Imagine coming home one day and finding that the one member of your family that normally greets you is not there. You frantically search the house looking for them, because you know they should be home by now. Trying not to panic and assume the worst, you walk through your house room by room. You check all of their favorite spots in the house, but still cannot find them. Realizing that this person truly is not there, panic sets in. Your heart is racing as your eyes continue scanning the room. As you scan the last corner of the room and find it empty, tears roll down your face. Just when you feel that first tear hit your shirt, the front door suddenly opens and your family begins to pile into the room. Relieved that you were mistaken about the missing member, you begin greeting and counting each family member. Suddenly, you realize that the one family member you couldn’t find earlier, is in fact not there. Panicked, you ask the other members where the missing member is because they are not home. Each member gives you a blank look and dismissive “uh, I’m not sure.” You quickly notice that the other family members do not share your same concern about the missing member, and no one will give you a clear answer on their location. Frustrated, you begin to cry because you know that without the missing member, your normal routine will change. The dinner you normally receive at 7, may be served tonight at 9. The bath that is normally given by the missing family member, is now done by you alone. The song you sing before bed, is replaced by quite time alone in the dark.
The scenario I just described sounds horrifying, right? Typing it nearly gave me a panic attack. I couldn’t imagine being expected to go to sleep or function in that scenario. Well, sadly, sometimes children are expected to function and thrive, in that very scenario. That scenario represents a classic example of when a parent abruptly gets hospitalized but no one wants to inform the child. It seems almost impossible to believe this could happen, but I will show you just how easy it can.
Earlier this week I was hospitalized for an unexpected crohn’s flare. Both of my children are aware that I have crohn’s, and have a high level understanding of what the disease entails. Although we have discussed the disease with both kids, my husband and I decided that both kids were too young to understand my hospitalizations or visit me. We believed that the stress of knowing mommy was away or seeing mommy in the hospital would be too much for both of them. So, we decided that when I was hospitalized we would tell them that mommy was working late, on a trip, or some other story that wouldn’t raise concern. We believed that knowing mommy was away in the hospital sick was too much detail for children so young. Turns out, it was the lack of communication that was too much for them.
When I arrived home from the hospital after two days, I was greeted by two very excited children. My oldest daughter’s excitement quickly turned to anger within seconds as she said “I just want you to know that I am upset you didn’t tell me. I don’t think it is fair that you can decide something is too scary for me, and not give me a chance to talk to you about it.” Stunned by her words, and confused about how she knew (which I am still investigating), I found myself without words. I think the only other time in my life that I was without words was at birth…and I am almost positive that I had something to say then. But I digress. While I found myself with few words, I did curiously ask her “what would you have liked mommy to do?” My daughter quickly responded “talk to me.” She continued “I know that I am a kid and parents make the rules. I am just asking you to talk to me, even if you still do the same thing, you at least talked to me.”
I can say without hesitation that I learned a valuable lesson from the brief exchange with my daughter. I learned that while I conceptually knew the importance of open communication with children, I somehow neglected to openly communicate with MY children about MY disease. I was completely clueless on just how little information I had provided to my own kids. In my mind, my children were fully informed and only unaware of my hospitalizations. Well, they weren’t informed at all. My kids ONLY knew that mommy had crohn’s and sometimes needed to rest after taking infusions. Of course I immediately corrected this communication failure, and asked my daughter to offer tips on how parents should talk to kids about their chronic illness.
My daughter suggested one thing…and it was rather straightforward:
My daughter and I agree that conversations about a parent’s illness should not automatically be off the table because you are dealing with a child. Children are often aware of more than people give them credit for. Given this, it is best for you as the adult to frame the conversation and put it into terms that the child can understand. If you don’t, fear sets in. When framing the conversation, it is important to be truthful. Let’s face it, no one likes a liar. Adults don’t like liars, and children shouldn’t be expected to like them either. Now, being honest does not mean giving all of the horrible details, because you are still talking with a child. But, any information provided should be truthful. Again, you choose the information to provide based on the child but one critical piece of information, in my opinion, is the name of the illness. After being told off by my daughter I asked her what information she currently had and what she wanted to know. In response, she proudly recited my diagnosis and some of the symptoms. Listening to her talk made me realize that she liked knowing the name of the reason mommy couldn’t always ride bikes, or shop, or sit at the park. It was almost as if having this one little piece of the puzzle made the entire situation a little more tolerable. But listening to her talk made me realize that I neglected to grow the conversation as she grew. See, I had in fact talked with her about my illness, but didn’t continue the dialogue. As she grew, the conversation froze in time and THAT was the mistake. Yes, at 3 when I was intially diagnosed she could not have tolerated knowing mommy was in the hospital, but as a second grader she is fine with the information.
When you battle with chronic illness, it is very easy to underestimate the impact of your illness on those around you; particularly your children. In your desperate attempt to maintain a sense of normalcy to protect their innocence, you remove the one thing that makes them secure enough to continue being children…their trust in you. Opening up the communication line, if done correctly, maintains trust.