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Parents of a very sick child find it painful to imagine what life will be like without their son or daughter. But no matter how much you may try to block such thoughts, they do intrude into your thinking and you can find yourself wondering about what it could possibly be like to continue to live and care for yourself, your spouse/partner, and your other children if your child dies. It is ok to allow yourself to have these thoughts and feelings.
Sometimes one parent will want to “try everything” and the other parent will want to move to comfort care. People may mistake this for one parent being more “ready” for their child to die. In fact, readiness is not the issue at all. What is really happening is that each parent is coming to a different answer about what is best as they watch and listen to their child. Up to this point, they have been united in their fight against the cancer, even if the odds of cure or even remission have been poor. Now that the likelihood of controlling the disease is improbable unless extremely aggressive treatment is provided, each parent is grappling with “what do we do?”
These differences in how we each look at life and - very importantly - the afterlife is one of the early signs that how we handle our grief will be different for each parent and for each family member. No one way is the best way, but one way may be better than another for a particular person. Most likely, you have already realized this about yourself and your partner. Still, it can be hard not to feel angry, hurt, annoyed, or frustrated when these differences surface between parents, between you and other members of your family, or between your family and others.
Involving siblings in the end of life of your sick child can help them develop a sense of being needed and feeling important. For siblings, this is a time to make up for or undo some of the thoughts and feelings (of being left out, of not getting as much attention or as many gifts) that they have had since the time of diagnosis, even if they have not shown their distress.
Sharing memories is important for everyone. The memories that everyone wants to have are of things like “Remember the time I gave him a…” or “I think she really liked playing with me.” Doing something as simple as making a card or drawing a picture, blowing up some balloons, playing a board game, or watching TV or a video together can be very helpful for siblings. Let your children talk privately with each other. They may speak more freely among themselves than with you. Above all, help your children build a set of memories that will remind them of their brother or sister not only with love but also with the feeling that they contributed to making the illness and its treatment more bearable.
Grandparents grieve not only for their grandchild but also for their own child – you or your spouse - who is going through such a difficult time. They want to help but often don’t know the best thing to do. One of the most difficult aspects of the time before a child’s death is that there is much uncertainty about exactly what will happen and when. It is hard for you and for them to wait for events to unfold. They know that no one can predict the future, but their anxiety as they watch you as the parent and your child, their grandchild, go through this agonizing experience makes them want to step in and relieve you of this terrible burden. Think of yourself as a parent, and what you would want if your child were going through such a difficult situation. And, try to give them the benefit of meaning well even if their attempts are clumsy.
You may already know from your own experience that being the friend of someone who is going through a major life crisis is hard. You may remember hoping that certain topics wouldn’t come up because you weren’t certain that you could say or do anything helpful. Or, you may remember saying something and then thinking you had used the wrong words and your comment had actually been hurtful rather than helpful. Many of your friends are experiencing this as you go through this challenging time.
There are things you want and need to talk about. Some of these things you have likely discussed with your spouse or partner, other family members, or your health care team. But sometimes you want a friend as a sounding board. The harder it is to say something out loud, the more it hurts inside. Being afraid, unsure, and torn apart are all feelings that you as the parent of a dying child may have. It is normal to wonder if you are doing the right thing—after all, not many people have had to make these kinds of decisions. You may find yourself thinking about questions you never imagined even being able to consider like, “which funeral home should we choose?” or “I know they’ll ask about an autopsy, what should I say?” or “can you make an organ donation if you have cancer?”
Well-meaning friends may tell you not to think about such things, but you know that these questions are part of trying to prepare for what you are dreading but know is coming. Let your own feelings be your guide.
This can be an emotionally turbulent time for members of your child’s healthcare team. Some things they may be feeling are a sense of failure, anger, or guilt because they have not been able to cure your child, a sense of loss because you and your child have become important partners in fighting the cancer, and sadness because they have not only cared for, but also cared about, your child. Some members of the team will show these feelings. Some will feel embarrassed because they are not sure what to say. This may seem strange to you since they may have cared for many very sick children before.