After one of our FGP kids dies, I hear the questions, “How are they (parents) doing?” and “What do they need?” regularly from our volunteers, board members, friends of theirs and other people in the community. Because we lost 2 in a month’s time, these questions come up every day. I always pause before I answer because they are such complicated questions. The answers to these questions are even more complicated. The reality is that after the loss of a child, the family will never be the same. Plain and simple they are no longer the family they were the day before the child died. Now they are different people for their experiences, for the hole in their heart and homes and for having watched their beloved child take his or her last breath even though they were certain their child would be the one to beat the odds.

So to answer the question of how are they doing? It varies from moment to moment and family to family and it will always be that way.

To answer the question of “What can I do?”: The constants I have heard from families are the following:

  1. SAY THE CHILD’S NAME. Don’t avoid the topic. They WANT to talk about the child and sometimes they are just waiting for an opening to talk about him or her. They want to reminisce or hear how their child impacted you. Bring up the child in any way you possibly can. Even if it is as simple as, “I know you must be missing __________.” because guess what? You saying the name is not going to make the parents suddenly think of the child. Their child is ever present in their minds and hearts. You mentioning it may make them get teary but not in the way you might think. Your words won’t make them miss the child more than they already do. What saying the child’s name can do is bring them comfort by showing them that you remember their child, that he or she existed for a reason and still matters.
  2. Please don’t expect them to comfort you. The loss of a child is really, really brutal but you should go to your friends and family for comfort not to the child’s mom or dad. They need to be comforted not do the comforting.
  3. Please don’t pity them. Seeing a parent and looking at them with pity really doesn’t help things. It makes them want to avoid you.
  4. Show up. Just show up and don’t stop. Even if they are busy or don’t seem to want you there, just give a hug, a kind word, a coffee, lunch, a resource, or a book. They will remember that you showed up and even it they don’t seem to appreciate it in the moment, they will feel less alone and that is what matters.
  5. Remember that the service being over doesn’t end their story. In many ways the days after the death are so busy with planning, people and numbness the families are barely facing their new normal. It is then when the services are over that they will need you. When the house gets quiet and all the friends & visitors go back to work and their lives, that is when things get real. And tough and messy because suddenly, not only is there no longer a purpose in their day to care for a sick child, but now their child is gone. And with that comes more emotions than this blog has space.
  6. Please choose your words carefully. Avoid the cliches:
  1. Time heals all wounds – no actually it doesn’t. These families will never stop missing and grieving for their child
  2. He or she is in a better place. You may believe that but many of our parents believe there is no better place for their child than in their arms.
  3. Everything happens for a reason. There is no good reason for a parent to have a child die. None. And while you may believe that everything does happen for a reason, that is your right to believe it, but please be careful of saying it to a parent who is raw with grief and loss.

We can’t change the diagnosis or the loss but as an organization and as people, we can help make it a bit easier even if for a moment.

Have you experienced the loss of a child? What do you suggest?