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Parents of lost babies and potential of all kinds: come here to share the technicolour, the vividness, the despair, the heart-broken-open, the compassion we learn for others, having been through this mess — and see it reflected back at you, acknowledged and understood.

Thanks to photographer Xin Li and to artist Stephanie Sicore for their respective illustrations and photos.

for one and all > How to support my friend?

One of my very best friends just found out that she is going to lose her baby. She was 18 weeks pregnant at her anatomy scan when she found out that the baby would not survive outside the womb (she developed without kidneys). It also happens that I am 9 Months pregnant, about to have my baby in the next week or two. We were so excited to be pregnant together, even though it was for a short time. We were so happy that our babies would be 5 months apart. It's such a tragic, incomprehensible loss and I am devastated for her. All I want to do is help her, but I know that nothing I do can make things better. I can't imagine what she is going through. She is about to have the procedure just days before my due date.
She told one friend, who told the rest of us. She said she didn't want to talk to anyone yet, and that she was planning on going into hiding for a while. Another close friend and I texted thoughtful messages to her, letting her know of our support, but said there was no need to respond. She did respond saying thank you. We want to do something for her, that won't be invasive and that will respect her space, but will let her know we care, and are here whenever she's ready. I especially feel that I'm in a tricky position because I don't want to make her feel worse. I don't plan on including her in the texts that go out when I have the baby, because I feel like that would be hugely insensitive. I would of course understand if she doesn't want to see me or come see the baby for a long time. I don't know what to do, or what not to do. She is my dear friend and I don't want to make things worse, but I also want her to know I'm here for her.
July 31, 2017 | Unregistered CommenterYGE
Honestly - your friend has told you what she needs through your mutual friend - and it sounds like its space. I know you want to be there for her in a more active way, but it is best to take her lead in this situation and let her initiate contact when she's ready. It may take a long time - and she may never really want to be around your baby because it reminds of her of where her own would be. Or she may be ready to resume your friendship much earlier - people vary drastically. But you should let her decide that and just leave those lines of communication open. To do that, you could (once you can) send another email in about a month or two months (when the initial outpouring of support wears off) to let her know you're still thinking about her, and you are there whenever she's ready. I think not including her on texts and messages about the arrival of your baby is a good idea - you may want to arrange ahead of time for a mutual friend to tell her partner the news so he or she can tell your friend in private at home and she can have whatever feelings she has about it.

Finally - if you really want to do something tangible now, food can be helpful. People sent me a gift certificate to a food delivery service (one that prepares single serving healthy meals) that I could use after family left, on the days that neither of us are up to cooking. It didn't require us to interact or visit with anyone and we're still using it on tougher days.

Thinking of your friend and her baby today, and you too.
August 1, 2017 | Unregistered CommenterSR
Thank you so much for your advice. I was thinking that it's best to give her space and let her come to me since that is what she communicated to our mutual friend... it just doesn't feel natural to me, because we are so close, and all I want to do is run over there and give her a huge hug and try to comfort her. I just don't want to be absent. So, I needed the perspective of someone who has been through it, to confirm that it's the right thing to give her space.

One thing I forgot to mention that makes it even more tragic, is that her and her husband tried for a while to get pregnant--2 years. I feel like that makes it even harder. I've thought about not posting anything on social media about my baby either, for a while, but do you think that's overkill? I'm just imagining her scrolling through and seeing it and being heartbroken, and I want to be sensitive to her.

I really like your suggestions about sending another message after time has passed, and the meal delivery service is a great idea. My mother-in-law recently passed--last year,, and that's something that would have been really helpful--there were many times when I was tired and sad and didn't feel like cooking, but did because my husband wasn't in the condition to be taking care of himself.

