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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 > Trouble with joy

My daughter passed away a month ago, though we knew she would pass since she was born three months ago so my grieving process is more in the third month. In any case, we are at that unfortunate part where everyone else starts moving on with their lives, you don't get checked in on anymore, my husband's back to work, the holidays are over, and seemingly things should be "back to normal." She was born in mid October so we immediately had Halloween, then a short road trip for Thanksgiving to meet family, we decorated and prepared for Christmas shortly before she passed, then we attempted to use Christmas as a way to distract and partially heal (I have two older living daughters that we had to consider and we tried to keep the holiday as fun as we could for them). Now, there's nothing more on the horizon. It's just normal life. All of her baby stuff is put away, the holiday stuff is put away, our house looks exactly as it did back when I was pregnant and ignorant of what was about to happen to us.

In a way, it's healing to have things back to normal. I've been grief stricken and living in sort of an alternate universe since October. (Long story short, we had major water damage and had been sleeping in our guest room and sharing our kids' bathroom since July so now we're also back in our normal master bedroom and everything is now fixed) My inlaws lived with us 75% of the time to help care for my other children but now they're gone. Now is when I can (should?) begin to embrace what I have and find my new normal.

But whenever I find myself thinking about possible things that would be a good distraction or things that would normally help me feel better when I was going through a sad time, like planning a fun trip or joining a yoga class or finally learning how to play guitar, whatever, I feel huge pangs of guilt. Like I'm not supposed to be finding joy because my baby died. It's weird because these last few months, I have absolutely had weeks upon weeks of not wanting to do anything, strongly preferring to stay home and not interact with the world. Now, I don't feel that way. I feel motivation to find myself again, but it's like this outside voice in my head saying "you can't move on! you're leaving her behind! she just died and now you're prioritizing self improvement?" And when I think about it, I think it's partially because if I move on and do new things, it's really totally officially over, she's really not ever coming back, and if I stay in this quiet reclusive mourning period, at least she's still kind of with me. Things are too much like they were before she was here and it's almost like her whole existence was a dream that didn't really happen. We have some pictures up, and we have her urn on our mantel, and I wear my thumbprint pendant everyday, which all feel like good, natural ways to remember her, but now I'm stuck.

Is moving forward always this hard? Or does distracting/finding new hobbies/whatever feel good? Am I just jumping the gun? Before, when I was in the early throes of grief, staying home was all I could do and I felt completely comfortable with that. Now when I stay home, it doesn't feel like what I want to be doing, I feel irritated with myself.
January 5, 2017 | Unregistered Commenterwicket
Oh wicket, for me, yes it was hard. And nothing is really the same, even 2.5 years out. Your post made me think of one of my favorite songs about loss and grieving. It's a French pop song from the 80s titled Of course (Evidemment, Lyrics by Michel Berger and sung by France Gall). Here are the lyrics, translated (they make me cry every time but that's the way it is):

There’s like a bitter taste in us
Like a taste of dust in everything
And the anger that follows us everywhere

There are silences that say a lot
More than the words we admit
And all these questions that just don’t make sense

Of course, of course
We still dance to the tunes we love
Of course, of course
We still laugh at silly things like little children
But not like we used to

And these battles that we don’t give a damn about
They’re exhausting, disgusting
We keep this wound inside
Like a splash of mud
That changes nothing and everything

Of course of course
We still laugh at silly things like little children
But not like we used to
Not like we used to
January 5, 2017 | Unregistered CommenterAB

I understand how you feel in terms of moving on. I have been two months out and I, too, feel more and more ready to do "normal" things. What you said here resonated with me because I realized, reading what you wrote, that I feel the exact same way:

" And when I think about it, I think it's partially because if I move on and do new things, it's really totally officially over, she's really not ever coming back, and if I stay in this quiet reclusive mourning period, at least she's still kind of with me. Things are too much like they were before she was here and it's almost like her whole existence was a dream that didn't really happen."

