A few initial lessons learned on a personal journey of infant loss, and the grief encompassing it
It has been over ten months now since our beloved son, Luke, was born still at 34 weeks and 2 days. It has been the worst ten months of my life. Some days are worse than others – some are better. But there is no “getting over it” or “moving on” – which I think people sometimes expect after awhile. I think the people who think this either have lived a charmed life, so they can’t understand what it means to be where we are, or (more positively) just hope for us to be happy again. What they don’t know is…we sometimes are happy. I laugh and smile and enjoy life still. But…the grief will always be there as well, like a shadow. It is part of me now, and I wouldn’t shed it completely even if I could. Which I can’t.
Before losing Luke, I had no idea what it truly meant to be in the depths of grief. Like you can’t breathe or the world is crashing down around you grief. Oh sure – I’d been sad, distraught, and have grieved. But not like this. This was a sharp demarcation line in my life. There is before…and now there is after. “The world turned upside down” as Lin-Manuel Miranda would write in Hamilton.
I’ve learned a fair bit about grief in the ensuing months. I have much more to learn. I have a lifetime of lessons ahead of me. This is what I’ve personally learned…but grief is an individual journey and your mileage may vary. I find universal platitudes or things like “the stages of grief” to be beyond useless. And this is particularly about the grief of losing a child…before they even had a chance to live. Grief changes based on what you are grieving, I’m sure.
Some of what I’ve learned on my personal grief journey…so far:
- Grief is hard. I never knew how hard. Those first few weeks…it was a struggle to eat, sleep, bathe. You just go through the motions to get through each minute/hour/day. And…while it’s not like that anymore…it can sneak up on you. Catch you unawares and still floor you.
- Grief doesn’t ‘get better’ – it gets different. Easier seems the wrong word also. Maybe: less sharp and distinct. But it is always there. And always will be. Perhaps particularly because of the grief of infant loss, when a child dies and all the dreams you have for that child, your life with them, their life…all of that dies at the same time. Yet those dreams linger and become apparent at odd times. “Time heals all wounds” is a trite and useless adage. It needs to go extinct.
- The support of friends and family means the world. And not just right after…though that is incredibly important. We received so much love and support: friends made food, neighbors got us groceries, people sent Doordash/Grubhub/restaurant coupons, as well as a veritable garden of flowers and plants, a mountain of cards, meaningful and thoughtful gifts, custom-crafted items. Offers to just talk/listen, at a time we were at our most raw and vulnerable. Really overwhelming stuff. And it meant so much to us. I am forever grateful to everyone who loves us enough to reach out in our time of most desperate need.
- To that end – grievers do not know what they need in the time after experiencing devastating loss. I myself, before this, definitely didn’t know how to support a griever at all and look back in shame. I certainly would be the person who expresses sympathy and tells them “let me know how I can help” or something like that. But the griever has no mental capacity to tell you what they need. You just need to think: what can I do for them? And then just do it. Send a gift, cook a meal, send food coupons. When in doubt…go with food. It’s too much work to figure out on your own.
- There are no magic words to say to a griever, so don’t look for them. And it is always better to say something than nothing at all. I know some people are likely worried about upsetting someone who is grieving by bringing up hard/sad things. But, for me, you bringing up Luke isn’t going to make me sad. It’s not like I’m not thinking about him already. You bringing him up will do the opposite – it will remind me that he is acknowledged, thought of, remembered. And this is a great gift.
If you don’t know what to say…say that. “I’m so sorry…I just don’t know what to say” works fine. Better than saying nothing. Or say something like “tell me about your child” or “I’m here to listen” or “I was just thinking of them.” All of that works! At least, for me.
- There are, however, wrong things to say to a griever. Here are a few of my personal disfavorites: “God has a plan” or “it wasn’t the right time” or “your son was too beautiful so now he is with God” or some such terrible thing. Notice a theme? Yeah…religious explanations to a griever, particularly one who you don’t know their standing on faith…stay away from them. I find these sorts of statements are more for the person making them than for the griever. It helps the person explain to themselves something they find unexplainable. Not all wrong statements are faith-themed, of course. These just stick in my mind.
