A lot of times people don’t mention the child because children dying is a taboo. With adults dying they may make a toast at the dinner table to Grandma. When we tried to make a toast to our daughter everything went flat and everybody kind of looked at us. I thought why is it when an older person dies people feel comfortable to say “To my grandmother who died and to celebrate the string beans that we’re eating; that was her recipe…” But with my daughter, we went to a Christmas thing and my family told all the kids, the cousins, not to bring up my daughter. If we bring her up, they pretend they didn’t hear it.
Mother
We don’t need to hear this right now
I wish there was someone to call family and say “This is what you shouldn’t say and this is what they don’t need to hear right now.”
Father
Hospice
Hospice was helpful. We had a lot of nurses who come in and out. They were all great but they seemed inexperienced with the death of an infant. I’m not sure if other hospices are better at that. Because we come from a small town in Rhode Island, we didn’t have all the options as we would if we were in Boston.
Mother
I felt like I wasn’t getting anywhere
It was hard to find a grief counselor that was both a good fit for me and also that was covered under my insurance. It would have been helpful if someone handed me a list of grief counselors in my area that take my insurance and included information on their approaches and personalities. The person I ended up finding for a little while was not a good fit for me. I was working really hard at my grief and not feeling like I was getting anywhere.
Mother
Talking to the surgeons
I found that sometimes the surgeons were more difficult to talk to. They think on a completely different level. They could speak in such detail that we couldn’t always quite understand what was going on. My husband and I are pretty well educated but this is nothing that what we’re used to dealing with. So a lot of the times the nurses would help us translate for us and explain things that were helpful.
Mother
The funeral home was the one negative. They were trying to sell us this really flimsy, small casket that some people use for pets. I was so insulted. Yes, he only lived for twenty five days but they kept trying to help us cut costs. We didn’t want to cut costs. We wanted to respect his life however long or short it had been. That was really odd and annoying. They were surprised that we wanted this large funeral. And we did.
Mother
Meeting other parents in the same situation
I made friends with a woman whose son had cancer. He died three months after my daughter and other than her, I didn’t know of another parent whose child died. If I hadn’t had this parent, my grieving process probably would have been a lot worse and all I know is that she and I had each other. It was just by some twist of fate that we were put together. It would have been and I think that it would be helpful if there was a way to hook up more parents.
Mother
Grief books
There are all these grief books out about losing a child. My friends and I who have lost children joke about this because the people who read the grief books are the ones who lose the children. These books have chapters about how other people, family members and friends, can be helpful to the grieving parent. The problem is these other people never read these books so they don’t get this information.
Mother