People are moving on. I see it all around me, too. Family members talk about topics other than my dead son, and I keep feeling the urge to just talk about him and redirect them towards him. Work is moving along, my husband is back to work, life is moving forward. And I want to move forward, too, and in ways, I am. But at the same time, if I move on completely, like you said above, I will have to accept that my son is truly, permanently gone. It DOES feel like a dream. It feels like I was never pregnant these past nine months, even though there's obviously proof of it with my postpartum body, the ultrasound pictures, the memory box, my baby's grave. But it still doesn't feel REAL, and I think it will still take months upon months for our brains to fully acknowledge that yes, this happened, this isn't totally a dream, and we lost our children. I think we are both in the phase where the shock is leaving us and the grief sets in. And grief is like an ocean, it's not a straight line, you will move back and forth, and I am in that phase too, where I want to move forward, and I do feel guilty for it.

When I think about getting pleasure from things I used to enjoy doing, including old hobbies and finding new ones, I have to consciously avoid feeling guilty. I think you have to be selfish, and not feel bad for it. If you think about it, your daughter loves you. Your daughter would not want you to feel pain. You don't have to grieve JUST to remember her, or feel connected to her. You don't have to add unnecessary suffering onto yourself. You're going to keep grieving anyway, and you're going to have sad and depressed moments, moments where you break down and feel devastated in-between feeling happy or doing something that brings you joy. You shouldn't feel guilty for it at all. You should definitely stay open to positive activities. Because you know you will never forget your daughter. And your new normal can be allowing yourself to enjoy life, while never forgetting your daughter.

I agree that it is healing to have things back to normal, but at the same time, I am afraid people will forget my son. I actually asked my husband yesterday if he would forget our first baby boy, whenever we successfully have more children. He said he wouldn't, he would never forget him, and if people ask us in the future how many children we have, we will always include him. Having that assurance that my husband will never forget our son made me more comfortable to feel like I can move forward.

I don't know if this helps, but I guess from my personal experience so far, I want you to know that I also feel guilty at times, but I know that moving forward with life doesn't mean that I'm abandoning the memory of my son. I can move forward with life and grieve simultaneously, as long as I can balance those two things. And that is going to be the new normal, and I'm fine with that. I want to be emotionally "better" and healthy because I know my son, like your daughter, wouldn't want us to suffer more than we have had to.
January 5, 2017 | Unregistered CommenterNada
Coming up on 8 months and it feels like a lifetime away. I was resentful of life and everyone around me for moving on a couple of weeks after we lost him. I resented the it was meant to bes, the you will find meanings and most of all the this will make you a stronger and better person (no actually I was a MUCH better person before I won the lottery of shit).

The beginning was the hardest (going back to work, etc). It felt exactly like you said, everything was the same as if he never existed. He existed in my thoughts but with rage, bitterness, sadness, heartbreak and desperation. The best advice I got was to try to find a positive way to remember him. I keep a heart on my desk in his birthstone color to keep something of him close. I have a family "portrait" in my living room that has his name and a "bird" flying away. I do plan on planting a tree. Tattooing his footprints into my wrist. I managed to move forward but I too am afraid of leaving him behind. I am finding ways to take him with me wherever I go and still be there for the rest of my family.

I also has a picture photoshopped. As odd as it seems, having something nice to look at makes me smile and overflow with love rather than grief. I can in that moment smile at my son rather than wail and curse everything that happened to us. Much love
January 5, 2017 | Unregistered CommenterJ&A's Mom

I remember punishing myself for many months preparing for the death of her. When she died, one of the emotions I felt was...relief. The bad thing that was going to happen, happened. I survived this trauma and tragedy, and I could maybe go back to how things were in a sense? I remember feeling like I should be feeling worse around the same time you're at. But, other kids will not allow you to stay in the dark. Of course, nothing was the same. But I craved feeling normal again. To have sex. To watch The Bachelor. To bake cookies. In so many ways life was just beginning- all this processing & letting go & figuring out her role in our family & yet in some ways, it was an end. I read about the concept of anticipatory grief- & it helped me realize I wasn't unfeeling, or heartless, or over it. I had been waiting. I had been preparing. And because I expected it, the trauma & shock was more about the diagnosis & less about death. There's a long road ahead. I kept self-evaluating as I went and still do. Two things stuck with me. One, don't do anything that doesn't feel right- pull back. You'll know when you're ready. Two, let yourself feel whatever you feel without apology. When you feel happy, or laugh, embrace it. It'll pass. When you feel awful, guilty and grief-stricken, embrace it. It'll pass.
January 5, 2017 | Unregistered CommenterElaina
Oh, dear wicket,

