• Aaron's Playground

What I want you to know about infant loss

By Becky Markovitz

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 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 have felt like my former self. Instead, I choose 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 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 bed sheets, 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 the 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 your child 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.

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