u/SomeoneNowhereNow

I’ve seen a couple people post that support groups helped post TFMR but I can’t seem to find one that is currently taking place. Can anyone recommend one?

I’m one week out from our D&E and the waves of emotions are unbearable. It’s very different from the panic that was screaming before, now it feels like a nuclear bomb went off and I’m surrounded by ash and silence (and grief and guilt and fear and regret.) The worst part is that I’m the one who made the nuclear bomb finally explode. I know that holds zero nuance and isn’t exactly true under the circumstance and what our baby was facing, but logic literally cannot penetrate the feelings and pain right now.

Would appreciate any recommendations. I feel like the rest of my life will be this heavy and I don’t know where to go from here.

Everyone here has been so kind to me, I just wanted to post an update. In the responses to my last post (about feeling dead before even going through with a D&E) one very kind human here told me that I could ask for an additional ultrasound to see if it gives me any peace of mind moving in one direction or another.

I will forever be grateful for that advice. My doctor saw that I was still struggling and he allowed me to return on Tuesday and he spent 90 minutes, triple-looking at everything.

We have new info. We found out that baby girl is very small and doesn't seem to be developing properly. (2.6%). Her cerebellum is also small and not near where it should be, they can already see an issue with her heart. All of this was completely new information because at our 14 week scan (we're at 18 now) we were told that on the US everything looks perfectly fine, and she had zero obvious markers for her diagnosis (T21.) Being told she had no obvious physical "issues" made deciding what to do even more torturous. I couldn't bear the thought of a TFMR if everything "could" be "fine."

While we're devastated about every part of this, the new information has brought us to today. This all seems like too much to ask of any little baby to bear.
The D&E is this afternoon she kicked and danced all night, and I couldn't sleep at al.
I am literally shaking. I hate everything and I don't know "how" to do any of it. I am so scared.

Please, please for the love of everything be kind.

I have read what might be every post in this forum for the past month. My husband and I have been trying to "make our decision" regarding TFMR for T21 for a month now. Initially I was hoping to be able to "decide" or find any type of intuition or peace regarding one side or another, but that was very naive, and not only do I now realize that is not coming - but it has gotten much, much worse.

Now, instead of being stuck in the middle between two impossible options, the two options are now choking me on both sides of my face, and they feel like they are electrocuting me. I wake up with panic, every single day. Physical panic symptoms. It's almost impossible to get out of bed. I don't wash my face. I barely leave the house. I am not functioning very well and I absolutely do not feel like I meaningfully exist in any way. I keep getting the thought "I feel like sand" because that's the only description I have.

I was raised in a deeply pro-life background. I have kicked a lot of the propaganda and framing for much of what I was raised with, but what has been hardest for me to come to terms with is how to reframe my outlook on the sacredness of life.

----Please understand what I'm saying here ---- I'm NOT coming to this forum with judgment for anyone who has done this, or thinking I know best (BECAUSE I KNOW NOTHING) - I am trying my hardest, from the bottom of this well of hell to find actual peace in this idea. That this is still a loving thing to do.

This whole process has been a huge dismantling of self. I feel like I have none of the tools I usually have (strength, intuition,) I literally feel like I have no idea who I am anymore.

I honestly thought that by this point and the countless posts that I have read from people who TFMR'd and the various family members of people with DS that I spoke with would have created a pull inside me to decide to move forward with having our baby, for better or worse. And now - I try so hard, but I just cannot see it. I cannot see that world. I cannot see that life. I have a 4 year old son with my husband (my son desperately wants a sister) and no matter how I try to imagine it, I cannot see it. But I am terrified, terrified beyond belief to go through with a TFMR. Like tangibly go through with it. I feel like this might not be as impossible if the baby was inside my husband (though still hard and heartbreaking.) I just don't know how to DO it.

Ironically, this has not pushed me in the other direction either.

I have seen three therapists over this, including a TFMR specialist who pointed out that high risk is high risk for a reason, and even sticking in doesn't guarentee a good outcome.
What is almost funny is that the amount of panic I have toward the idea of sticking with a high risk pregnancy, of waking up with this fear every day for the next 6 months, of having to give birth surrounded by pediatric surgeons, and then not knowing ANYTHING medically..... these thoughts literally make me feel like I will die. I have a lot of medical anxiety in general, and this feels beyond my grasp to even begin to handle.

From the discussions I have had with people who have people with DS in their lives, what we keep hearing over and over and over is the hardships that tend to come later in life. My husband and I are in our 40s. I am terrified for who would take care of our daughter later in life when we are gone. I realize thats not something I can plan for right now, but how is it not something to consider when trying to protect someone in a world that is not kind of accommodating to both the disabled and women? I have heard from people who say they love their children more than anything but would never have "chosen" this for them because of all the pain they watch them go through.

I feel like all I see is pain everywhere.

The past week I have felt my mental health really plummet. I cannot imagine feeling any type of joy ever again. I do not look forward to anything. I would never hurt myself because I love my son more than anything and I would never ever ever leave him. But if he wasn't here, I feel like dying would be easier, and I keep seeing "easy way outs". I understand how insane this sounds. I see it. I know. But I don't know how to move in any direction, and I am wondering if anyone has advice on how to do it, or frame it, because I can't stay here anymore. We are having another conversation with the family planning doctor tomorrow and I honestly don't know how to even speak to her.

Please help.
Please be kind.