The actual process of leaving the hospital when you stay there for so long and going back to your life is really a tough thing. It’s like walking into this other world where nobody understands. How are you supposed to go back and go to the grocery store and do these things when nobody else knows what you’ve gone through? The hospital should be involved with and make sure bereaved parents have some guidance about how to start over and where to go.
Mother
We didn’t want any of the neighbors to see us
When she died, we went home at night on purpose, instead of during the day. We didn’t want any of the neighbors to see us driving in. We had such a great neighborhood that was so connected but we weren’t ready to talk to them. How do you ease back into that? It’s tough.
Mother
His presence
You know, I feel Andy’s presence around me. I feel him in my house. I feel him across my bed. I honestly do, because that’s what he did when he didn’t feel good. He would be tough in front of his friends, but when they were gone, he would go lay across my bed and stare in my face. ‘What’s wrong?’ ‘Nothing.’ You know, because he was too afraid I was going to take him to the hospital. Sometimes I walk past his room and I swear I hear noise from his room. I swear I hear noise going up and down the stairs in the middle of the night, the sound of him munching on something.
Mother
I’m empty armed
The immediate days and weeks and months after she died were full of feelings of shock and loss. Suddenly I’ve got nothing to do. While my daughter was alive, I was running around like a chicken with my head cut off taking care of an infant and a two year old. Now all of a sudden I’m empty armed.
Mother
I think that the hardest thing for me moving forward, and I think it’s difficult for my husband as well, is defining ourselves as parents. People view you in a different way as to whether or not you have parented vs. haven’t. It’s hard when you meet strangers and they say “How many kids do you have?” And you don’t necessarily want to go into the whole “Well, I had a child but he passed away…” with a complete stranger. Navigating that has been a really difficult challenge for us because you don’t want to not honor your child’s memory, but each of us has come to a place where you talk about it and by saying that you don’t have any children doesn’t necessarily dishonor his memory in those moments in time when it’s not, but it doesn’t feel right to go into full disclosure.
Mother
The decision not to have more children
On the negative side, it created a situation in which my husband and I are choosing not to have children biologically, but making a decision about adoption was a lot harder because he was our only child so we’ve been grappling with that.
Mother
My identity was stripped
I don’t know where I’ve heard this but usually parents talk about not wanting to be alive but they hardly ever follow through. Any therapist who works with grieving parents knows that that’s a normal feeling. If you can find some purpose… people who have other children have a lot of purpose in their other children, but for families like myself, who have an only child, it’s particularly challenging because we felt like we’ve lost our role of being a parent, we lost our connection to the culture of parenthood, of community connection. All of a sudden, we are not parents anymore, active parents. For me, it was like my life was just completely taken from me and I was wandering around aimlessly wondering “Who am I? What am I going to do with my life?” My identity was just kind of stripped.
Mother
You have to adjust
I remember saying to my oldest daughter before Jackie died, “I’m worried about losing my sense of identity,” because I am the mother that looks after Jackie all the time. I’m a violinist and I do other things, but all of that is shaped by Jackie and what I need to do to look after her. So of course, now Jackie’s gone and that whole space has opened up. You have to adjust. You have all these hours which were used to think about and look after Jackie. You’ve got to think about what you’re going to do with those hours now. The whole idea of thinking about Jackie is gone. It was taken away from me and it leaves an empty space. You have to somehow redirect that.
Mother
Complicated
It’s a complicated process. You think about your relationships with others and it’s complicated because it depends on how that particular person relates to you after you’ve lost your child. People don’t know what to say. People don’t know how to come along side you and when you’re in the midst of deep grief. Relationships go through interesting changes. We all grieve terribly differently so the friction and the tension during the grieving process can be enormous. I think all relationships change after such a loss.
I gave up my job in 2000 and I had some of the same issues as my wife. Where do I go from here? My life is defined as “before Jackie” and “after Jackie.” I just cannot imagine it otherwise because it has had a momentous impact upon who I am, what I think about, my emotional intelligence, my value system, and the kinds of things I want to do and don’t want to do.
Father
Another world
The actual process of leaving the hospital when you stay there for so long and going back to your life is really a tough thing. It’s like walking into this other world where nobody understands. How are you supposed to go back and go to the grocery store and do these things when nobody else knows what you’ve gone through?
Mother
The routine suddenly stops
It became such a routine for us living at the hospital for that short period of time. I’d get up, I’d go and use the breast pump then we would order breakfast. Ok, now we check on him, now we do this, then we can do the CarePage. It was just silly things, but it was the routine that got us through. It just became the way of passing the day. All of a sudden that stops and everything goes back to the way it used to be.
Mother