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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 > What I Want Others To Know About Infant Loss

Dear Loss Mamas and Dads,
I haven't been very vocal on here, but I've been reading your posts since I lost my son in October. For a while I couldn't find the words to express the depth of my loss or the depth of my sympathy for the loss of all of your beautiful babies. I just recently started writing about it...and I haven't stopped since. There is simply so much to say. I feel so misunderstood by anyone who hasn't lost the most meaningful person in their life. And so I wrote a Facebook post to all of those people, all of those who just DON'T GET IT. Today I'm sharing that post with all of you here, all of you who unfortunately understand every nuanced point, and feel everything I feel. I invite you to share this post with anyone in your life who could use a reminder of exactly how infant loss hurts and continues to hurt. It is so important to tell others what we are going through and specifically how they can help.

Love,
Aaron's Mom
http://www.aaronsplayground.org


What I want others to know about infant loss:

1. Aaron, my first-born child, is dead. I can state that pragmatically, but there will always be emotion behind it. In an instant, dreams were shattered. Hope was shattered. Security was shattered. A promising future was shattered. I, as his mother, was shattered. And that's the easy side of my grief to grapple with.

The hard part? I miss my son. I yearn for him. I miss holding him and feeling his little hand wrap around my finger. I miss the way his eyes communicated his kindness and sense of humor. I miss how he would grow and change ever so slightly every day. I miss how physically strong he was – at just over 4 pounds, he could lift himself off of my chest and turn his head in the direction of a noise. I miss how emotionally strong he was, too. He never complained or cried about being poked with so many needles that the skin of his heel started to look polka dotted. He took everything in stride (unless he had a wet diaper, in which case he would turn red and fussy until it was remedied). I miss how comfortable he felt in my arms. I miss how he looked a little bit like me and a whole lot like my husband. I miss his hair and his feet and his little button nose. I miss him, and I miss having him with me. Every day spent without him is painful.

2. Love for your child never stops. It is not like a breakup. It is not like it happened in the best interest of one or both parties and you just need time to unravel and get to a place of forgiveness. Love for your child is eternal. Nothing will cease or reduce that love's flow, and I wouldn’t want it to. Also, so long as there is love, there will be grief knowing that the object of my affection is gone. I don’t care if it has been weeks, months, years, or decades – do not ever act like a mourning parent should be "over it" by now. I will never be over this. Period. Even if I look "fine," I am not fine. I will always grieve this loss because I will always love my child.

3. Nothing will ever fix this. My life has been inextricably altered by meeting my son, falling instantly in love with him, watching him grow, learning his personality, feeling his warmth and his presence, and then witnessing his peaceful but untimely death. There is nothing that anyone can say or do to remedy the fact that my son is dead. Nothing will ever make it okay that he is no longer with me. Nothing will ever make this life without him more bearable or acceptable. And absolutely nothing will bring him back. It is the hardest truth to wrap my mind around; he is gone, and there is no changing that.

And something else that is so important, it needs to be stated unequivocally: having another child will never replace the one I had. Full stop. If you cannot replace a parent or grandparent or sibling, do not, for a second, fool yourself into thinking that this pain can be erased by introducing another child to our family. Aaron was an individual with likes and dislikes and personality. We, unfortunately, only got to see a glimpse of who he was, but we knew him and loved him not only because he was our flesh and blood but because of the beautiful and amazing person he was. Do not minimize his personhood because he was “only” an infant when he died. On the same token, it doesn’t matter how long a parent knew their baby, whether they lost them due to miscarriage or stillbirth or prematurity or birth complications or congenital disease or SIDS, that baby was still their child, and a child is irreplaceable.

4. Even if I am laughing, I am still grieving. Admittedly, the moments of joy have been scarcer since Aaron’s death, but they do still exist. My life, just like yours, is multi-dimensional. I do cry, frequently and fervently, but I also laugh, smile, make jokes, play, and love just like I used to before I intimately knew deep loss. Humans are very complex, and we are able to hold multiple emotional states simultaneously; we can be jovial AND be grieving – the two are not mutually exclusive.

