'n donut!
BUT TOMMY can't.
It is not fair to place it in the pantry in front of him and tell him he cannot have it.
WE ARE NOW ON OUR 3RD HIDING PLACE!
I had great difficulty getting Tommy to this camp last year (Sept 2019).
Massive arguments, where he got other family members involved to defend him.
I showed these family members his high levels and missed checks.
That was a great way to say "shut the fuck up. He HAS to go."
I love and respect and listen to my family and friends, but THIS was something I knew Tommy needed.
He went.
He stayed.
He made friends, with lots and reconnected with Noah.
He had fun.
Below is a picture of lots of different Type 1 Diabetics.
Someone diagnosed at 11 months old,
someone hospitalised at 11 for severe anxiety over levels,
someone who does not care about their levels and doesn't bother,
someone diagnosed just last year,
someone diagnosed at 7,
someone diagnosed at 9,
kids on pumps,
kids on CGMS,
kids on syringes,
kids on pens...........
Someone that I told Tommy about before camp......
"He is shy and highly anxious about diabetes".
When i picked Tommy up he laughed about that child and said
"As soon as we started playing basketball he loosened up and started to trash talk.
I knew he was one of my people!".
And 6 years later, still Noah.
And MY kid who has only ever known a sister with a Terminal Diagnosis.
They all know this about each other, straight off, and they dont give a SHIT.
Needles, pens, pumps and finger pricks 4+ times a day.
They are Type 1 Diabetic together and that is all that matters.
Love and Hugs xxx