I hear you and I totally get it. It's hard to be joyful ever when your child has died. Then when you do feel little hints of your old self wishing to return, or a new interest or idea that brings any amount of joy whatsoever, it can feel like, "No! I can't allow this! My child is dead, and I'm thinking about ___?!" The guilt. Oh, the guilt. I also have the opposite happen, when I feel like I SHOULD enjoy something but can't, b/c it's something I wouldn't have done if she were here like she should be. A cool trip for a holiday? It was actually fun, but I never would have gone if she were here. A neat business opportunity that most would love? I can only slightly appreciate it, b/c I would not be part of this project in the first place if I were half-time like I intended to be with my live child.

I also understand the feeling that the deep mourning makes you feel more connected to your child. And how the thought of moving forward in any way is liberating but also feels like it's a step away from your darling baby.

I struggle with everything you mention, so I'm not here to be like, "Oh, I have great ideas for this..." I need advice myself! But one thing I try to tell myself (though I often don't listen) is that losing my daughter was punishment enough. I am BEYOND paying the price in grief and loss and shattered dreams. I don't ALSO have to pay with my entire future, and my current time in life, which I imagined being a far more joyful season, of course.

It does feel weird when life settles back into a "normal" routine. As though nothing ever happened. Like you mentioned, in a way it feels nice. My house felt like a funeral home for months, with piles of sympathy cards, floral arrangements, odds and ends that ppl mailed us, stuff from the hospital I still hadn't put away, etc. It was SO depressing. It was like my house was even screaming, "You will never escape this, even - and maybe especially - in the comfort of your own home! Muhahaha!" I felt a tinge of relief when I trashed all those cards, when all the flowers were gone, when we got rid of other random stuff we'd been given, when I no longer had lists sitting around with reminders of ppl I needed/wanted to thank for their support. It was like in some way, I was moving past that immediate aftermath, the rawest, scariest portion of the grief. But then the house is just... quiet, normal, back to how it was before, bizarre... and, yes, then the whole "Was I actually pregnant for 9 months?"/dreamlike thing happens, too.

Moving forward is BRUTAL. I don't believe in there being any real shortcuts or easy ways around it. I'm seven months into the grief (and that in and of itself is hard for me to believe). As far as hobbies and whatnot, if you're feeling those urges to get out of the house, I'd encourage you to seize the day and take advantage of that! I'd say, go for it. You already know how hard it is to feel that way at all, so I hope you'll allow yourself to do something you enjoy if you can think of something. For me, I've enjoyed going to movies lately. I didn't always do that a ton, and it's certainly not an indulgence I'd be able to take advantage of with the infant I should have. But I like getting my popcorn and soda and watching something for a couple of hours. I've also somewhat enjoyed some small home projects, even simple things - getting new patio furniture, new doormats, rearranging a couple of rooms, etc. As my counselor once said, "The brain likes novelty." I was a little relieved to find that my brain even could indeed appreciate novelty at all anymore. At first I was 100% about familiarity, and I felt stranger danger everywhere I went.

One of the things that can keep me stuck in my grief is that feeling that other ppl are/already have moved on. It seems like if they are going to be that way, then I am the sole bearer of the responsibility of making sure my daughter is not forgotten. Since my husband almost never mentions her either, I feels like if I stopped bringing her up or reminding ppl of my continued grief, her entire existence would more quickly disappear from anyone's minds. In a way, who cares what everyone else thinks? I know I won't ever forget anything about her, for one second of any day, ever. But realistically, I do also wish the whole world would acknowledge her, too.

I hope you'll pamper yourself a little bit. I've actually been a little more indulgent than usual lately. I'm working more than I had planned to, had she lived, and I have no expenses related to my child. I wish more than anything I could pay for anything for her, but since I cannot... I've been spending my personal money on ANYTHING I can think of that brings me any joy at all. Massages, subscription boxes of treats, new clothes, good seats at a concert or show, an expensive drink at a restaurant, etc. I'm fortunate that money is not an object, and I realize this advice might not be meaningful to everyone. But if you can pamper yourself, or you find yourself NOT having the expenses you planned to have at this stage in life, maybe you can treat your tender heart to something nice. (You might feel guilty for that, too! I know I do sometimes, like "This money was meant for my daughter, and here I am getting a massage." But we all know we'd give that up, and anything, to have our babies back if that were a choice.)

