Recently, someone I love shared news with me that I experience as difficult and painful. In our conversation, we chatted about how others she told received the news and she shared that it went as expected, with the other person taking the lead from her. She said she was honest but optimistic, and that led us to a conversation about how telling the truth, even when hard — and maybe especially when hard — is so very, very important. There are times when we receive difficult news, “bad news”. Other times, it’s we who have to deliver news that is painful, difficult, or scary and when we do, what we want most is to make it the least of all of these things as possible — and as a result, well-meaningly, lie. This is mostly the case with our children. We do our best to make things lighter or easier by fibbing or lessening the news: I’m going to be just fine, there is nothing to worry about, mommy has a little cancer, Buddy the dog went to a farm where he was really needed, your sister’s life is going to be just a little different than yours.

So how do we tell the truth when the news is scary, sad, or bad?

When Téa was diagnosed and I learned that sudden death, early death, and major cardiac and gastrointestinal issues were all likely with Rett I must have had a reaction but I don’t remember what it was. I think it’s that buried…and probably good that it is. I do remember having to answer the question her sisters asked me: “Is Téa going to die?” The strongest temptation for any of us as parents is to lie and as many of us have learned over time, lies thin out and eventually expose the truth leaving mistrust dust in the air that never quite settles. This is true for any kind of news, by the way. We often want to minimize giving kids the news that their sibling is sick or has a disorder. There is a wish to make it seem as palatable as possible, and in working to achieve that, we end up actually creating a larger issue because when we look for ways to say something without actually saying it, information becomes blurred, questions cling to air unanswered, and the trust we’ve built begins to ebb away. Being honest with the girls has always been the only way to be. Whether it bet to convey information or when responding to their questions I answer in relation to their age, which means being truthful in the answer but also using the correct language. “Yes, Téa might die like all things and animals and people die, but she’s strong and healthy and we will all be part of her team with doctors and nurses to keep her health as strong as it can be just like we do for you and your sister.” My goal isn’t to assuage their feelings about death or take the scare away; it’s to acknowledge and address it. When we told the girls that Téa has Rett, she was quite young. I did by the way, also tell Téa that she has Rett. Think about that; I had to tell my daughter that the reason she was falling over, not being to use her hands and that the horrible shakes she was having are seizures. I told all three that her condition will make it hard to do the things she wants to do and sees other kids doing. That she was going to have to work harder, deal with bigger emotions and challenges than her sisters would. Have you told your child the name of their condition? Do you wonder if they wonder about it or about themselves? In the last four years, I’ve had two friends diagnosed with cancer and both of them had to tell their children who were all under twelve years old. Both of them told the truth to the extent of the knowledge they had. That’s brave and it’s hard. We don’t have all the answers at once, usually, information unfolds in time — and this is as true for a disease as it is for a disorder. And that’s a great place to start: telling them that we don’t have all the answers but that we will share them as we get them. Let’s go deeper into how to give difficult news.

One: Break the news down into pieces

1. Introduce that you have news: I/We have news to share. It’s difficult/sad news and we are going to tell you the truth and answer your questions 2. Invite questions: That’s a good/interesting/thoughtful question. I’m not sure yet, but I will tell you once I find out. 3. Empathize: I feel scared too. I think it’s natural to feel scared and the way to feel better is to talk about it. Do you want to tell me more about what you’re scared of?

Two: Give them a plan

When my 10-year-old was worried about what would happen if her dad and I die I told her about our plan. I told her we have a plan in place and shared that they will live with a relative and that aside from feeling sad, everything that they are used to being taken care of will continue to be taken care of. That likely their school wouldn’t change and there would be the necessary money for things they count on to continue: soccer, birthday parties, outings. I assured her that they would miss us but also feel good again too. Also, that I would haunt them…but that’s just my humor and thankfully theirs too. Kids are going to follow your lead and believe you, so if you lie even if it’s with the very best of intentions it will erode bits of the trust they place in you. This is true of any topic, any news, any questions they are seeking answers for. If they know they can believe you, they can relax and trust you. Break that trust, and you won’t ever get it back fully intact.

Three: Be transparent about your own feelings

Being transparent makes you believable and trustworthy. When we let it be seen that we are experiencing difficulty with a situation, we are showing our children that it’s natural to feel confusing, big, scary and even contradictory feelings. It’s what being vulnerable is about. It signals to them that they’re not alone in whatever feelings they may have and increases the likelihood that they’ll open up and be able to work through how they feel in healthier ways. I check in with all three of our girls about what they think and feel. Because Téa uses assistive technology with eye-gaze to communicate what she needs, wants, thinks and feels I model expressing feelings. What does it mean to “modeling expressing feelings”? It means that I use her device or a companion device (pictures, words on a page or another tablet) to describe how I feel about something going on in  life. I might tell her about a frustrating experience at Costco where I wanted to ram everyone with my cart and model it by tapping the words “frustrated” “very” “too many” “people” as I speak. It allows her to see me look around her device for different ways to show what I mean. Sometimes I ask her, “Téa, where can I find the words for feelings?” The more I show her that it’s safe, positive and even wonderful to talk about feelings, and the more I show how to do it, the better. Several months ago she was struggling to eat and couldn’t keep anything down. It wasn’t a gastro or food poisoning. It was something else (which we still haven’t figured out but seems to have resolved) and we got a same-day appointment with her pediatrician. She and I arrive at the office only to discover I took us there a day early — the appointment was for the next day and I lost it, crying and gasping that I was so worried and we needed to see her doctor even if it was the wrong day. Assured we were being worked into a spot that day, I steered the wheelchair with Téa laying back, eyes closed, to the waiting area took a seat and let out a muffled sob and heard“sad-mom-crying” to which I look up surprised and reply, “yes! I’m having big feelings today, sad feelings” and as I proceed to attempt to show that it’s okay to have big feelings and it will still be okay she interrupts me with the best use of the word I have come across: “Drama Queen.” That cracked me up — all of us in the waiting room burst out laughing. I had put that word on her computer because her sisters had been driving us nuts and I thought she might want to say something about it. I hadn’t even modeled it or explained it — she just knew. And she said it to me. On days that I struggle with her condition, it’s obvious. And so, to make sure that there isn’t a question mark over my kids’ heads as to why I’m short with them I tell them that I’m struggling but that I’ll get through it. I check in with them, give them permission to swear about how they feel. For my 12 yr old, the swearing is the F-word. For my 10 yr old it’s damn.

It’s not bad news for everyone

In the anecdote I shared above, the situation was bad for me and not bad for Téa. For her, she was possibly (likely) feeling unwell and that was it. It was hard for me to understand, much less accept, that news could be received in a way that differed from the way I took it. If I thought it was bad — it was automatically universally bad. Time…and marriage, to be honest, has shown me that what something means to me isn’t necessarily what it means to another person, nor does it shape the same feelings. News is simply information we have to share. It can be excellent, exciting, anticipated, difficult, scary, unpleasant and many of those things at once, even. But what it will be experienced as or to what degree differs for each of us, which is why when we share it, it helps to say we have news and not qualify it. Perhaps, your child will take the news with more ease than you anticipated. When we categorize the information as scary, sad or bad it can cast doubt about how they interpreted the news: should I be more upset/worried/scared than I am? I am missing something? Siblings, in particular, need to know what the disease or disorder will mean in the context of their lives, how it will possibly affect them; if you have a plan in mind or see your schedule unfolding with appointments, fill them in about it. Book time specifically with each sibling and always tell them the truth.

Written by

Ariana Jalfen