"No one knows what to say.” How many times did we hear that? No one knows what to say when your baby dies. There are no words that are good enough. As we have been going through our loss, I have found that the people around us have felt helpless. They do not know what to do or say that would be helpful to us. We are surrounded by an incredible support system and they definitely found ways to help and the vast majority of things people said and did were positive and helpful. However, there were also things that were said or done that were not helpful and in fact, were sometimes hurtful.
I’ve been asked for this a few times, so I’ve put together a list of things that people did and said that were either helpful or hurtful in the months following the loss of JJ. I think now is the right time to write this because its close enough where I can remember well, but far enough where I can look back on some of these things without going into a tail spin.
Disclaimer: this is just based on MY experience and how I react to things. Everyone reacts differently to loss and different words or actions are appropriate in different circumstances. Sometimes it just depends on how they’re feeling that day or that minute that determines how they will react.
This ended up way longer than I thought it was going to be, but I pray you find things in here that are helpful next time someone close to you loses a baby. I think a lot of these can be applied to other loss, but again, this is all based on my specific experiences with losing a baby. I apologize if some sass creeps in to this post at times, I have lots of feelings about this subject.
What NOT To Say:
The overarching theme here is going to be, don't minimize the person’s pain. Rather than minimize, validate. It’s human nature to want to fix or justify pain. I think it’s even harder for Christians because there are Truths about God’s character that come with pain that are not always easy to digest, like what He is willing to let us endure. I think as humans and as Christians, we have the need to say whatever we can to make people feel better. It’s not our job to justify God’s actions or lack of action. Here are few examples of things not to say. Some of this should go without saying, but since these things have been said, they're on the list.
Don’t say “at least.” General rule of thumb: If the sentence starts with “at least” or something similar, don’t stay it. I got A LOT of “at least he’s in Heaven,” or “at least he’s not in pain.” While true, that feels like an attempt to minimize the pain or make it OK and it's just not. Believe me, if I did not KNOW that he's in heaven and breathing with perfect heavenly lungs, we would be in a very different place right now. No matter how much good comes out of it, it will always be a bad thing that he died.
Don’t Guess Why. Don’t offer up guesses as to why the event occurred. Some tragedies are way past our understanding and we may never know why until we meet Jesus face to face. Saying “maybe he would have lived a hard life” makes me feel like you’re saying I wouldn’t have been a good mom or I would have given him a hard life or again, like its ok that he died. I had a few people say to me: “maybe God has something better for you.” What? Like what? What could be so good that it justifies the death of my son? I want to know why this happened, but I really don't need to know why.
Don't Pretend to be a Doctor. Also, don't make medical guesses. Too many people inadvertently placed the blame on me by taking medical guesses as to what happened. Unless you are a medical professional who specializes in perinatal or neonatal medicine, I don't want to hear your opinion about what happened.
Don’t try to relate. If you haven't felt their specific pain, don’t pretend like you have. Acknowledge that you cannot imagine the pain they are in. I know what it's like to lose a child, but I do not know what it’s like to lose a parent, or a spouse, or a sibling and I won’t pretend that I do - all of those things sound awful. No type of loss is better or worse than another, but they are different.
Don’t place a timeline on grief. I was asked a few times, “are you better?” that stung. That implies that I will be better at some point. That made me feel like I should be better or “over it” and that I’m burdening others by not being over it. I read this in a really great article recently:
"For as long as I breathe, I will grieve and ache and love my son with all my heart and soul. There will never come a time when I don’t think about who my son would be, what he would look like, and how he would be woven perfectly into the tapestry of my family. I wish people could understand that grief lasts forever because love endures forever; that the loss of a child is not one finite event, it is a continuous loss that unfolds minute by minute throughout a lifetime.
Don't just say things that sound nice. Things like "Everything happens for a reason" are not helpful. Saying “I know God is going to give you healthy children,” is not helpful because it is not necessarily true. It's also not helpful because future children will not fix the pain from losing JJ. Don't’ say “its going to be ok.” We don’t know that, at least not while we are here on Earth.
What To Say:
Tell them Truth. For me, the most helpful things people said were things that are true. As I mentioned in a previous post, I have had to really figure out what is permanent and the Truth of God is what is permanent. Immerse yourself in scripture now so that you are prepared to share Truth when the opportunities arise. Examples:
1. “This is not the way that things are supposed to be.” or “Death was not part of God’s original plan” were both helpful things that were said to me. We know from Genesis that God did not create death in his original plan for the world. He created life and life with Him was the original intention. He saw that it was very good. Romans 5:12 tells us that death came in the world through sin and spread to all. We also see in John 11 that Jesus hates death. He weeps at Lazarus’s death, even though he knows the outcome. God came down to earth to defeat death. That’s how much he hates it. The good news is that we know God has power over death and this is not the end.
2. “God knows every single tear you have cried and is walking with you, even if
Warning: Don’t take scripture out of context. Make sure you know what you are saying is true before you say it. Example: “God won't give you more than you can handle” isn’t actually a verse and it's absolutely not true.
Say Their Name. Losing a child is more than just the death of the child. It’s the death of so many hopes and dreams that you thought were going to happen. It’s thinking your life was going to change drastically only to find out your day to day life is STILL the same. Sleeping through the night is never annoying until you are not up all night with the child you thought you would have. Hearing a child scream is a beautiful sound when your child couldn't. I so desperately have wanted my child to be remembered. He’s a member of our family and always will be. He was a living human with a life and a purpose. Here’s a quote that I have loved:
“If you know someone who has lost a child and you’re afraid to mention them because you think you might make them sad by reminding them that they died -- you’re not reminding them. They didn’t forget they died. What you’re reminding them of is that you remember that they lived, and that’s a great gift.” (Elizabeth Edwards).
