It’s 5 o’clock.
You spent the night with Nadine, who is watching over you while we try to get some rest.
Your mom stays with you until 11pm, then I take over from 3am.
You’ve just woken up screaming from colic.
Each time, I put you in the position that seems to relieve you and massage your belly.
Luckily, today it only lasted five minutes.
If you don’t go back to sleep, we’ll take our 5-minute morning stroll in the condo garden, just like we do every day.
Yesterday was a busy day.
Your mother has gone to the public hospital to try to open up new rights for you.
She stayed there most of the day.
For my part, I tried to work.
I say ‘try’ because even with Aunt Geraldine at home to help you, there are always interruptions: doctors, milk, medication… every thirty minutes you have to stop.
It’s hard to concentrate, and sometimes frustrating not to be able to move forward as I’d like.
I put a lot of pressure on myself to pay all the bills.
I hope your mom’s efforts and mine will eventually lighten the load.
Last night, we also received a response from the organization that is supposed to help us.
I had asked him to re-evaluate your assistance under the PGC (special plan for chronic illness), deemed insufficient (and dangerous) by several professionals.
All we ask is that you have access to more care, like motor physiotherapy, or even just an automatic milk dispenser, because today the system we have is manual and dangerous, and sometimes makes you vomit. We also ask for vaccines, medication and special milk. In short, everything directly related to the fact that you’ve been discharged from their hospital with severe motor retardation and chronic lung disease.
The first time, they refused, on the grounds that I had used the word“homecare” and that they weren’t obliged to cover that.
The second time, I removed the word… but they still refused.
So I went to the Brazilian ombudsman (ANS) and the ombudsman forced them to answer me again, and their answer was the same as the first.
They don’t seem to understand, or pretend not to.
Worst of all, they say they can’t do it because it’s “homecare“, and in the same letter, they admit to already doing some of it as part of the PGC (special plan for chronic illness).
It makes no sense.
And to please Dad (it’s irony) they end by saying:
“In addition, this healthcare operator specifies that her mission is to protect the health and lives of her beneficiaries.”
I find it hard to understand how people can do this to humans, let alone children…
You know, son…
If one day you work in a profession where you come face to face with the suffering of others, even if you need your salary, GET OUT!
Keep your dignity. Respect others AND especially children!
Your dad is not a violent man.
I’ve always avoided a fight.
But these people taught me one thing: in life, you can’t always be nice to everyone.
You have to know how to stand up for your rights, even when you’d rather be left alone.
Fortunately, there are plenty of angels around you too.
From the beginning, they have sent you and us the strength to move forward, filled with love and hope.
I love you, Son.
We can do it!