Bottom line - do whatever you need to do to survive. I don't judge anything, ever, that a loss mom says she does to get through the day. We're all navigating a path we never wanted. Hugs to you, wicket.
January 6, 2017 | Unregistered CommenterNM
AB - that song is beautiful, and it really does hit close to home. It'll never be the same, and that's something I'll need to work on finding peace.

Nada - You're totally right, It's so hard to not add guilt on top of the host of negative emotions we're already feeling, isn't it? But of course she wouldn't want me to spend my life mourning her. In a way, that would almost be like she "ruined" my life, and that's not at all true or fair to her. I'm so glad to have known her. Thank you for letting me know you feel the same way. It absolutely helps to have others who are in the same boat.

J&A's Mom - That's so great that you have photoshopped some pictures to include your precious son. I hope that helps him feel like a more tangible part of your family, because he is. I've also thought about getting a tattoo. It's good to hear that you're a little farther down the road and have made some good progress.

Elaina - YES. Anticipating her death was agony, and if I'm honest, I was in so much more pain and cried so much more when she was here with me, knowing that she'd be leaving soon, and as perfect as she looked, she'd never get to grow and live with our family. It was torture, so close and yet so far. I completely agree that my sadness is centered around the diagnosis and the what could have been. It's great advice to just embrace what you're feeling no matter what it is, because you're right, the emotions are never the same day to day.

NM - Thank you. Thank you. Your words were like reading my mind. Especially about doing things that I couldn't have done if I had a newborn nursing and keeping me up all night, like I should. That almost makes me feel like I'm glad that she's not here because now I can go on that trip, woohoo! That's a really good idea, to remind yourself that we've already suffered enough, and it shouldn't destroy our lives. Why is it that having a destroyed life somehow feel like we're honoring the death? I also felt so much relief to throw away the flowers and cards and knick knacks because I also felt claustrophobic from all of the reminders - "good morning, remember that you have these flowers because you lost your child so make sure you're grieving accordingly." I appreciate all of your advice and being able to relate so closely.
January 6, 2017 | Unregistered Commenterwicket
Hi Wicket
I understand what you're feeling - I read about it not long before my baby died and I decided very early on that I didn't want to stop doing the things that made me happy, in fact I did more of those things. In the first week after I lost her I played billiards, I went back into the music studio, wrote a few more songs, I socialized with my closest friends and I had a lot of sex. I didn't want that awkwardness of stopping those things and then having to rediscover them whilst feeling guilt about wanting to rediscover them (I hope that makes sense) but I also knew that I'm not honoring my brave little fighter by giving up and not fighting for myself. Our babies are not with us but our lives are still worth living.
Her funeral was on the 23rd of December but by Xmas only my mother and my daughter were talking about her - huge family dinner and nobody said a word - that was the strangest thing, when others move on and you're left with only the memory. My husband returned overseas to work 10 days after the funeral as well, so it's me and the 3 kids now - I'm really bored!

What I found to be the best ways to distract myself while truly honoring her memory was making a video of her life which we played at her funeral, from the birth right through to her last day, on life support following surgery. It was hard but so so worth it. On Boxing Day I began writing a book about her life, the things I experienced right from very early in pregnancy. It might take forever to write but I feel productive and I'm honoring her by doing it. Could that be something you could try? If you commit part of the day to that you might feel less guilty about doing the other things you love.
My 8 year old daughter has started a routine with a ballerina bunny soft toy - my friends little daughters gave her one at the funeral to put inside the casket with her sister, then a week later they gave a matching one to my daughter. Now every night I have to kiss/hug the bunny after kissing my 8 year old. "A kiss and a hug for my sister?" She says. This little routine keeps her alive to us and makes us both smile. My 9 year old son decided his lucky game of golf was because of his sister helping him from heaven, so I also had to kiss his lucky golf ball - hoping he forgets that one! Yuck!
Maybe find a little routine like that which suits you. life might be moving forward and people are starting to forget, but you can remember her in your own ways - while still letting yourself be happy. You've been through so much that you deserve happiness.
January 9, 2017 | Unregistered CommenterTania