Do you think it would be okay for me to send a sympathy card with the food delivery certificate, and then check in in a month or two? Should I let her know that I completely understand if it's difficult for her to see me, and that I will be there whenever she is ready no matter how long it takes (and that there's no pressure)?
August 1, 2017 | Unregistered CommenterYGE
YGE - your compassion and sensitivity to your friend is beautiful. SR offers some good advice, especially about the meals and following her lead of wanting space. I also think it is important to remember that you know your friend best. My own experience of losing a granddaughter 4 months ago, after a fatal diagnosis of heart defects and CDH at the 20 week ultrasound - but my DIL carried her until term where she died shortly after birth. Email and facebook messages were thoughtful, but the tangible was what I craved - a hug, a card in the mail I could re-read, flowers, someone sitting on my couch and crying with me. I am trying to let go of the hurt feelings from those in my circle of close friends and family who, not knowing what to say or do, said or did nothing. Your friend is going through tremendous physical, emotional, mental, spiritual and social trauma. Her dreams and hopes have been destroyed and she needs you and her other friends. Some days she may not answer her door, or your text messages, or your phone calls. But from my own experience I so appreciated the messages of love even when I didn't answer the door and someone simply left something on the doorstep, when I didn't answer the phone and they left a message of support, when I didn't have the energy to respond to a text. Because you know and love your friend pay attention to your own gut feeling. A beautiful heartfelt letter telling her of your love and your devastation at her baby's death will probably be so appreciated. The best thing about letters is she does not have to respond in the moment when she may not have the emotional energy to do so. But she needs to know that you acknowledge her baby lived and died, and that you also are grieving with her, and physical reminders will be so important - a sweet blanket with her baby's name embroidered on it, a tree or rose bush to plant in her honor, a grief workbook. But continue to be sensitive to her needs and her possible need to distance herself from your baby for a while and do not allow yourself to be hurt or offended. Hold her in your heart if you cannot hold her in your arms. Bless you for loving her.
August 1, 2017 | Unregistered CommenterC
I personally wouldn't include any reference to your pregnancy or your baby (i.e., I know it might be hard for you to see me right now) in a card, but I think a sympathy card that lets her know you're thinking of her and you're there whenever she's ready, no matter how long that takes, would be appropriate. I liked having cards that I could open when I was ready and react to in my own space. Also - as C says - you know your friend best.
August 1, 2017 | Unregistered CommenterSR
YGE, your thoughtfulness in reaching out for advice is such a wonderful thing to do for your friend. I think SR's advice is good. In my experience, the very best thing that people could do for me was exactly what I asked them to do, even if it felt wrong to them. It is really, really hard to support someone through grief. I think that one of the hardest but most incredible things that you can do is to be the friend that she needs, not the friend that you want to be. You might want to hug her and send her things, but if that's not what she wants, the most loving thing that you can do is to listen to what she says she needs right now. I asked that no one give me gifts and yet they still did. I threw them all out. I especially didn't want gifts from my pregnant friends. Sometimes we just react weirdly to such intense grief - realize that it is nothing personal against you. She might feel differently now or in three months time, or never. Maybe you can use your mutual friend as a go-between if that helps, to occasionally check in and see whether she would like you to make contact? Good luck - loving someone when they're hurting so deeply is hard work. She is lucky to have you (even if she can't see you for a long time).
August 1, 2017 | Unregistered CommenterK West
I'm so sorry to both of you, for your losses, SR & C. Thank you for taking the time to give me your advice and points-of-view. It's been really helpful.

That makes sense about having something tangible. When my husband lost his mother last year, I remember he was really touched by a heartfelt letter that a friend had written to him (she had lost her mother years back)—he so appreciated that, and so did I. We also received a gift certificate to buy a tree/plant to plant in her memory, and I thought that was such a great idea.

We (her closest girlfriends) have decided to send flowers as a group at least for the time being. My husband and I (he is close to her as well, and friends with her husband) plan on sending a card, we're thinking with a tree (maybe with some sort of symbolism) to plant and remember the baby by. But I also want to send a letter from me, maybe after a little time has passed, to check-in with her and let her know that I'm still thinking of her (I know I will be) reiterating that I'm still here whenever she needs me, but that there's no pressure—something to that effect.

I definitely won't let myself be hurt or offended if she has to distance herself from myself and the baby—I can't imagine how difficult it would be for her to see me anytime soon, or my new baby. Even if she were okay to see some people now, I would be really wary of being present physically, just because I imagine my 9 months pregnant belly would be a trigger for her and really difficult to see. I also think that I'm just going to lay off of posting anything baby related on social media for a while—I can still celebrate my baby and let other people know in other ways that she won't see.
August 1, 2017 | Unregistered CommenterYGE
One last note - maybe the mutual friend she talked to should check in to see if your friend would like flowers. I hated flowers - like really really hated them. Because they withered and died and only reminded me of the time passing since my baby died.
August 1, 2017 | Unregistered CommenterSR
K West, I'm so sorry for your loss. Thank you for your insight.

