As a parent who lives with multiple chronic illnesses, a seizure disorder, and other medical complications, I have had to grapple with the question of how much should I tell my daughter about my illnesses and when. This occasionally puts me in conversations over the larger question of how much should children be told about a parent’s illness.
This is a personal issue for every parent, but for Terrence and I, there was no doubt we didn’t want to lie to Isabella. One lie would lead to another and soon enough we weren’t going to be able to keep up with our lies. We decided to give her age appropriate pertinent information when it seemed most important.
For example, a couple of years ago, I had a grand mal seizure while I was out for a run. I blacked out and fell on the concrete. I had a large purple hematoma on my forehead and right eye area. I had a gash in my right knee that needed stitches. I refused to go to the ER but called my PCP and went for an outpatient CAT scan to make sure I didn’t have any bleeding in my head. When I came home, Isabella started crying when she saw me (yes, in retrospect, I should have gone to the hospital, but I have an aversion to ERs). Terrence and I had to sit down with her and explain that mami blacks out unexpectedly and since I was outside and running, the injuries were worse than normal. She already knew that I blacked out, but had no idea of what that meant. Isabella was 4 years old. I covered her eyes to give her a sense of the disorientation I felt, and told her it was like getting a horrible headache, falling immediately asleep, and not being able to control it.
Isabella could better understand what mami was experiencing when I was lying on the bed or sofa and said, “I didn’t feel well.” It worried her more not to know why I would be speaking and then suddenly I wasn’t. Like any child, she thought it had something to do with her, but of course, it didn’t; when I needed her to make less noise, it was because I felt ill, not because she was being too loud.
We asked Isabella if she had any questions, and she had plenty. We answered them the best we could. She was very worried that I was going to die, both from the seizures and from one of the auto-immune diseases (if I catch a cold, it easily gets complicated and I end up in the hospital). We got Isabella counseling and it seemed to help.
A few weeks after the grand mal seizure episode, when Isabella was still just 4 years old, we taught her how to dial 911 (specifying that it is 9-1-1 and not 9-11 so as not to confuse her). We told her to only call if she couldn’t wake me up or if I fell and hit my head and was disoriented. During this time, we talked about other emergencies, like fires or an intruder. We told her to stay on the line with the 911 operator until they told her to hang up, and that you never call 911 as a joke; they are there to save lives. Isabella was too young to remember our address but she could remember her apartment number (now, of course, she knows her full address). And I told her to tell the 911 operator or the paramedic that I have a special bracelet (a medic alert).
Isabella is now 7 and we occasionally review what to do in case of an emergency. She feels empowered with knowledge and an action plan.
When we’re out walking, running errands, or doing an activity, she will occasionally say to me, “Mami, your eyes look glazed and tired. Maybe you’re doing too much. I don’t want you to have a seizure. Let’s just go home.” It breaks my heart that she has to worry about me, but I’m glad that there are no secrets between us. My mature big girl is aware that her mami has some limitations even if I try to ignore them. That’s one more advantage of telling your children about your illness, they’ll look out for you.