However, I find myself censoring my happiness from social media because I’m afraid people will interpret it as “moving on.” I’m afraid people will attribute my smile to “healing” and not what it really is – a moment of reprieve, a moment of grace, a fleeting moment when I felt like my former self. Instead, I chose to share my sadness because, importantly, it deserves a voice. Societally, we offer such limited time and space to talk about loss, yet loss is universal and paramount to the human experience. So – to start the discussion, to normalize what is in fact commonplace, to inform the fortunate outsiders of loss, to model healthy dialogues about emotions and internal struggles – I use social media as a platform to tell my son’s story and share my pain. To anyone concerned, I assure you, my life is more than just pain – just as my laughter is more than unbridled happiness.

5. I want to talk about my son, but I’m afraid I’ll bore you or make you uncomfortable. I only had 49 days with Aaron, so I don’t have many stories to offer, but to me they are the most meaningful memories I have. He was everything. He was this new life with a name and a birthday and a freaking social security number who shared half of my DNA. He was my life, and I deserve every right to talk about him, even if I can only rehash details of the short time we spent together. I would love nothing more than for you to acknowledge Aaron – to ask about him, to say his name, and to remind me that he was real and I didn't dream this up. Nothing would make me prouder that to be told that his life had an impact on you. I promise, talking about my son will not make it hurt any more than it does. It might stimulate some tears, but only because they were already brewing just below the surface.

6. I want to celebrate my son like any proud parent, even if it is a bit unconventional. I want to show you the pictures of him that we treasure. I want to show you the toys he received from friends in different corners of the world. When you come to town for a visit, I want to take you to see his grave. And, on his birthday, I want you to send your well wishes or condolences to show that you remember (but please don't send a card with how old he would be as that painful reminder might just ruin me). And, yes, reach out on his death day too, because no matter how many years have passed, it is going to be a hard day and I'm going to want support.

7. I'm terrified of forgetting. Along with losing my son, I fear the secondary loss of my memories with him. His life was so short – too short – that I don't have many days or impactful memories to draw from. Everything becomes important – every time I held him, who his nurses were, what his hair smelled like, whether he had my ears or my husbands, the time he peed all over me, the first time I changed his diaper, the first time he opened his eyes, the warm feeling of his skin against mine. I want to document it all, but I've already forgotten so much. What memories will I be able to recall in 5 years or 20? It is terrifying to imagine that I might someday forget.

8. I feel tremendous guilt for my son’s death. Could I have done anything to prevent it? No, there was absolutely nothing I could have done differently. Should I feel guilty? My logical brain tells me no, don’t be stupid, but guilt still takes hold of me. Understand that as his mother, I felt it was my primal and primary responsibility to protect him, and I failed. I felt like it was my body's job to bring him to term, and it failed. I felt like my love was supposed to be strong enough to save him, and that failed. I failed because my son didn't survive. If only I was healthier... if only I would have prayed harder... if only I would have known from the beginning that I had a high-risk pregnancy... if only I had held him tighter...if only I had held him for longer... if only... if only... if only... and the guilt carries on.

9. I am envious. I love my friends and the fact that they are bringing new life to this world, but it is so hard to see the photos of their new babies or their effortless whole families. These are cutting reminders of what I no longer have, and as much as I want to be happy for them, it hurts knowing that I am not experiencing the same naïve and innocent joy. While I understand that parenthood is extremely challenging and I empathize with (and would hate to minimize) their struggles, I absolutely despise their complaints about spilled spaghetti or wet bedsheets, as if those are the worst possible things that could happen to a family. I detest complaints that they aren't sleeping because their baby is keeping them up at night – you have no idea what I would trade to be sleepless with an inconsolable baby. I hate seeing new pregnancy announcements that remind me so blatantly of what I once had. Even more, I hate how everyone who sees that pregnancy announcement automatically assumes it will result in a healthy, living baby. I hate most of all that I now feel the need to use the word "living" in that last sentence. I loathe if any complete family takes one lousy second of their child's life for granted.

