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 well-meaning others will say: “you shouldn’t think like that,” as if we have control over what creeps into our thoughts! It is not unusual for parents to feel guilty or that they are betraying their child when they have such thoughts. But, imagining being without your child is virtually universal as your mind begins to explore what your heart does not want to think about or accept.
When Parents Disagree
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.
Almost always, it is not because others don’t care but because they lack the words or actions to express how they feel. When we give ourselves time to reflect, we realize that we really did not, in fact couldn’t, have put ourselves in someone else’s shoes no matter how hard we may have tried or how empathetic we wanted to be. Unless we are willing to be flexible and forgiving, the journey through the grief of decision making as well as the grief of loss, can be a lonely one, but only if we let it. Talk to your care team, social worker, psychologist, or spiritual counselor about what you are feeling. These problems occur often and these care providers want to help you and your family give strength to each other.
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.
Many parents are unsure about whether siblings should see the sick child, especially in the ICU, if the child is on a ventilator or is attached to a lot of “tubes.” Experience tells us that siblings need an explanation for the equipment and what it is used for, but they are likely to quickly forget the paraphernalia and just focus on being with their brother or sister. Seeing can be so much better than just imagining what their brother or sister is going through, even if the reality is a difficult one. You can also help them prepare by planning what they want to tell their brother or sister, even if the brother or sister is not able to respond. The only time it would be best NOT to bring a child to see a sick brother or sister is if the sibling does not want to visit. But, even then sometimes talking about what the sibling is afraid of may help overcome his or her fear and distress so that a visit becomes possible. Sometimes, using Skype or sharing some pictures from the hospital can serve as a good bridge to an actual visit. Ask the Child Life Specialist who is working with your ill child for assistance in explaining the disease and its treatment to the brothers and sisters if this hasn’t happened already. The Specialist may have suggestions for age appropriate books for them to read or for you to read to them. If time permits, the Specialist may even be able to stay with your family for a few minutes during the visit.