I had this one woman tell me “When you are a grieving mother, you become a better surfer.” I said “What do you mean?” She said “You learn how to ride the waves of grief better.” In the beginning, those waves just knock you on your ass and there is no riding it. I thought that was a really good analogy. There are still days when the wave hits and I’m knocked about and there’s nothing I can do about it. But there are more days when, not that I embrace it, but I do because the grief that I feel over my son has just become a part of who I am. I can either fight it and say I need to get over it, or I can embrace it and say ok this is now a part of who I am. What it boils down to is that you can choose to drown in the wave of grief, or become a better surfer.
Mother
You will get up
I used to say before that grief is like a tunnel and when you get to the end of the tunnel, you’re done. But you’re not. When you get to the end of the tunnel, you’ve gotten to a point where you can accept what has gone on. It’s not like the beginning of the grief is at the other end of the tunnel, and now you’re so much further away from it and you’re great. That’s not necessarily what it means, but you’ve made it through. It is dark and it’s scary, and it will literally knock you to your knees, but you will get up. You have to. There’s no other choice. I guess that’s the beauty of human nature.
Mother
Crying in the Shower
I remember thinking that the best place to cry was in the shower because nobody could hear me and nobody would bother me so no one would really know how bad I felt. That worked for a while, but the more you sort of choke back the way you feel, the worse it becomes. You’re going hit that rock bottom whether you fight it tooth and nail or whether you just accept it, you’re going to hit rock bottom, and it’s not going to be the day that your child dies, it’s going to be two months later, three months later…
-Mother
I don’t have this thought very often but it’s one of the hardest and least helpful thoughts. I wonder “What would they look like now? What would they be like now?” It’s a really natural thought but it’s completely useless. It hurts.
Mother
Automatic coping mode
I guess immediately after Paulina died, there was shock and denial. I didn’t have the anger so much at that point. I went into my automatic coping mode. We were in a different country. We had to move, it was awful. The strength of what you’ve gone through with Paulina, the resilience that you’ve built by going in to the ICU every day, and giving your baby as much positive energy as you can, you still have that; and it takes a long time for your body to come out of that flight or fight mode. I would probably say that I’m only just unwinding a little bit from running on adrenaline for nearly a year.
Mother
“How many children do you have?”
I really avoid situations where I will be asked that question “How many children do you have?” because I just really have a hard time with answering it. I think I’ve gotten better over time, but it’s still a very difficult course to travel.
Mother
You don’t understand why
At the time when you’re going through it, you have a lot of questions and you don’t understand why. To this day, you don’t understand why someone would lose a child. So that’s just what I mean, you don’t really realize it until after. You have so many emotions and feelings going through you that you don’t understand and you feel helpless and hopeless and there’s nothing you can do.
Father
The passage of time
The passage of time is a meaningless construct in terms of how close you are to your child. With the passage of time your child becomes less of a tangible thing and more of an idea. That’s a little upsetting sometimes. I got very upset at the five year mark when I realized that I was having trouble remembering the specifics of Cameron. She was becoming more of an idea that I wish I was living or feeling than my child. That was very upsetting but I also recognize that that’s the nature of death and grief. Time moves on and the way you hold onto memory and grief changes. I think it’s very healthy and helpful to carve out moments where you sit with pictures and very deliberately make yourself go there, feel it, sit with it, cry, get angry, whatever it is, and then step away. If you always hold it at arms length always then your love for your child and the sadness that you have for yourself begins to eat away at you. It will find some way to bite you in the tush. You have to very consciously make appointments to sit with your grief so that you can feel it and move on in a comforting and comfortable way.
Mother
For me it was really important to know I could go through this long road the way I chose to start it, and not to feel obligated to do the funeral, or not to feel obligated to do what other people think I should do. Rather, do what feels most comfortable at the moment. Then just take it like that day to day, day to day, because there is no one right way to do it.
Mother
A lot of my grief times are out of the blue
I’ll see something that will remind me of Libby. For example, we bought a new car which we had talked about purchasing when we had Libby but we just never got around to it. When we did purchase the bigger vehicle, I felt like she should have been here for that purchase. Out of the blue I was driving this new car thinking that Libby should be in this car. Those types of things, the purchases of anything new or a celebration for us where she isn’t physically with us is hard.
Mother
Grief is continuously changing
We live in an age and a culture that understands bereavement. We don’t live in a society that does. My husband and I don’t understand bereavement, but there are people who have really helped us. There are books that are well written. The whole grieving process is not a “shut the door and move on” thing which is what our parents’ generation did. I am full of hope that we’ve changed for the better. There’s a huge sense of loss and I have questioned many times if life was worth continuing to live. Ask us the question six months from now and a year from now because grief is continuously changing.
