well that was a fun DCF meeting

So Kid has a myriad of health and behavioral issues that previous social workers had assumed was because she was born with methadone in her system and was a premie baby

And this new social worker finally found all her paperwork. Her name had been misspelled by her mom.

and she probably has a genetic condition that's going to shorten her lifespan

It doesn't have a cure, it's chromosomal. But it hits all her markers and I'm like

Yeah

So we're gonna go to Olive Garden and talk about it and when I'm alone I'll cry and then get to work on it.

It's not a dramatic life cut but it's about 20 years less than what she should get and I'm fucked up about it.

And she wants to be a mom so bad and it also causes sterility in almost all cases.

Tough day today. Really tough.

Well shit. You say 'probably' so it sound like the s. worker didn't actually find a kryotype?

oh my god...that's so horrible 8C I'm so sorry... all the love and hope for you and kiddo

this poor girl, I hate this for you guys even though I know she's gonna be really intense about the life she does have in front of her

I'm sorry

oh christ, I can't even imagine, I'm so sorry you're dealing with this, but I'm so fucking glad she has you

skipthedemon: she had a genetic test done but then changed guardians but it checks out with all her symptoms. We’ll get it verified but it’s looking that way

oh man

im so sorry

It’s weird, I feel both like she was robbed but also that it makes a lot of sense? Like now that we were going through symptoms she cuts in with “oh is this why my bones hurt?” Which was NEWS TO ME

Idk maybe I’m still processing but it feels like not a lot has changed and it was nice to put a label on it.

having something to actually explain her symptoms, and to wave at doctors to get them to take her seriously, is potentially going to make things now easier

yeah, that

Oh man, that's rough. But, yeah, sometimes having an explanation helps.

and as of now it might mean a shortened lifespan, but who knows in 20 or 30 years. MIL's best friend for literally 60 years just passed away last year after outliving her diabetic life expectancy by over 40 years. She literally got dinners and recognition from state and national diabetes organizations for beating her diagnosis

thats....true

huh. i never thought about that

So now her boyfriend is freaking out because the average lifespan is 21 and I had to explain to him that that includes all the babies who couldn’t regulate their body temperatures and once she passes that age she’s generally in the clear for a while

Now everyone in the system and her school who doubted her symptoms need to feel really bad about themselves, but oh man, poor kiddo. That's such a rough thing to have on her shoulders.

does this explain the migraines?

Yeah, and a lot of other things going on

aha

well yeah at least theres an explanation

aw, man :c I’m glad y’all have a diagnosis, at least

this isn’t intended as a silver lining by any means but her new social worker sounds uhh better than the last ohe

Diagnosis is scary but helpful to have for sure. Now you have something you can point to for therapies/accommodations/treatments and even sanity check for "why are these things happening?" And that's a big thing.

And medical science really is pumping out new treatments for all sorts of genetic conditions constantly. Both therapeutic and curative. Like look at as an example cystic fibrosis, a genetic disorder that used to be a "lucky if you made it to adulthood" disease and over the past two-three decades they've made leaps in quality of life and life expectancy.

it's a good thing she has you on her side but damn

love you all <3

Yeah. And her social worker was hopeful she could get disability and help finding a job.

Oof, I'm sorry to hear about the diagnosis but I'm really glad that she's got an explanation. I hope she'll be able to get treatment that can really help her out now, too.

(seconding the fact that it sounds like this social worker is a LOT better than the last one.)

(yeah.)

She 100% is. Also I might still be in shock idk. Gonna talk it over tomorrow, yay therapy Thursday

I feel like I should be feeling more but mainly it’s just “oh. Okay. Well, this is a thing we’re gonna be dealing with now and okay”

sometimes really big things can hit you that way while you process

Yeah, totally

there might also be patient support networks she can get connected with from her doc/online

these types of groups help families too