My much longed for daughter was born with multiple congenital anomalies in May of last year. After a 6 week NICU stay, we withdrew care when it became apparent that further attempts to prolong her life would likely only lead to more suffering for her. Almost all of my friends and my sister were pregnant and have delivered (healthy) daughters without complication. Now they're in the postpartum/newborn stage. Before my daughter's diagnoses I was a postpartum nurse and I feel (or felt) a tremendous amount of tenderness for women in that period of life. It is vulnerable and raw and mostly unmarked in our society. The thing is, I didn't get to have a postpartum phase. I had an emergency C-section and got to see my daughter once before she was taken to the children's hospital with the level of NICU she needed. I pumped desperately, hoping my mother's milk would make a difference for her fragile gut. It didn't, in the end. I signed a consent for my 5 day old baby to have her tiny heart operated on, in hopes there would be enough oxygenation to get her through to grow big and strong enough for a more permanent surgery. She didn't, in the end. I would have given anything to hold her just one time without being terrified I would dislodge any one of the number of tubes keeping her alive. In the end, the only time I got to hold her without fear of those tubes was as she was dying in my arms.
Yesterday was the annual awareness day for one of her health conditions and I was sunburn raw. My postpartum friends with their perfect, healthy babies who can wear clothes and breathe without professional assistance were texting about their worries about weight loss after pregnancy and how hungry breastfeeding makes them, and I am so, so angry. I want to be understanding of their struggles, especially the friend who has a history of postpartum depression, but all I can think of is how much I wish I could live in a world where my big concern was my weight after pregnancy instead of spending each day terrified it would be my daughter's last only to have the worst finally happen. I'm trying really hard not to torpedo a decade of friendship, but the whole situation sucks.

My dear Leah,. I am so sorry to hear about your beautiful girl. I lost my Luke in November and the pain is crippling. When I started getting texts I felt bad when I didn't reply. I found myself apologizing for not responding quick enough or not having anything positive to say. I now find myself thinking that I don't have to apologize, why should we? Our loss is one that no one will understand and time, no matter how long, will never heal this loss fully. True friendship will understand this. I felt the same about ruining friendships, but I believe the people that really love us will understand. I send you unconditional love and support.

Dear Leah
So sad to hear your experience, your honesty touched my heart and remembered me of the horrible pain. We know what you are talking about, your feelings and behaviour are totally adequate. In these cases I kept a distance and usually people comprehended. Some friends have returned, some didn’t. That’s life after. Don’t be hard on yourself if others don’t understand. Sending you strength in these hard times.

Leah-

My situation was similar to your’s in many ways (stat c section, NICU, surgery, withdrawing care, friends pregnant at the same time), I think the addition of being in healthcare, which I also am, makes it harder to set boundaries with people. I have found that clear boundaries, not subtle hints, but literally saying “I cannot hear about this,” has worked the best for me. But also just acknowledging to myself that I am a different person then I was before we had Gabe and that that’s ok. I am sending you lots of love.

-Pam

Thank you everyone. I think I needed a reminder that I am allowed to need not to hear about these things. For me, grief comes with so much guilt (that I couldn't protect my daughter, that my sadness makes me hard to live with, that it clearly makes others uncomfortable) that I can lose my perspective. So much of the advice I have seen and read around grieving my daughter boils down to "people don't know what to say, be patient with them, help them figure it out" that sometimes I feel like I am not allowed space for the enormity of my own pain. Pam, your thoughts on seeing this is a boundary issue was particularly helpful. Most of all, thanks everyone for understanding. I feel a bit less alone now.

Leah,

I hope you come back to this thread. Even thought you’ve gotten wonderful replies. I wanted you to know that I really feel for you in this circumstance. How ironic that you have witnessed such a literal change in your perspective, to go from having empathy and care for normal postpartum woes to not being able to hear them without complex difficulty. That speaks to you so much. Not in a negative way, but a positive one. Because I’m my opinion, even those these postpartum issues are normal and real, they are also very much inflated and milked in society. I wonder sometimes if it is all a self-fulfilling prophecy. Yes, it’s hard in this way and that way. But if you keep saying it’s hard, others keep talking about how hard it is, and it’s supposed to be hard: then it’s going to feel hard. I think on this side of things, you realize really how much support these women do have, it’s a dime a dozen. But what is really hard? Not being able to even focus on being postpartum because you’re fighting for your child’s life or grieving their death and in a state of trauma. For these friends to think they can go on asking questions about their newfound postpartum state is highly insensitive and inappropriate. And guess what? You don’t have to guide them. To educate them on how to be an appropriate friend. That is not your job. All you can do is be there for you. Be honest about what you can handle. Don’t people-please. You’ve got the added dilemma of people expecting you to be medical and clinical and that is a cruel added layer of complexity. But you can’t go back to being that person again. As me and my friend say, our empathy scope is so much larger and deeper but only into the truly painful areas of life. Not in the mundane normal things. Those things are small. And I know others may think that’s insensitive of me but I truly do believe normal postpartum complaints are small. Go easy on yourself. Tell them you can’t talk about it. That you’re grieving. If they are meant to be lifelong friends you will know. The last thing you need is paranoia that you’re not grieving correctly or being a good enough friend to them. Love yourself first mama. You’ve been through hell and have to survive each day without your sweet daughter. That is a big job in itself. I’m so sorry.

This post you may like.
http://www.glowinthewoods.com/blog/2017/2/6/when-all-we-have-are-words

Anon,
Thank you for your support and encouragement. I actually read the article you linked to yesterday and felt so seen. I have felt so much internal and external pressure to be gracious to others in their awkwardness around my grief that I find it hard to set boundaries around my own needs. I am so thankful to have found this site where I can feel just a bit less alone on my experiences.

I totally hear you. To me, any complaint related to hardship, grief or dissatisfaction of their living child sounds like complete bullshit. Like you, a bunch of my friends are coworkers are pregnant or have lil babies (alive). They have offered support but they don't realize how much it hurts just to be around them, knowing it's just a matter of time before they say something triggering. I'm pissed. My baby girl died in utero at 41 weeks and I got to hold her but I'd give anything to put up with any amount of her bullshit today!