- Thoughts of my son dominate my mind and heart. This goes along with the above on being worried that saying something to a griever might remind them of their sadness. It’s a natural, but silly thing to think. One cannot be reminded of something that is always on your mind. In fact, I dread the times when I’m not thinking about Luke as much as I feel like I should. It’s like…I’m betraying him and his memory. I cling to these thoughts of my son and welcome them when they come, even though they can be difficult. Grief is contradictory.
- Seeing other people’s happiness with their children is more difficult than I thought possible. This is a tough one, and leads to much guilt. Friends and family who are so blessed to have happy, healthy children…I was caught unawares by the jealousy and sadness this brought out in me. Don’t get me wrong – I couldn’t be happier for others. But, man…it is hard to see the pics, the smiles, the memories being made. I have never hidden so many Facebook posts in my life. It is nothing personal; it is self preservation. I hope I can find more joy in others’ happiness as time goes on, but know the sadness will always be there. Especially for children who would be the same age as Luke would be. “Luke would be going to school” – “Luke would be graduating” – “Luke would be [insert anything]” thoughts will dominate.
- Communication with your spouse is everything. My wife is amazing. Sometimes, from what we’ve learned, grief can drive couples apart, for many reasons. We’ve grown closer. Some days, I am the strong one and pick her up. Others, she lifts me. Sometimes we are both down in the depths together. But that’s just it: we are facing everything, together.
- Pets are amazing for grief support. Eevee is the best. That is all.
- Seeking out others with similar stories can save you. We joined an infant loss support group shortly after losing Luke and it was one of the best decisions we’ve made. Sharing your own story is freeing – learning to talk about your child in a safe place with others who know what you’ve gone through is good practice for those moments when you may be caught unawares. The “do you have kids?” question dropped in a casual conversation, for example. I feel more prepared on how to answer, equipped with tools I likely wouldn’t have otherwise.
We’re so thankful to have joined our group. Hearing other loss stories is difficult, but also helpful in a way. It can leave me raw and exposed, but that is cathartic as well. It’s freeing, to have planned times to let the grief, thoughts, and memories flow, without worrying about others’ feelings, societal pressures, keeping up a brave face…whatever. Our group shows us that we are not alone. Others are living this path too – and still feel love for their child 25+ years after. Which ties into the above that grief doesn’t go away; because love doesn’t go away.
- I’ve learned that I am the guardian of my grief. Someone said this in our support group and it resonates fully with me. Since often people don’t know what to say, or don’t want to bring things up, nothing will be said. If I want my son to be discussed, I am likely to need to be the one to initiate that conversation. And I must choose when, how, and with who to do so. And that is okay. My son’s story is mine, and Kelly’s, to share and our grief surrounding his death is as well. I choose to share widely, so people may understand our story, and Luke’s story. I want him to be remembered and loved. To love me, is to love Luke…because he is a huge part of me, of my heart. And I share also because of this final lesson for today:
- Infant loss, and the grief that surrounds it, is a taboo subject. But it shouldn’t be. This is something that has been somewhat surprising to me. We have normalized discussions of grief about ‘natural order’ types of grief…say, the elderly…grandparents or older parents. Since these sorts of things are “supposed” to happen and more people have experienced them firsthand, discussions are easier. Infant loss makes everyone uncomfortable. Perhaps it shines a lot on something that parents don’t want to face – that their child can die at any time, for no reason at all, no matter what they do. I can see why ignorance is bliss. People may get uncomfortable talking about it.
But miscarriages, termination for medical reasons, stillbirths, infertility, SIDS, and more…all of these are more common than you may think. And should be talked about and normalized. It is bad enough to face these things at all, but facing them alone is all the worse. Death is part of life. We as a society should be better at facing it. I will continue to shine a light on this through my own journey, and hope that it breaks down some of the barriers and walls around this topic that others may have. I’ve heard so many heartbreaking stories from others now, stories that I had no idea about but am thankful I do now. Stories that shouldn’t be hidden, but shared…we should remember the children we have lost as well as the ones still with us.
This is not everything I’ve learned. And I’m sure Kelly would have more to add herself, sharing her own unique lessons. And everyone else would have others even more different. This is just a smattering of lessons that I’ve absorbed during this ten months of heartache.
Grief is love. As I will forever love my son, I will also always grieve for him.