What do you do when you are the parent, but are too sick to parent? How do you tell your children that you are critically ill? Here are seven tips for helping your children still be children, even when you are the one who needs care.
There was that time my father died of cancer, and I was exhausted during those months. There was that time my mother was killed, and I was a tearful mess for weeks following. There were those cochlear implant surgeries, when my head was full of staples and bandaged up and it hurt to move my neck for several weeks while I waited to learn digital sound. There were those miscarriages, where it was both pain and grief that laid me up while the world kept happening around me. Then there was this summer, when cancer called for an emergency hysterectomy and a bald head.
These were hard enough things for me to deal with, much less for my children. What do you do when you are the parent but are too sick? How do you tell your children that you are critically ill? Here are 7 tips for telling your child about your illness.
Give the facts
Children are usually intuitive enough to know when something's up. Start with what they know already, and answer specific questions they ask. A toddler will be fascinated with scars and bald heads and medical equipment and just want to know the names of things, while a five year old will play with wigs, learn words like "surgery" and "chemo", and be able to understand some very basic science lessons.
Answering direct questions will help you explain things to your children at their own developmental levels. However, it's OK to tell them that you don't know something yet. Don't tell a child "everything will be OK" when a cancer diagnosis is first given. Instead, share the pieces you do know and focus on the chosen plan of treatment. Say, "surgery will be on Thursday, and medicine will start next Friday, and I will feel worse on Sunday, but then better again by the next Thursday." Explain changes in routine: we were always big salad eaters, but after cancer we also learned about juicing. Once the kids knew why we were doing it, and how fun it was to watch the machine, it was easy to add into our morning routine.
Share what you are feeling, and model how you are expressing and managing them. When my children "played" with putting away baby clothes after losing one, the two year old kept some of the outfits for her baby dolls. My children saw me or my husband cry at different times during treatment, but they also saw us light candles at Relay for Life. We sometimes talked about being afraid for the unknowns, but also prayed and made plans for the future.
For my cochlear implant surgeries, we showed YouTube videos of how cochlear implants work. For cancer, we used construction paper to show how good cells and bad cells multiply. For grief, we used social story apps that explored emotional responses. For all three experiences, we made videos of our healing journey simply using our phone to take pictures and short videos as time passed, putting it together with music later on the computer.
Pace with the child
Children don't need all the information at once. Give them one piece at a time. We didn't talk about chemo until after surgery had happened. Let them express themselves the way they always have: playing outside, creating artwork, making music, and playing games. Family dinners foster moments for good communication, and long walks or hikes give time and space for children to bring up issues they want to share. Physical movement and creative expression are excellent ways for children to process trauma, both emotionally and physiologically.
Watch for regression, but don't expect it
Children struggling with anxiety or overwhelming emotions often regress in developmental areas. They may begin bedwetting again, lose their toilet training or become clingy with parents. They may want to sleep with siblings or in the parents' bed or need the nightlight like they did years ago. These are signs the child needs more help and opportunity to express her emotional response, and increased structure and normalized routine may also help. Some changes in eating and sleeping patterns, concentration levels and topic of conversation are expected and will settle down over time.
Rules still need to be rules, and children still need rules – even when a parent is critically ill. Maintaining structure and routine as much as possible will help children feel safe and comfortable. Helping children maintain function will empower them to express their own emotions, process their own responses, and cope with the layers of feelings and thoughts they have as the world around them changes. Before I was hospitalized, we took our children to visit another friend in the hospital to get used to it ahead of time. When I was in the hospital, we still could eat together, read books together and pray together before bedtime. When I got home but was bedridden, the children could still come tell me goodbye before school and bounce in with their backpacks after school. Websites like Parenting with Cancer can be useful, even if your illness or circumstances are different in context.
Talking to your children about your critical illness can be emotionally charged and especially difficult when you don't feel well but still want to protect and care for them. Empower your children by letting them help choose who backup caregivers can be in different situations, and identifying areas the family might need help. Let them brainstorm who from the youth group could help with the lawn or clean the house. Give them choices about who babysits, picks them up after school when you can't, or what kinds of meals people bring in when they want to help. Help them know the facts about what is going on, and find ways to let them still be children even while you are the one that needs care.