Things that do not help

Back To Life! A Personal Grief Guidebook

Personal Guidebook to Grief Recovery

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Please do not say to the parents: I know exactly how you feel. Its a blessing her suffering has ended.

Thank goodness you are young enough to have another child. At least you have your other children. Be brave. Time will heal.

God doesn't give anyone more than they can bear. It was God's will. He's in a better place now. God must have needed another angel. Its lucky this happened to someone as strong as you. Don't worry, in time you'll get over it.

• Why did you decide to cremate him?

• How is your marriage holding up?

• You need to be strong for your other children. Please do not say to the siblings:

• You need to be strong for your mom and dad.

Even if a bereaved parent has deep religious faith, it is often tested by their childs death. Parents are not comforted by well-meaning friends who assume faith is making the grief bearable; indeed, many parents find it to be infuriating. Its better to just say "I'm sorry."

In the months and years following the child's death, any of the following might not be appreciated:

• Its been six months; its time to put the past behind you.

• You shouldn't be feeling that way.

• Don't you think you should give away all of his clothes?

• Doesn't it bother you to have her pictures around?

• Please don't talk about Johnnie, it just stirs up all those memories.

• Its not good to just sit around, you need to get out and have some fun.

Don't let your own sense of helplessness keep you from reaching out. Pretending that nothing is wrong or being afraid to talk about the child who has died hurts grieving parents.

The following are suggestions from parents on what not to do:

• Don't remove anything that belonged to the child who died, unless specifically asked to by the parents.

One family member took my son's toothbrush out of the bathroom and threw it away. I missed it immediately. She probably felt that she was doing me a favor, but it made me so angry. I needed to keep things. I have his hair from the second time it fell out, because he wanted to save it, and I've kept his teeth which had to be pulled during treatment. I just need to have those things, and I resent people who insist you must clear out a child's things. Parents should be able to keep things or get rid of them—whichever is comfortable— regardless of others' opinions.

Christie's room is still her room. We still refer to it as Christie's room. People just don't have the right to say you shouldn't leave that room empty: it's not empty, it's full of her life. I know that they are not trying to hurt us. It just bothers them to see that room. Sometimes it is just a reminder of death; yet, there are times when being in there and surrounded by all her things brings us closer to her and her time with us.

• Don't say anything that in any way suggests that the childs medical care was inadequate. Parents already feel intense guilt over what should have been or could have been.

I can't tell you how many people said things like "If only you had gone to a different treatment facility," or "if only you had used this or that treatment." What people need most is support for what they are doing or did do.

• Don't look on the bright side or find silver linings.

I became unexpectedly pregnant the month after my daughter died. I can't tell you how many people said things like "The circle of life is complete," or "God is taking one and giving you another," or "God is replacing her." She can never be replaced. It was horrible to hear those things, and I felt it was unfair to both the unborn baby and to my daughter who died.

• Don't drop bereaved parents from the support group. Talk about your options; grief-stricken parents have enough silence in their lives.

When my daughter was terminal, in really bad shape, I went to the support group. We had all bonded and were very close. I felt guilty because I really wanted to cry and was trying to hold it back because I didn't want to upset everybody else. All of a sudden, I felt like I was the alien, like you feel when your child is diagnosed. Here I was in a room full of people I loved, where I had felt safe. Now I was alone again, this time with no hopes of Christie's recovery. It was truly the end. I never felt more scared or alone.

Our support group was run by two social workers from the two local hospitals. The rule was that bereaved parents could come for one visit after the funeral to say good-bye and that was it. They were out. Two parents in our group lost their children, and we had a struggle with the social workers about changing the rules. They were adamant that the two groups of parents should not mingle, that it would be too upsetting for the parents of kids on treatment. My son was on treatment, and I felt strongly that we shouldn't abandon our friends in their time of greatest need and that we would all benefit from sharing their experiences and grief. In the end, we compromised by having the bereaved parents stay in the group for a year, then they would become a member of the new bereaved group. Both groups meet at the same time and place, so we socialize together after the meetings.

We don't have a support group or a bereaved group per se, we just have frequent gatherings. So we all see each other almost monthly, and there is no issue of losing your friends if your child dies.

Don't make comments about the parents' strength.

People would say things to me like "You're so strong," or "I just couldn't live through what you have." It makes me want to scream. Do they mean I loved my child less than they love theirs because I have physically survived?

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