If you are a parent, I want you to imagine life in my shoes. Think about the first time you felt your child. Recall how proud and amazed you were holding them in your arms. Remember the warmth of instantaneous love washing over you. Then think about the last time your child was really sick. Recall the worry you felt. Remember how incapacitating it felt to be powerless against whatever was causing their pain. Then think about your utter relief when they got better. Think about all of the precious moments you've spent with them since. Think about how their laugh brightens your mood after the crappiest day. Think about your fascination as you watch them grow ever more aware, ever more intelligent each day. And then imagine that it has all vanished. Irrevocably. Forever. Imagine how it would feel to bury your own child and have time keep pressing on without them. Imagine that your worst nightmare is now your reality. Feel the burning hole in your heart that aches for your child to be with you... and be endlessly thankful that they are.
February 25, 2019 | Unregistered CommenterAaron's Mom
I am so sorry for your loss. If only things have been different for all of us here. My baby girls were born at 24+4wks on the 33rd of November 2018. Emmanouela my first born stayed with us for 25 days and Michaela for 39.
Your post has so many truths in it that unfortunately only so very few understand. Where do I start? The guilt that you failed your babies? The fear of the future? The emptyness of your arms? The fear that if you seem happy people will think that you are moving on? All so very true...
I hope this post will help all those around you understand YOU.
You are one strong mama xxx
February 26, 2019 | Unregistered CommenterMary
Aaron’s Mom- I am so sorry for your loss. I cannot imagine how horrendous and challenging it must be.I have a friend who is going through something similar and posts like yours are so helpful so i can better understand how to be there for my friend. Thank you for sharing; I appreciate it immensely, and I am sure there are many others who are gaining from your thoughtful and clear explanations.
February 26, 2019 | Unregistered CommenterAnnie B
Mary, thank you for understanding. I'm so sorry we are going through this.

Annie, thank you so much for taking the time to try to understand your friend's pain. If more people could be like you and just take a moment to try to understand, well, the world would be a more compassionate and better place. You are a good friend.
February 27, 2019 | Unregistered CommenterAaron's Mom
Wow, I am sobbing my eyes out. Nearly 8 months have passed after my son died right after birth (a nice full term birth that started out as the happiest day of my life), it is still shocking. What you shared was so well written. I wish it could become required reading for all humans in general. Soon after my son died a doula (yes a doula) who also had a new baby complained to me about how I no idea how hard it was to deal with two kids in stead of one. I was too weak to tell her to go F herself, that I had no idea how was to have any live baby at all, so I clearly could not imagine her bullshit version of suffering. I want to smack people who complain about their kids, or people who say I am lucky it happened so soon, that it;s harder once you get used to having a live baby. I don;t know what is harder or easier, there is no easy in this, and honestly I am sometimes even a little jealous of people who lived the horror of sick babies, simply because I would have loved to have my finger held. I fell very sick and have no memories at all of holding him, just photos of him already gone that I love to show to anyone who can stand it. In Spain (where I live) babies myst live for 3 days in order to count as babies, my son didn´t qualify to be registered as a person- just a male fetal death. It;s an extra insult.

Anyway, I just wanted to say I am so sorry for you loss and really, really grateful that you wrote this. Thank you
February 28, 2019 | Unregistered CommenterGiacomo´s mom
I totally agree, Giacomo's mom. There is no easy in this. How tragic that your son is not even considered a person where you live. I'm so sorry. That is hurtful, and yes, incredibly insulting. Giacomo deserves dignity just like any surviving child because he is still a child, even if he didn't survive for long. I'm sorry you know this pain. My heart goes out to you.
March 1, 2019 | Unregistered CommenterAaron's Mom
Aaron’s Mom, thank you for writing and sharing this. I'm 7 years from my stillbirth, but reading this just brought the tears that are 'just below the surface, always'. It's so heartfelt... Hope writing it has helped relieve you, and hope you've received positive feedback from your FB friends who took the time to read it. Finally, I just want to say I really wish Aaron could be in your arms. I'm sorry for your loss, and wish you peace and strength.
March 12, 2019 | Unregistered CommenterEYR
Thank you, EYR. It has helped to "lay out all out there" to family and friends so that they know what I'm feeling and don't have to assume anything. I did get a lot of heartfelt responses which were very meaningful to me. Part of why this hurts so much is that it feels so isolating. I felt incredibly connected to my son, and now that connection is gone. Through writing this, I have been able to connect with a few people in new ways, which is nothing like a mother-child connection, but it helps to fill in the gap. I'm just hurting, and I needed someone to acknowledge my bleeding heart.
March 12, 2019 | Unregistered CommenterAaron's Mom
Aaron's mom- I am so sorry for your loss and suffering. Sending you love and light.
I also lost my son in October. Your post is so spot on to so many of my feelings-- thinking of sending it to some close family and friends who just don't seem to get it.
March 14, 2019 | Unregistered CommenterP's Mum
P's Mum,
Please feel free to forward it on to anyone who doesn't get it. That's exactly why I shared. To maintain anonymity, you can just send them to my blog post directly: https://www.aaronsplayground.org/post/infant-loss