Mother
A struggle
Any given day, any given minute, you can have different feelings and emotions and it’s so hard because losing a child is such an unnatural thing. To get through a day is totally a struggle.
Mother
I find myself not wanting to connect with other bereaved parents. I don’t know if it’s because I want to keep my story to myself because it’s so special. Hearing someone else’s story like mine might make my situation less unique and less special. It’s very bizarre but I think that’s why I’ve resisted. When a chance meeting occurs, I go on with it and don’t have any trouble with hearing the story. I want to share it, but I don’t want to share it with other people who might say “We had it worse.”
Mother
Find a way to move through it
Losing a child is so complex in the way that you feel. You either deal with it or you don’t. It never gets easier, but it becomes more bearable. You find a way to move through it.
Mother
Conscious decisions
My husband will say to me “Pain is inevitable. You lose a child, you are in pain, and it’s a pain that you don’t expect.” You can choose to be miserable. I live every day of my life with the pain of losing him, but I don’t choose to sit and cry all day long. That is the conscious decision I make.
Mother
It’s ok
One thing that kind of stood with us was “It’s ok.” It’s ok to be pissed, it’s ok to be mad, it’s even ok to laugh.
Father
The pain is just an ache now
Her birthday and her death day are always difficult. I still cry at the drop of a hat for no reason. Does time heal? No. The pain is just an ache now but I don’t think it will ever “heal.” Seeing little girls that are about the age that Carrie would have been. The father daughter dance at weddings is tough.
Mother
The big thing for me is to choose to live. I literally look at myself in the mirror every morning and say “I’m choosing to live today.” I want to honor my daughter by not forgetting, by continuing to live and by being there for our son who still needs a mommy and daddy. By choosing to live, you make a decision to continue on and honor them in each and every goal that you achieve know that you’ve reached that goal with the barriers that were in front of you, with all the heartache in your heart.
Mother
Every day is a fresh day of pain that you’re dealing with
I think that the first year is the hardest because every day is a new day without them, and you’ll never have a January 1st, and January 2nd, and January 3rd, first again. Every day is a fresh day of pain that you’re dealing with. I think that it comes in waves. I recently wrote to a friend who lost a daughter on Mother’s Day, it was about a month after her daughter’s passing, and I said, and I truly mean this, I’ve come to a place where 90% of the time when I think about James, I’m extremely happy. Out of the sadness that I feel, I can also feel happiness I feel because the memories of him are happy memories. I’m not in “sad grief” anymore. I still have times of sadness and loss, but then most of the time it’s a happiness I feel when I think of him. He’s with me every moment of every day. He is a constant part of who I am. I wouldn’t say that I consciously think of him every moment of every day. I don’t have to because he is part of who I am.
Mother
It never goes away
Such a big part of your life got ripped out. You’re always going to miss that. It changes. You learn to live with it. As much as you hate it, maybe you’ll learn to accept it. But it never goes away.
Mother
Wearing that mask
We had to be strong for so many years. We had to dig down each day, each week, each year for 14 ½ years and put on a happy face even if we were feeling miserable because we couldn’t let our child see how worried we were about her. We learned really well how to wear that mask and also to get up and running.
Mother
What we’re going to try to do
We wanted to make sure that we were not doing anything to prolong pain, prolong discomfort. If he had the ability to go outside and feel the sun on his face and the breeze in his hair, and to express to us some level of happiness, then his fight was worth continuing. Our goal was to help him sustain that quality of life.
Mother
We are very proud of how we parented her, and the life we enabled her to live in the 18 months between her diagnosis and her death. There is a great peace that comes from knowing that it was a good life, well led. She was very loved. She could not have been more comfortable. Every choice we made was about her comfort. We have no regrets about her care or her life. There’s great peace that comes from that.
Mother
It was time for her to go
As much as I would take her back, I was very ready to let her go. It was the right thing. It was time for her to go. Her spirit needed to leave her body. Her body couldn’t hold her spirit anymore. Her body was done. It was time. I had no problem letting her go because I knew it was the right thing. I did not try to hold on to her for as long as possible because part of what guided Charlie and me through her illness was that quality of life was the most important thing. What we believed quality of life meant for her was as little intervention as possible. She had a terminal diagnosis and there was no cure for her. Everything that was going to happen was going to happen. The only thing that we were not interested in was prolonging a poor quality of life. When it became clear to us that the quality of her life was no longer any good, these were signs that it was in fact time to let go.
Mother