What to Say to Friends with Sick Children


Dr Phil has the story of Kate McRae, a young girl with a pNET tumor in the brain. One of the links answers the question “How do you respond to people with sick children?” Here is a transcript:

Here is the question that so many people have asked me: How do you respond to people with sick children? Do you shy away? What should you say? Well, let me just answer that as best I can. Every situation is different, but I believe in the principle of reciprocity. If you say “tell me how things are going for you?” and they say “oh, we’re doing fine and how about you?” accept that. They’ve defined it at that level. If on the other hand they say, “you know what, some days like today are really, really bad”, then they are inviting you to engage.  To say “you know what, let’s sit down on the bench over here and talk to me for a minute. Tell me how I can help.” You don’t ever want to say “oh, I know how you feel” … cause you don’t. And that can really be offensive to someone that feels like they are really burdened with their situation. So don’t ever say “I know how you feel.” You can listen. You can hear. And say “tell me how you feel. I want to help you. I want to share with you”. Just don’t tell them you know how they feel, unless you really do.

Here are my notes:

I know how you feel: I agree with Phil that it is very patronizing when someone says “I know how you feel”. It is generally followed up with “last week Ginny had the flu and I was scared to death it might be swine flu, so I understand how scary it is”. Let me tell you something. You have NO idea. If the news media scared the hell out of you with what swine flu can do in some rare instances, imagine laying down in bed with your child after chemo and hearing her stop breathing. Then, when she gasps for breath, you are both terrified and relieved. Thinking “my child might have something that can kill her” is scary, but it is scary from a distance. This is scary up close and personal and in your face every night for months. You don’t know how we feel unless you have been here.

How are those Titans?: The other side, avoidance of the question, is not mentioned by Phil, but it is just as bad. We want to feel normal and talk about normal things, but don’t act like the elephant is not in the room. Don’t avoid the question “how is she doing today” because you might be uncomfortable with the answer. When you avoid the question, we parents often get the feeling you see something bad that we missed and it scares the hell out of us. We can see the look on your face and know it scares you, so let’s get that conversation out of the way so we can talk about how good the Titans did this weekend. On this note, the most uncomfortable thing is to watch you staring at the bald headed child and then asking about the weather.

Probing the illness: Converse to the avoidance is probing the question. As a cancer parent, we are most likely going to be nice and answer all the questions, but it gets extremely tiring and emotionally exhausting to go through the entire history of the illness. And it rehashes hard emotions. In our case, we set up a caring bridge site (http://www.caringbridge.org/visit/mirandabeamer) so people could catch up without having to call and play 20 questions. This does not mean you should not ask how things are going and continue to question as things come up. It is just that sometimes we need to talk about it, other times it is just too painful.

Complete Avoidance: The worst thing you can do is completely avoid your friend with a sick child. I know you feel uncomfortable about it, and standing next to the fire of “it could be my child” is painful. It is even more painful when you are in the middle of that fire. As we went through treatment, many people we thought were good friends stopped calling. I would see people in the halls at church getting into conversations with other people when they saw me coming down the hall, so they could avoid the question. The problem was they were not that clever and I could see right through it. One of the most devastating things about terminal illness is you lose many of your “friends” to the illness.

If it sounds like I am angry, I am not. I was once in your shoes talking to a parent with a sick child and I do know how you feel. It is uncomfortable. I just want to relate that we were often devastated by people who were well meaning or scared when we went through Miranda’s treatment, that I want to give advice so you don’t repeat their mistakes.

When you child is sick, you mostly want to feel normal. People who state “they know how you feel” with no real bearings, make you feel more abnormal, especially when the knowing is about their child’s sniffles. People who avoid the child and the illness also make you feel abnormal, as they did not ignore the child prior to the illness. People who continue to probe make you feel abnormal, as you are now the expert on something very few people have gone through. And complete avoidance makes you feel abnormal to the point you feel like a pariah.

It is already stressful enough dealing with a sick child. Making a person feel abnormal just adds to the stress.

Gifts: One more thing, while I am thinking about it. if you want to know what to bring someone, the best two things are a meal and some company. Sitting in the hospital is boring. Hospital food is monotonous. These two things are the most precious after days or weeks in the hospital. The one thing we generally do not need more of is stuffed animals (we received dozens in the first few weeks). If you feel like getting something for our children, activities that can be done in bed are great (coloring books, puzzles (small ones), etc). That is where most of the time is spent and keeping them busy gives us time to talk to other adults. :-)

NOTES:

  • pNET stands for Primitive Neuroectodermal Tumor. It is in the Ewings family of tumors (small blue cell) and often found in the brain, as is Kate McRae’s tumor.
  • Miranda had an Askin’s tumor or Ewing’s Sarcoma in the soft tissue of the chest wall.
  • Miranda is currently 1.5 years out of treatment and just completed her scans today, December 2, 2009.

Peace and Grace,
Greg

Twitter: @gbworld
Miranda’s Site: http://www.caringbridge.org/visit/mirandabeamer

About these ads

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

%d bloggers like this: