Throughout my career, I have assisted many families in processing grief & loss and have helped parents/guardians/caregivers speak to children of varying ages about the difficult subject of death. However, I have had personal experiences with profound grief as well. All within a thirteen-month period, I experienced the death of my son, Clarence, in utero, followed by the death of my nine-year-old stepdaughter, Madeline, to Diffuse Intrinsic Pontine Glioma (DIPG), an aggressive cancer of the mid-brain that almost exclusively affects children.

Therefore, I have had first-hand experience talking through big emotions with a terminally ill child and also have had to explain death, and young death at that, to my own children, nephews, friends, and family.

Finding helpful educational children’s books on grief & loss proved challenging, so I decided to put my efforts towards writing As Grieving as Can Be, the third book in my “As Special as Can Be” children’s book series. Unfortunately, it may be a year or two before this book is published, but my manuscript is complete. I promised an addendum in the form of a blog on my website to address speaking to children about terminal illness.

My nearly-four-year-old daughter and five-year-old son have currently been in an inquisitive phase about the concept of death and wanting to know all about their big sister, Madeline. This phase has sparked numerous conversations and a wealth of emotion including grief, sadness, fear, and worry. Given my recent influx of challenging and related chats with my own children, I figured now was a meaningful time to write this blog.

To explain the jump to Suggestion #5, the blog will begin here, as it follows the flow of the As Grieving as Can Be manuscript:

Suggestion #5

Terminal Illness in Children

If a child does happen to have a potentially fatal disease or a terminal illness, you may be unsure about how to broach this topic with your child. You are not alone! There are mental health therapists and social workers all over the world that are competent in assisting with these difficult conversations. Help is available near you. Search for mental health services in your area. There are also hospice chaplains that can support you, your child, and your family in identifying your belief systems, explaining death in an age-appropriate manner, and creating a calm and peaceful space for all to talk openly and ask questions. Please reach out!

A simple rule of thumb is to be honest and keep information age appropriate. If a child asks what’s wrong with them, tell them the name of their ailment and what that means. If they want to know what’s going to happen next, talk to them about their treatments and what to expect. Children do best when they have time to process information, so if there are injections or medications that will make them ill, tell them in advance so they have time to mentally prepare.

Let them know all the ways you, their supports, or the doctors will help keep them comfortable. Develop plans to distract them from their discomfort. Some ideas may include:

· listening to their favorite music;

· reading books;

· downloading their favorite shows or movies;

· bringing a beloved blanket, stuffed animal, or toy;

· having a game, puzzle, or Lego kit on hand;

· packing a variety of fun snacks;

· informing them about any available medications to calm their stomach or numb their skin before needle pokes;

· keeping ice water and emesis bags nearby; or

· having them wear comfy clothes and bringing extra clothing.

Children of all ages tend to be perceptive and in-tune with their bodies. Madeline’s oncologist told us that children typically intuitively know they are dying long before they share their thoughts and questions with a parent/caregiver. So, when they eventually ask, I advise being truthful—hard as that may be. Above all, you want them to trust you and know that they can come to you with the big questions.

Prepare in advance for discussions about death and what happens when you die. Create a statement that captures your individualized beliefs. Consider writing out your answer in advance. State your beliefs, keeping your answer short, sweet, and as uncomplicated as possible. Belief systems are often complex, but for children and youth, stick to the basics. Older children may need a little more information, while younger children may only need a few simple sentences. Then follow the child’s lead using developmentally appropriate responses.

Children are trying to wrap their minds around the very complicated topic of death. Therefore, especially for little ones, I suggest staying away from what many might deem the scarier topics related to death. Topics such as Hell or Satan, even if this is a fundamental part of your belief system, may cause unnecessary anxiety, fear, and even panic in some children.

Children will respond in so many ways to the realization that they are dying. For instance, you may expect a child to have a profound reaction, but they have very little reaction at all. Or maybe you expect the child will express a flat affect and, rather, they express big emotions. Meet them where they are emotionally. Sometimes a long, silent, and tearful embrace is what they need. Then, when ready, keep talking.

If you want your child to hold onto a semblance of hope, in a hopeless situation, then I suggest getting involved. Join a foundation to find a cure for the child’s devastating disease. Look into participating in a clinical trial. Let them know that there are smart people working day and night seeking a cure for their disease. Some brilliant doctor or researcher out there will eventually be successful! Maybe your child wants to be part of that work in some way.

Regardless, this is a time for making memories. Within reason and family budget, talk to your child about what they want to do with their healthy days. Are there places they want to go, things they want to see, people they want to visit, projects they want to complete, crafts or artwork they want to create? Be present. As heart-wrenching as this time is and will continue to be, every moment is a chance to form new memories.

Terminal Illness in Adults with Children

This section will be briefer, as the sentiment is largely similar to the section above. Please seek help for yourself. A terminal diagnosis can feel isolated and lonely for many. Support systems and loved ones may intuitively avoid the topic for fear it would upset or remind you—as if you could possibly forget! Once you are ready to talk, others tend follow your lead. Your voice gives others a sort of permission or acknowledgement that talking about your illness is now acceptable. Choose who you initially talk to wisely. When you feel truly heard, you can reasonably expect to feel seen and connected too.

Help is also available if you are struggling to envision how to approach the topic of your terminal illness with your family and your children. There are mental health therapists, social workers, and hospice chaplains to support you and your family in creating a calm and peaceful space for all to talk openly and ask questions. Search for mental health services in your area and your local hospice services will connect you with a chaplain.

Again, a simple rule of thumb when talking with children is to be honest and keep information age appropriate. If your child asks what’s wrong with you, tell them the name of your ailment and what that means. If they want to know what’s going to happen next, talk to them about your treatments and what to expect. Let them know if your treatments will require you to be out of town for periods of time, if you will be ill after treatments, if you will lose your hair or if they can expect other physical changes to your appearance. Let them know—no matter what changes on the outside, you are always the same person on the inside!

Children need to know that they didn’t do anything to cause your ailment and there is nothing they can do to heal the disease either. They will need lots of reminders that they are loved during this time.

When talking about death, create a statement that captures your individualized beliefs. State your beliefs, keeping your answer short, sweet, and as uncomplicated as possible. Stick to the basics staying away from what many might deem the scarier topics related to death. Then follow the child’s lead using developmentally appropriate responses.

Meet your child where they are emotionally. Some children may be instantly devastated by the news and dissolve into a puddle of tears. Some children may be shocked into silence and appear emotionless. Some children may seem agitated by the news and start acting out at home or even at school. Some kids might seem completely unphased.

If yours is a child that is acting unphased or emotionless, it’s normal to feel hurt, rejected, and insignificant. But remember, they are just a child dealing with profound information. Their world feels confusing, chaotic, and turned upside-down. They are processing the knowledge in the only way they know how. With kids, processing doesn’t always look the same way that it does when adults process new information. Give them time, but in the meantime, keep talking.

And, of course, this is a time for making memories. Within your physical and financial abilities, consider how you want to make memories with your children and your family. If there’s anything positive to be said about terminal illness, it might be time to communicate. In some cases, you may have a window of time to say the important things to those you love.

For older children, are there talks you want to have now about morals and values that are important to you that they hear and understand? For any aged child, are there things you want to put in place now that you want to be remembered later? Some ideas may include:

· writing letters or preparing recordings that you want your children to receive over the years or on special occasions;

· purchasing gifts now that you want your children or family to receive at certain moments in the future;

· setting aside personal belongings for your children or family with explanations of their sentimental value; or

· writing a memoir as a keepsake for your loved ones.

There is no right or wrong way to handle this situation. You will surely need time to cope with your own emotions related to your diagnosis. In your own time and on your own terms, begin identifying a plan for your children and family with emphasis on enjoying each other, making memories together and continuing to live.

(The opening artwork was chosen for the daffodils that frame the bottom of the image. In 1986, the Marie Curie charitable organization in the United Kingdom chose the daffodil as a symbol for better end of life care for all. The daffodil symbolizes hope and renewal and Marie Curie selected the daffodil to represent care and support through terminal illness.)