She didn't tell our mutual friend that she didn't want any contact from anyone, or gifts from anyone—she said she just didn't want to talk about it to anyone yet. I definitely understand your point about being the friend she needs, not the friend I want to be, and I definitely don't plan on trying to make contact/calling her or talking to her unless she initiates that, and I realize that could take a really long time.

We are best friends and have known each other for almost 20 years, so I don't feel right about not acknowledging what's going on, or doing nothing at all. When I texted her, I told her she did not need to respond to me, saying I understand that she doesn't want to talk, but she did respond. If I can't be present physically for her or talk to her, which I totally respect, I still want to let her know I'm here whenever she decides she needs me, without any pressure at all. If she does react in a strange way by throwing away what I send her, or choosing not to read it, then I would understand that—I wouldn't be offended because everyone deals with grief differently, this is such a tragic loss, and I can't judge how she needs to grieve. I would even understand if she's resentful towards me—I understand that can happen. However, I can't imagine she would be hurt by me sending a heartfelt note/card or letter and something to plant... When people were silent, when they said nothing, or did nothing when my mother-in-law passed, I found myself become resentful towards them—because any gesture, even just "I'm sorry", means a lot when you lose someone.

I think that's good advice about checking-in with the mutual friend from time-to-time, and I definitely will do that.
August 1, 2017 | Unregistered CommenterYGE
That's something I hadn't really thought of with the flowers dying... I'll see if she can check with her. Thank you.
August 1, 2017 | Unregistered CommenterYGE
Hi, my beautiful daughter, Eleanor, was lost at term in November last year. A colleague and friend was pregnant at the same time, we went to NCT classes and pregnancy exercise classes together throughout. Her son was born 7 days before my daughter.
A week after I lost Eleanor I invited her and her baby son to see me. She brought a lovely gift - a rose bush called Eleanor and wrote a card to say that she had bought another for her own garden as a memory of the friendship our children should have shared. Although this was so hard it was lovely and this week two beautiful flowers have appeared on my rose bush and two on hers. It creates a wonderful link for us even when I can't bear to see her or her son.
Please look after your friend and yourself.

Thinking of her, her baby, and you and yours

Xx
August 1, 2017 | Unregistered CommenterKE
Hi YGE,

It's lovely of you to want to do something, I understand the impulse completely. The sad news is that there will be plenty of opportunity to be there for her in the coming years. She will be a mother to this baby forever, will remember her firstborn forever.

I am going to generalize based on my own experience and the many stories I've read of other bereaved parents, but there is always a chance that your friend will respond differently, so always tread carefully.

In fact that is my first piece of "wisdom" - her needs might change from day to day, but she will probably not communicate this from day to day. She might not be able to talk about it now, but after some time (and it could be months) she might start needing to talk about it, after she's pushed everyone away. For me, by far the most helpful thing in the long run was when people would drop me a line, telling me they're thinking about me, asking how my days were passing. Some knew they should continue doing this every few days, then weeks, then months, and now they have a special place in my heart. They understand that this pain goes on, and I know that I can talk to them when a wave of grief comes along.

I didn't like it when people would try to find some silver lining. There is nothing good about losing a child, and the greatest need is to have someone sit with us in our pain, quietly, unobtrusively, without offering anything other than their presence and willingness to accept that this really sucks.

Your friend will probably go through the process of giving birth (and becoming a mother), and she will be encouraged to hold her baby, spend some time with her body, possibly several days. She might take pictures, a lock of hair, hand prints. She might bathe and dress her baby, read to her, cuddle her, she might change a diaper. Then she will have to part with her baby forever. These are monumental events, and it is difficult when people pretend as if they never happened. It will be all right to ask, some day, what the labor looked like, about the baby's size, whether she looked like someone in the family, what they named him or her - the things you would normally ask when a baby is born. Her funeral will also be an important event for the parents, the one thing they organize for their baby. You might ask how it went, what they did. You could ask to see pictures. You don't need to ask now, or even soon. These will remain important events in their life.

