Losing a child is one of life’s most horrific and painful events. There is no right way to grieve. There is no timetable, no appropriate progression from one stage to the next, and no specific time when parents should “be over it.” The death of a child shatters the very order of the universe—children are not supposed to die before their parents; it seems unnatural and incomprehensible. Losing a child, especially after such a long and grueling battle to save him or her, feels cruel and unjust. When a child dies, parents mourn not only the child, but all of the hopes, dreams, wishes, and needs relating to their child. When you lose a child, you lose part of yourself and an important part of your future. Below, parents themselves share their thoughts about grief.

I truly think that it is the worst thing in the entire world. Nothing worse can happen than losing your child. There is no reprieve. None.

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My life is void of the very essential magic of Elena, the stories, the brightness of her being. Her giggles, her sweet kisses, her calling me cupcake and giving me the nosie “uggamuggums.” She would be in fourth grade Tuesday, and instead she is dead! The school planted flowers by the memorial that they gave last year on her birthday. Yes, it was hard to shop for two instead of three of my kids. I miss the games and the playing school and the calls between her friends. I miss sitting with her on my lap; I miss touching her smooth skin, touching her curly hair, and smelling her scent. I miss looking at her long fingers. But I feel that I was blessed with her life, her love of life, her friends and passions, her angels, and her beauty. I will carry her life with honor in my heart for my lifetime.

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I was having a very hard time grieving when a wonderful therapist I was seeing said to me, “You are beating yourself up about grieving. Think about it: When you enter marriage, what are you called? A wife. When your spouse dies, what are you called? A widow. When you don’t have a home and you are living on the street, what is the name for that? A homeless person. When you lose a child, what’s it called, what’s the name?” I said, “I don’t know.” She said, “Exactly. There is not even a word in our vocabulary. That’s how terrible it is. It doesn’t even have a name.”

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The biggest thing I had to learn was just to cope with whatever I was feeling on that particular day. When I feel angry, I just need to let myself be angry. If I need to cry all day, I do. I still have plenty of those days. If someone calls me and wants to take me out to lunch to cheer me up, I have learned to say no when I’m not feeling like going out. I know that it hurts other people to see me cry, but I need to do that sometimes. I just miss her so much.

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Every day when I walk out of my house I tell myself to grab the mask. I feel like I walk different than everybody and talk different than everybody and look different than everybody. It’s the worst part of bereavement, the isolation caused by people who just don’t know how to talk to you, when really all they need to do is listen and remember with you.

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I found myself getting busier and busier, thinking that I could outrun the pain. I realized that I couldn’t avoid the hurt; I just had to grit my teeth, cry, and live through it.

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My daughter was our firefly; she lit the whole scene up. When she died, that spirit was gone, and there was just a hole left. We just didn’t feel like a family anymore.

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I felt like our sick daughter was the center of our universe for so long, that now I need to start feeling some responsibility for my other kids whom I’ve been away from for so long, both physically and emotionally. I told my husband the other night that I didn’t even know if I loved the three kids anymore. I cannot feel a thing. Pinch me, I don’t feel it. Hug me, I don’t feel it. I’m numb.

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It’s hard to admit, but there was an element of relief when my daughter died. Not relief for myself, but for her. I was almost glad that she wouldn’t face a life full of disabilities. That she wouldn’t face the numerous orthopedic surgeries that would have been required to repair the damage from treatment. That she wouldn’t face the pain of not having children of her own. I just felt relief that she would no longer feel any pain.

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It’s hard when people I have just met ask, “How many children do you have?” In the beginning, I always felt I had to explain that I had two but one died. Now I just say one. I don’t want their sympathy, I don’t want their pity, but most of all I just don’t want to have to explain. After two years or so, I started to feel uncomfortable giving out my life history and then having to deal with other people’s discomfort. So now I just say one, and yet it still feels like I’m betraying him every time I do it.

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At first we didn’t feel like a family anymore. Now it’s better, but it’s still not the family that I was used to, that I want. I still feel like the mother of four children, not three. I find it very hard to answer when someone asks me how many children I have. I also can’t sign cards like I used to, with all of our names, so now I just write “from the gang.” I guess that’s not fair to the boys, but I just can’t bear to leave her name off.

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I had a visual image of our family of five. When Jody died, it became this physical square thing with only mom, dad, boy, girl, and it bothered me so much.

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I thought this morning of how I used to listen to Jesse breathe. Now I can’t hear her breathe or laugh. I can’t feel her arms around me. I remember missed kisses and late-night times. I ache. Heaven seems so far away.

