Current Events > My neice has an incurable illness and i don't know who to talk to.

(+) Yeah! (+)

We found out yesterday.
Incurable, she could have 10 years or 0.
There's no way to know, but if she makes it to 25 it'll be an "extreme outlier" (doctor's words).
She's losing her eyesight and will eventually be in a wheelchair and lose all function before she passes.

I held her as a baby. I changed her. God I don't know what to do or who to talk to or what to say to my sister.
I don't know.

I'm just venting here, I don't expect anything beyond being able to scream into the void.

I'm really sorry, TC.

all you can do is be there for her.

Jesus man. I'm so sorry.

This is horrifying, I'm sorry to hear this TC.

g0ldie posted...

I'm really sorry, TC.

all you can do is be there for her.

BlazinBlue88 posted...

Jesus man. I'm so sorry.

StarDestroyer posted...

This is horrifying, I'm sorry to hear this TC.

Thank you. It seems silly but just saying it to someone and being heard helps.
It's also genetic, so now the entire family is getting testing done to be safe.

OMG, I am so sorry. I have daughters in that age range and I can't imagine how painful that must be.

bsp77 posted...

OMG, I am so sorry. I have daughters in that age range and I can't imagine how painful that must be.

She's not even a teen yet and she's legally blind. Even making it to 15 will be a matter of luck from what I've read.

No parent should go through what my sister and brother in law have to.

That sucks, sorry to hear that TC. I would be devastated if anything like that happened to my neices.

I hope you get to spend a lot more time with her, though it will never be enough.

Offers hugs

Help out the best you can. Spend time with her and tell her you love her. Ask her mother if she needs anything you are there for them. I went through a time caring for a friend about a year ago who had a long illness. The anniversary of her passing is tommorow and I know it's going to be hard. I really have noone to talk about it with though. It does get better.

That's horrible and devastating. I'm sorry TC. There's going to be a lot of grief, but all any of you can do is make sure whatever time your niece has left is as good as possible, under the circumstances.

COVxy posted...

That sucks, sorry to hear that TC. I would be devastated if anything like that happened to my neices.

I hope you get to spend a lot more time with her, though it will never be enough.

Lil_Bit83 posted...

Offers hugs

vycebrand2 posted...

Help out the best you can. Spend time with her and tell her you love her. Ask her mother if she needs anything you are there for them. I went through a time caring for a friend about a year ago who had a long illness. The anniversary of her passing is tommorow and I know it's going to be hard. I really have noone to talk about it with though. It does get better.

You're all very kind, thank you.
I'm sorry you had to go through that Vyce.

I want to see them as much as I can, unfortunately they moved back to the states (from Canada).
I'm in process of renewing my travel docs so I can go see them for a few weeks this year.

i am so sorry to hear this
i really do suggest you seek out a therapist to talk to over this to process your feelings over this. its the best course of action for your own mental well being
such a shitty and tragic situation

yusiko posted...

i am so sorry to hear this
i really do suggest you seek out a therapist to talk to over this to process your feelings over this. its the best course of action for your own mental well being
such a shitty and tragic situation

I'm considering it.
I know this will sound selfish, but I've got a different neurological disorder that I passed to my son.
And my case is so mild it goes unnoticed much of the time.
Why does someone like me get more time than her?