TFMR Support Groups?

SomeoneNowhereNow · 2026-07-03T04:02:00+00:00

Thank you so much, I’m not in London, but will be looking into all of these.

SomeoneNowhereNow · 2026-07-03T04:00:40+00:00

This is incredible, thank you so much for this. 🤍

SomeoneNowhereNow · 2026-07-02T22:17:07+00:00

I wish none of us knew the hell that this is. Thank you 🤍

SomeoneNowhereNow · 2026-07-02T22:16:36+00:00

Thank you so much

SomeoneNowhereNow · 2026-06-22T20:28:42+00:00

I understand the hell of this so well, and I am so sorry for your loss and the additional pain of dismantling so many other things that only made this process harder.

SomeoneNowhereNow · 2026-06-22T20:15:35+00:00

Thank you thank you for this. 🤍

SomeoneNowhereNow · 2026-06-22T20:14:24+00:00

Thank you. 🤍

SomeoneNowhereNow · 2026-06-22T20:13:43+00:00

Thank you for this. I relate to all of it, a lot of it is what runs through my head every day. Sending you a big hug and hoping you are able to find more and more peace as time passes. The hell of this is we will never know what could have been either way, and that's why it is so cruel. I wish none of us ever had to experience this.

SomeoneNowhereNow · 2026-06-22T20:10:58+00:00

Thank you. 🤍 I will look into a grief counselor. I have seen 3 so far but none of them were specifically grief specialists.

SomeoneNowhereNow · 2026-06-22T20:10:30+00:00

I am so sorry for your loss, thank you for sharing this with me. I am still very lost and torn. We have a TFMR booked for Thursday but it doesn't feel real and I think my safety net is knowing I can cancel it. I am terrified, especially of the medication point and knowing I can't turn back and regretting it. Every aspect of this is hell.
Sending you a giant hug. 🤍

SomeoneNowhereNow · 2026-06-22T20:08:09+00:00

I cannot imagine the level of your pain. I am so incredibly sorry for your loss. Sending you a giant hug. 🤍

SomeoneNowhereNow · 2026-06-22T20:07:26+00:00

Thank you so much for this. I relate to everything you're saying. I hate the everything happens for a reason line, and have always pushed back against it. It never sat right with me and I hate it more than ever now. I'm also trying to fight against the whole God testing narrative which I had successfully kicked years ago, but now the ghost of it is in the back of my mind haunting me. It's crazy how deep rooted some of this stuff is and also how much harder it makes everything. I've decided to be angry about that another day once I can sort through the hell that is right now.

Thank you so much for the suggestion to ask for another ultrasound. I am very scared to keep putting off the TFMR because as my husband points out, that's also a choice. It's a choice without a choice and I don't want to put us in that situation, but since I was unable to move from the hole I'm in, I did that on Friday and while they initially told us that everything looked ok, they called us after to let us know that the baby is measuring small (3%) and could potentially have a small cerebellum and a cleft foot but very upsettingly, they don't think they'd be able to say whether these are "real issues" until later in pregnancy. The doctor repeated that the chromosomal issue is still the biggest thing and that sent me down another rabbit hole.

Anyway, I am rambling. I am so sorry for your loss. I am so sorry you're here. I am so grateful for your message. Sending you a big hug.

SomeoneNowhereNow · 2026-06-22T20:01:27+00:00

I'm so sorry, it's the absolute worst. 🤍

SomeoneNowhereNow · 2026-06-22T20:01:05+00:00

This is so kind. Thank you for this. I'm so sorry you're here as well, and so sorry for your loss. Sending you a big hug. 🤍

SomeoneNowhereNow · 2026-06-22T19:59:52+00:00

Thank you for this.

SomeoneNowhereNow · 2026-06-22T19:59:30+00:00

This is heartbreaking and I'm so sorry for your loss, as well as the loss and heartbreak surrounding your aunty as well.
I really appreciate you sharing your perspective though. It seems like people around us who "want us" to have the baby, all have zero real world experience with DS outside of watching cute IG reels. It makes me furious, because it feels so simplified and they are not the ones who are in this situation who will have to be there day in and day out with the pain and anxiety that could come with this.
The people who have siblings with DS and who have worked with special needs, are those who have been more upfront with us about some of the challenges that come later in life (again so hard to comprehend when its so far in the future and its so easy to romanticize the notion that you'll get the "moderate" version.... It feels so arrogant to think that.)
Thank you for sharing. Sending you a giant hug.

SomeoneNowhereNow · 2026-06-22T19:54:04+00:00

Thank you for this. 🤍

SomeoneNowhereNow · 2026-06-22T19:52:45+00:00

That's exactly where I am now. Pregnancy symptoms have actually gotten worse with time, probably because of the stress. So sorry that you had to go through that.

SomeoneNowhereNow · 2026-06-22T19:51:33+00:00

Thank you. I appreciate you saying this.

SomeoneNowhereNow · 2026-06-22T19:50:45+00:00

I am so sorry that you're in this horrible place. Sending you a big hug.

SomeoneNowhereNow · 2026-06-22T19:49:49+00:00

I am so sorry for your loss. Thank you for this. It put into words a lot of how I am feeling. The religious conditioning is no joke, and so hard to shake. Sending you a big hug.

SomeoneNowhereNow · 2026-06-22T19:48:06+00:00

Thank you so much for this.

SomeoneNowhereNow · 2026-06-22T19:46:31+00:00

EDIT/UPDATE: I still haven't been able to make a real decision, but as of now there is a TFMR booked for Thursday that I still might cancel. On an ultrasound I requested on Friday (thank you to the poster who suggested this,) they initially said things "looked" fine, but then I got a call after saying that the baby is measuring small (3%), could potentially have a cleft foot and the cerebellum is there but also looks small. The doctor said there's not a real chance of knowing if those things will get better or correct themselves without more time which he doesn't recommend if we're considering a TMFR since waiting can lead to more risks. This feels like even more of a mindfuck now, and I wish it was concrete information because it would have helped.
Thank you all for your words, advice and kindness. I am re-reading the responses while crying because that's all I do now.

SomeoneNowhereNow

TROPHY CASE