:( in Bittersweet

  • April 17, 2021, 11:56 p.m.
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The dr got a hold of me today. Turns out Cos ekg was abnormal and to expect a call from the pediatric cardiologist at the children’s hospital for further testing… Marfans syndrome. can effect the heart. Its also considered rare. Less then 200K people diagnosed a year. So thats not a lot of people considering how many are in the world. Its a bit worrisome that its another check mark of my kid could possibly have this…

Ill know what the blood work says next Thursday. I know there is no reason to constantly stress over it till i get some results. It could totally all be unrelated.

But the thing is, its genetic. My daughter is tall and slender like .. really LONG . Then im looking at my own body. My toes are really long and slender despite being overweight. Then i tell my mom about it and she said she didnt think anything of it because her brothers are shaped like Co. So then you start thinking. I could actually be carrying this…

And one has to wonder. If we do genetic testing before teens have kids… if we know we carry this or that.. would we have kids? Would we knowing we had a huge chance of passing this thing down. If we knew we could pass down something that could kill them? Would we do it…
19 yo me would. 36 yo me… i dont think i would… But i cant say that for sure either. But not being a mom, you just dont know how it feels to BE a mom. I thought i knew what it would be like when i was a teen. Then i had a baby and it changes everything… If i knew they could die from this? I dont know if i could do it.

But here we are. Ive already passed down a shitshow of mental health conflicts between the husband and I. Now we are looking at the physical health.

My head hurts.


Lis April 18, 2021

hugs

Jinn April 18, 2021

Hugs!! Wait for the tests .

girl in recession April 18, 2021

hugs tough questions, you had no idea so you couldnt have made the decision and you made the best decision you could at the time. dont be tough on yourself!!

there's a podcast i'm reminded of where a woman with Huntington's disease (also genetic) made the decision to have children knowing she could pass it down, it was a heart wrenching story.

ChainedChrysalis girl in recession ⋅ April 18, 2021

my friend with chrones wont have kids because she knows she could pass it down. Its just hard to sit and think. I did something to my kids without knowing. And that sucks.

Small Town Girl April 20, 2021

I am so sorry! That's a lot of stress and a lot to think about for the kids!

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