Hearing JJ’s name is music to my ears. I absolutely love when other people remember him.
It makes me feel less alone.
Validate their pain. The main theme of What Not To Say, is don’t minimize their pain. A huge thing for this category is to validate their pain. Things like: “I cannot imagine what you are going through,” “this is awful,” and “the pain you must be in is unimaginable.” are all good. I so badly just wanted someone to come up to me and say “This really really sucks.” One of the best things a friend said to me was, “Lindsey, everyone else gets to go back to their daily lives. You have to live in this every moment of every day.” It was just an observation, but it made me feel validated and seen during the pain I was in.
Keep it simple. When in doubt, keep it simple. My favorite reactions from people that I had not seen in a while was just simply a hug and “I’m so sorry for your loss. I'm praying for you.”
"The best thing you can say to a mama who has lost her baby isn't "Everything happens for a reason" or "God has a plan." The best thing you can say is "I'm so sorry for the loss of your precious baby," or "My heart is breaking for you because your child's life matters and the loss of your child matters." Validate her pain. Validate her loss. Validate the life of her baby." - A Beautifully Burdened Life
What NOT to do:
Don’t force them to talk. The most freeing thing I got in text messages was when people would say “please don't feel the need to respond.” In the very beginning, I probably wasn’t going to respond anyway, but that gave me the freedom to not have to put into words how I was feeling. Give them space and don’t force your help on them. A lot of times, Josh and I just needed to be alone to process together.
Don’t be offended. Additionally, don’t be offended if they don’t respond or do not want to engage in conversation. We received such an over abundance of support which was wonderful. However, I did not have the emotional capacity to let every one of those people in on my thoughts and feelings. As time has gone on, I have been able to talk more openly, but at the beginning, I was only able to talk to about four people about what was really going on in my heart. Those people listened and heard waves of emotions and I needed that and they were so gracious to listen and let themselves be in my grief, but I couldn’t let everyone in. That was one reason JJ’s service was so beautiful. Our community deserved to be let in on our experience, but we couldn’t do it individually.
Don’t ignore it. Again, All you have to say is “I’m so sorry for your loss.” Acknowledge it. Let them know you care and recognize that they are in pain. Just don’t ignore it and pretend like nothing happened.
What to do:
Practical Things. Some of the most helpful things people did after our loss were the most practical things. Especially in those first few weeks, I was incapable of doing anything. The smallest task felt so overwhelming and I was also physically recovering from having a baby. The whole thing was a huge shock to my system. The first few weeks after loss, their main concern is figuring out how to keep breathing. The less practical things they have to worry about, the better. My parents and my in-laws both came and cleaned our house on separate occasions. The day we got home from the hospital after being there for three weeks, two of my best friends went to the grocery store and stocked our fridge. We had people bringing us meals for months. We had so many people send us flowers (which was wonderful), but a week later, they were all dead. My best friend came over and got rid of all the dead flowers in our house. Things like that make a huge difference.
Send texts, cards, and gifts. Grief can be so isolating. Even if I couldn’t respond, receiving words from friends helped with the feeling of isolation. We were sent SO many cards. People’s words in texts and cards were just sweet reminders of the people we had supporting and thinking of us. I was also given some really sweet gifts. This goes back to the desire to have JJ remembered. I was sent multiple necklaces with his name on them. I was given a teddy bear that weighed the same weight as him. I was given frames and Christmas tree ornaments with his photo or name. I was even given a water bottle with his name on it. Anything that helps remember my son and keep him in our daily lives is so precious to me.
Continue to follow up. The pain will never go away, even as I learn to function more and more normally. After the service is over and time starts to go on, keep letting them know you are thinking of them. I have a couple of friends and family members who text me on the fourth of every month to let me know they are thinking of me and my son on his “month” birthday. It is so sweet. It may feel like it happened a long time ago, to you, but sometimes, I still feel the pain like it happened yesterday.
Be sensitive. Sometimes the hardest part of grief is the unpredictability of it. I never know what is going to throw me into a tailspin of grief. For the most part, the things that are the hardest are the things that remind me of what should have been. For me, one thing that threw me recently was being at a wedding and seeing the Mother/Son dance. That reminded me that I don't get to have that with JJ. Recently, a simple hurtful comment from someone close to me threw me into a spiral of grief for a couple of weeks. I have had conversations with women who are further along in this journey than me, and they have told me stories of things that trigger the grief no matter how long it has been. That’s the kicker… it could be years and years later, and those waves of grief can still come. Be sensitive and acknowledge that this is a lifelong battle that can take them down at any moment.
Listen. If you are one of the people that they are willing to talk to, just listen. I have been fortunate enough to have had a few friends and family members who have just sat and listened to me. They listened to me complain, listen to me be angry, listen to me cry, listened to me ramble when my string of thoughts do not make sense. They just listen without feeling the need to offer up their opinions or justifications.
Pray. Prayer is powerful. Prayer has the power to pour peace over someone who is hurting. Continue to lift them up to the Lord and pray that He would sustain them. Pray from afar and pray with them. There is nothing more loving than going to the gates of Heaven with requests on behalf of others.
You’ll hear me say over and over that grief is super messy. You can't tie it up in a bow. Some days you may start to feel OK and then you get hit by a tidal wave of grief. It’s so unpredictable and overwhelming. Having people who care and a village around us is one of the things that has helped us survive.
If you’ve made it this far, its because you genuinely care about being helpful, not hurtful when someone around you is in pain and that right there is the best place to start. Just care.