Some aspects of getting to know your baby are pure beauty, even these circumstances. There is so much love. But it is also severely traumatizing, and any reminder of babies for many months to come will be strongly retraumatizing for your friend. She might not be able to spend time with you for many months, possibly several years. From what I've seen, some friendships do survive this (always to the surprise of the bereaved mother, who normally can't deal with live babies), and it is always situations where the friend with the baby shows empathy and sorrow and shows her friend that she is thinking about her baby and is sad that their children won't grow up together. Some bereaved mothers are concerned about crying in the presence of another baby, about not being a good friend anymore. You can assure her that it is all right to spill tears over your baby, or to not ask questions about him/her.

Your friend might also need to go back to the hospital for follow-up tests, for example if she agrees to a post-mortem for her baby. Each of these visits will be very difficult, because she will be back in the place where she gave birth to and spent time with her dead baby. She might have many medical questions, many fears about the future. These will take months to get somewhat less bruising.

This time of year will be difficult for her in the future. Remember her baby's birth date - the date she gives birth, the anniversary of her baby's death. My son was four when his sister died, and I had to attend a number of children's parties with him that year. They were all so very difficult. Celebrations of life. Her baby's birth will be remembered and marked by few. Try to be one of those few.

The due date will also be an important, heavy, sad day for her.

Many people assume that the death of a baby is similar to other life challenges - you take some time off life, you heal, you get back to normal. Your friend might think this as well. What most of us found, however, is that the grieving is what heals us most, and there is no longer a separation between being privately in pain and publicly fine. This loss follows us around, and those who show us they know it, those become our true friends.

Bottom line, let your friend be for the moment if that is what she wants. You still have a lifetime of support to offer her.

I wish you all the luck with your delivery.
August 2, 2017 | Unregistered CommenterAna
My baby had the same diagnosis as your friend's baby (bilateral renal agenesis). Like your friend, we chose to end the pregnancy, by delivering him at 23 weeks. I agree with much of what is said above, and for me, support was much more appreciated than distance. Even though I didn't want to talk to anyone, the letters, texts, emails, phone calls (voicemails, since I didn't answer my phone for months), were so appreciated. The whole experience can be very isolating, and it still brings tears to my eyes when I remember the people who reached into my bubble of grief (especially if they had to come out of their bubbles of joy... for the ones who had babies around the same time).

Like someone mentioned above, tangible things she can hold on to are the best. Cards, candles, things that she can put in a drawer and pull back out later. There isn't much to remember our babies by, and when we want to visit them and the memories again, "stuff" is important for that.

Even if she needs space, I would continue to reach out with some regularity, even as the months go on. She will think about her baby every single day (it has been over a year, I have had another baby since, and I STILL think about him every day) so don't worry that you will be reminding her of anything. Even if she finds happiness (which she will again... it will take time), she will still have her baby not too far from her mind. I really appreciated the texts from people months afterwards that said "thinking of you today, no need to respond. xoxo". Those were very important on helping me re-integrate into the world of the happy and living.

If your friend is anything like me, her head is also spinning with the decision she is making, and the what-ifs. With bilateral renal agensis, there are a handful of survivors out there (I have done a LOT of research, and I know of two... maybe three) as a result of some experimental treatments. Not sure she is aware of this, but we looked into this as an option. Unfortunately, most babies who go through the treatments ultimately die after some number of months, after spending the entire time in a NICU with surgeries, and aggressive treatments. We ultimately decided that we didn't like the odds, and that wasn't the short life we wanted for our baby boy. But the decision is heart-wrenching, and I still frequently revisit it and still wonder whether we did the right thing. If she decides to talk about the decision at any time, regardless of how you feel, tell her she did the right thing. I needed to hear this over and over again (still do sometimes... which is why I still see a therapist).

There are also a few groups on facebook for families who have been affected by Potters/Bilateral Renal Agenesis. If she does a search on these terms, she should be able to find them.

And remember her baby on the due date, and on anniversaries... every year going forward. It stung that only one friend reached out to me on the anniversary of his birth/death this year. You can even just say "thinking of you today". I also like hearing people say his name.

Thinking of your friend.

xoxo
August 4, 2017 | Unregistered CommenterAbby