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.

I was having a very hard time grieving when a wonderful therapist that 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.”

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.

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.

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.

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 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.

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.

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 7 years, and he still feels really close—a presence. But I still ache to touch his body so, that little back and fat tummy.

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.

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.

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.

The past few weeks have been tough. Everything is a reminder of Kevin, a spoon with his name on it, toys throughout the house, syringes in the drawer, the dozens of books on the shelf. I can hear his 3-year-old singsong voice with the things he used to say at least a thousand times, “Momma, you shut the TV off?” “Momma, where are ya?” “Momma, I want my blankie” “Momma, how come Courtney’s not cooperating” “Momma, you read me a book” “Momma, you lay down and scratch my back” “Momma, you sing hush baby.”

The “firsts” are going to be the hardest, going to the park, going food shopping, going to the Maine house, going to Target®, driving by the library and not popping in to pick up a book for Kev. I find that I don’t want to spend time with anyone who didn’t know Kevin. I’m not sure if it’s because they won’t know of how big the loss is or because I need to have people around who can talk about him and the things he used to say and do. So when people say, “How are you doing,” I say, “We’re doing.” We’re doing a lot of thinking, a lot of laughing, and a lot of crying.

It’s hard when people I have just met ask, “How many children do you have?” In the beginning I always felt that 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 2 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.

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.

On the anniversary of my son’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.

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.

From the minute I turn the calendar over to August, I’m on a knife edge. The twentieth of August just pulses on the calendar. I become depressed, spacey; I’m just in a very bad mood. I get sick a lot those first 3 weeks of August. But when it’s over, I begin to relax and look forward to fall.

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.

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.