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It seems that sometimes she is still so near that during conversations I can hear her comments or answers, and yet I fear the memories might fade and I so cherish the nearness. We each wear articles of her clothes or jewelry every day. One daughter is sleeping on the floor in our room, and the other two are sleeping in her bed.

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The worst times were the first two Christmases. We had to grit our teeth, put our heads down, and just get through it. We had to keep moving, never stop moving. I would have ignored it altogether if I didn’t have another child.

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Birthdays are hard for us. Greg’s birthday was June 10, and his brother’s is June 9. So it’s pretty hard to ignore. On Greg’s birthday and the anniversary of his death, we blow up balloons, one for every year he would have been alive, write messages on them with markers, and release them at his grave.

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It seems like just about every holiday has some difficult memory attached to it now. He was diagnosed on Easter, and then relapsed the next year on Valentine’s Day. I hate them both now. Christmas is always hard. And Halloween is tough because he so loved to dress up. I see all those little ones in their costumes and I’m just flooded with pain.

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I keep wondering if I should have put a stop to the bone marrow transplant, because I had no peace about it. I felt such fear and dread about her platelets and liver. And what I feared happened. I still pray to have peace over making that choice. To have peace over giving a teenager the weight of deciding all that herself. I still feel so guilty and know I’d still be kissing her goodnight if we hadn’t gone forward—and how I miss those kisses.

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I feel like Job 3:25-26: What I feared has come upon me; What I dreaded has happened to me; I have no peace, no quietness; I have no rest but only turmoil.

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This evening my heart was so saddened. I paced up and down in front of the mantel, pausing to look at each picture of my daughter. Something that I cannot describe catches in my chest, and I can’t breathe right. I look at her face and try to will it to life for a kiss and a touch, for softly spoken endearments at night. How we love all of our children, yet one missing leaves such a stabbing pain.

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I worry that missing one child so desperately pervades my very ability to be a good mom to my other three. I so wish to find joy again, to find things in life to smile about. I so wish my children could see me smile again. I pray that God will give me this thing, because it is beyond my finding in this world.

• • • • •

I had always heard that time heals all things. I was afraid of healing, because I didn’t want to feel any farther away than I felt when he died. It’s been seven years, and he still feels really close—a presence. But I still so ache to touch his body, that little back and fat tummy.

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It’s been two years, and I still feel a lot of rage. I walk down the street and see kids hanging out, smoking, doing drugs, being rude, wasting themselves, and I am filled with rage that my son—such a straight arrow, so decent, so strong—is gone.

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I feel strongly that parents should seek out other parents who have lost children. Nobody else understands as well. Nobody else is as comfortable with it. We have our own sense of humor, and we often laugh hard about things that make other people uncomfortable.

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That 1-year rule, when you are supposed to start feeling better, I’ve found to be true. Not that any of the pain is lessened, but I realized I had managed to live through a year of holidays and anniversaries. I knew it was possible to do it a second, then a third time. One year isn’t magic, but it does prove to you that you can survive.

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On the anniversary of Ryan’s death we all went to the cemetery, and his girlfriend’s parents planted a cherry tree at the foot of his grave. That was on a Sunday. I woke up on Monday feeling just as bad as I did the day before. All I could think was, “Oh hell, I have to go through that whole cycle again.” The first year did not bring me any peace.

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This morning was the 4-year anniversary of my daughter’s death. While I was at church I wanted to write in the intentions book, “I want my daughter back,” but then I didn’t because nobody would understand. I guess I’m pretty unreal in my thoughts a lot of the time.

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At church, we always sit with the same group of close friends who helped us through Jesse’s illness and are helping us grieve her death. If they begin to sing a hymn that reminds one of us of Jesse, we all start to cry, and someone produces a box of tissues, which gets passed down the aisles. People must wonder at the group that sobs through services. But it has helped me so much to have a community of grievers, it’s been a very cleansing thing. It has spread out the tears.

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I think parents need to know that it hurts like hell and they will feel crazy. But it is a normal craziness. If they talk to other bereaved parents, they will know that pain, guilt, rage, and craziness are how normal human beings feel when their child dies.

Bereaved parents are frequently reassured that “time will ease the pain.” Most find that this is not the case. Time helps them understand the pain; the passage of time reassures them that they can adjust and they will survive. The acute pain becomes more quiescent, but it still erupts when parents go to what would have been their child’s graduation, hear their child’s favorite song, or just go to the grocery store. Grief is a long, difficult journey, with many ups and downs. But, with time, parents report that laughter and joy do return. They acknowledge that life will never be the same, but that it can be good again.

“I just wish that I had armfuls of time.”

— Four year old with cancer

Armfuls of Time