Hello tolerant friends,
So busy here now with needles, finger pricks and carbohydrate counting for two totally different kids.
The effort to keep both kids within a "safe range" is very tiring!
My role as a carer seems to have been taken to a whole new level.
Toileting, dressing, feeding, daily school phone calls, hospital phone calls and my most important role......the emotional health of each child.
Amelia has taken to diabetes in a way that I could never have predicted.
There has never been any tears and she questions her carb intake for every meal.
She requests to know her BSL level and check the insulin dose every single time.
She is asking for full knowledge and as much control as her body allows.
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Last night we were lucky enough to go out for tea.
Tom has always demanded to go out to the car to do his needle, when his food has arrived, due to noise, distraction and people watching.
Last night as we were traveling in the car, Amelia asked him to "conquer his fear" and just do it at the table with her.
(She may have also said "don't be a scaredy cat and suck it up")
As we sat at the table, Tom quietly did his finger prick and needle.
I was SO proud of him and have thanked Amelia today for encouraging him.
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Today I have received a rather important phone call about Amelia's medical care.
I cannot speak too much about it, but I have been asked to a meeting to address indescrepencies in previous years.
Advocacy for Amelia's care has become quite serious recently and I have been asked to document and present these issues in where issues were ignored or overlooked and we could have possibly lost her prematurely.
It will be presented to possibly influential people.
Quite big, but I will continue my study of blood test etc.
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I also have some exciting news..........
Recently I wrote about the ridiculously high prices associated with disability.
The humiliation of approaching charities and organisations to assist with funding for wheelchairs, shower chairs and the like.
Families that already exist on low wages due to the stress and demand of this kind of life.....
I have had a quote for a new manual wheelchair for Amelia since LAST September.
Almost $9,000.
A chair fitted to her inability to keep her head up now, sit without sliding to either side, sit with her legs and feet in a 90 degree angle and sit for hours on end without getting back and buttock (Amelia and Tom would say BUM! and laugh) pain.
After numerous places denied funding, I wrote a blog on here explaining another part of life for a family that has a child with a disability.
The humiliation and pride that diminishes for the parents that cannot provide for their own child.....
Someone that reads this blog contacted a friend.
That friend rang me directly.
They said "I have been sent a link to your blog. We will fund it for your daughter".
I am now able to say that all the paperwork is completed, (Amelia being in hospital put a delay on it), but the manual wheelchair has been ordered!
The person on here AND the organisation would prefer to stay anonymous, but the amount of appreciation and love we have for these people is beyond anything we could describe.
Amelia will soon be sitting in a chair that will not be creating the new diagnosis of scoliosis to get worse.
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Recently Amelia announced that if Bruno Mars and/or Ed Sheeran were to ever have concerts in Melbourne, she would like to push through her fear of crowds and loud noises to attend.
Of course both had to go on sale within weeks of each other after she spoke!!!!
Bruno Mars went on sale and an awesome friend helped me sit on hold for 1 hour (because I was driving to a prebooked luncheon with Challenge!) before we finally got tickets.
Ed Sheeran goes on sale for 4 days later and my brother and I sit on hold for 3.5 hours to get tickets.
We are all separated, but we can work with that.
ALL Christmas and Birthday presents are now done from close family members for the next 12 months!!!!
Amelia then announces that she may like to finally use her "Make a Wish" to request to meet him.
HUGE!
This is still undecided.
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Finally, next week, Amelia goes on school camp.
She is incredibly anxious because of the new diabetes diagnosis.
She has not experienced "a low" yet and none of us can convince her that she will not end up in a coma if her level drops lower than normal.
Tom has tried his absolute best to convince her she will "feel it" before it gets to that stage.
The ratio of insulin needles to carbohydrate intake is difficult though.
Amelia is analysing EVERYTHING about this camp.
We have reassured her about phone calls, meetings with the school and us being only 20 minutes away.
Nothing is helping.
But tonight she blew Scott and I away.
She pointed at the Itinerary for the camp.
"Talent Show".
She said "I want to sing a song by myself".
Scott and I instantly think of her anxiety and hate of being "centre of attention".
I want to sing "Dear Life" by Delta Goodrem.
"Can I practice in front of you?"
Please take the time to listen to the words below.
Please imagine what they may mean to a 13 year old that has been through as much as Amelia has been through.
Tonight Scott and I crumbled while wondering where and how this child has been created.
She sends so many messages and communicates so much that is beyond what she appears to be........
https://www.youtube.com/watch?v=9wPnGY5PlZY
xxx
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