All the best to you on this awful journey,
Aaron's Mom
March 14, 2019 | Unregistered CommenterAaron's Mom
Hi again- I shared with family and close friends and it’s been a really helpful conversation starter/ everyone reads it and takes away a different peice. A single friend related to the part about not equating it to a breakup, another on fearfulness around forgetting (as he is worried that that is happening with his mother who recently passed), and my sister in law related to honoring and celebrating my son. She asked if she could put a photo up of him which I said couldn’t make be happier. So thank you for your honest words, they have helped give voice to me and my sweet boy.

Much love to you and Aaron.
March 19, 2019 | Unregistered CommenterP’s Mum
Dear P's mum,
I'm so glad to hear that the post helped bridge a connection with your friends and family. The fact that your sister now wants to honor your son is so touching - it made me cry. I hope this can be the start of a longer conversation where you can ask for what you need and really feel supported in your grief.

Much love,
Aaron's Mom
March 19, 2019 | Unregistered CommenterAaron's Mom
OMG, it's amazing that your sister is putting up a picture of your son.
My mum has my daughter's name Maria-Rose tattooed on her ankle.
Its beautiful when others show their own personal love for our little lost babies. The sorrow becomes a little more shared out, and less heavy to carry around.
Love to you all
March 20, 2019 | Unregistered CommenterMachaela
This post felt as if I had written it. I teared up reading it, particularly the part about giving anything to have a baby keep you up at night. Oh god I would give anything to have him back, and unfortunately, regardless of how logical I am and even minded I can be- it still stings to hear parents brash complaints about their healthy, live children. I know parenting is hard, I was a parent for 4 months- but I loved every moment of it and the trying moments were ones I learned from, every time. We lost our baby boy to SIDS, it was like he was ripped away from us, one night you put them to bed smiling, the next morning- gone
You are all so right- so few people truly understand. It's sadly one of those things you can only truly understand if you have been through it, or if you have a very high level of emotional intelligence and empathy.

Facebook is a "happy place". A "perfect place". A self absorbed place where everyone's lives look shiny and slick. There is so little room for being real, being raw, being vulnerable. I'll be honest I quit Facebook after losing Josh and I have been happier for it. I've felt peace. I've strengthened connections with the people who I love and who matter, and who love us and loved Josh. I've felt like I can be 100% true to my life experience and what it has made me.

You are right- our lives are multi-dimensional and we laugh, we play, we experience, we cry, we howl, we feel depth of pain. All of it.

I do feel people could do better than to fall silent when someone they know has a loss like this, but ultimately it really shows you who cares. The people who have stepped up and been unafraid to feel for us and with us are drawn closer, and those who prefer to pretend nothing happened, have no empathy or even say callous things without bothering to think- simply fall away. Perhaps that's harsh, but that's life and my life has been opened up from knowing and loving Josh as the very real person he was, but also from losing him.

The desire to help others, is stronger than ever within me now. The desire to overcome adversity is engraved in my heart. The connections we can make with eachother as grieving parents are priceless, and ones that constantly touch my heart.

Our love for our children are lights that will never go out. Never ever ever.
May 15, 2019 | Unregistered CommenterJoshua's Mum
Dear Joshua's Mum,
I'm so sorry for the devastating loss of your son. Yes, no one truly can understand that pain but the few who belong to this awful, unlucky club. I am glad that the post resonated with you, and I hope it helped you feel less alone. It is a shame that others "fall silent" when confronting our loss; I know, for me, it makes the pain seem even deeper, and only strengthens my desire to be a voice for my baby who died. At the same time, part of me is jealous of those people for being able to compartmentalize their emotions and being lucky enough to have the option to turn away from the pain. Sometimes I wish I was numb to it all so I could actually go on living my life that was utterly decimated by this loss. I miss my son. I miss my old life. I miss happiness. I miss naivety. I miss bliss. I miss hope. I miss waking up and looking forward to my day, unburdened by the heaviness of having lost my only child. It is all so hard. Yet, I'm still glad we have each other.

With love,
Aaron's Mom
June 4, 2019 | Unregistered CommenterAaron's Mom