Band-Aides and Blackboards is a website created to sensitize people to what it's like to grow up with medical problems. I share in its authorship with children around the world who are doing just that, and who told me their stories. The stories are poignant, varied, and speak of the stigma that so many of them experience. With this data, I've written stories and fantasies, published narratives and poetry, designed strategies of inclusion, shared hints from the children to health care providers, parents and teachers, and interviewed hospitalized kids so that they could, through the web, orient others, and gain some status in the process.

Children with serious medical problems have spoken about a wide range of dilemmas on the website. For some children, the dilemma is the ambivalence of enjoying extra privileges, yet hating the reason that they're offered. For others it's the shame associated with medical diagnoses and a need that grows from that shame to keep hidden what is not directly observable. For many it's the ache to be popular and the belief that popularity is purchased with the coins of conformity. When that conformity forces children to ignore their need for medication and treatment, and when it demands of them a secrecy that consumes energy as it isolates, the price is very high.

The children who shared their lives on this site are those bothered to some degree by the social dimensions of their medical conditions. Many prefer not to talk about, or even think about their differences. Acknowledging them seems to tattoo the reality of the disease, condition, illness, medical problem...you name it, on their identity. What they call it, then, becomes extremely important to them, with certain words having more power to isolate than others. As one child wrote, "I have this condition called diabetes. It's not a disease, because you can't catch it." And from another recalling his early school experiences with muscular dystrophy, "what I have is neither a chronic illness nor a disease. It's just a condition that seemed to affect others more than it did me, though I was teased unmercifully for my differences."

On a page titled "tips for nurses from the band-aide experts", these remarks are a challenge to all of us:

"When I came into the hospital, I was scared, and even though I was nine years old, I still sucked my thumb. Thanks for not embarrassing me about it, and for putting the IV in my other arm!"

"You didn't tell me that you were leaving and that somebody else was going to be my nurse 'til I went to sleep. I wish you would have told me goodbye, and told me about the new nurse."

"When I didn't feel like drinking and everyone was mad at me, you told me that we could have a tea party. Then you poured the juice into two little medicine cups--one for me, and one for you. That was fun, and I was able to drink three of them!"

"I think that you should tell kids what the words mean that you use. Here are some that sure confused me...'n.p.o., stool, ambulate, and catheter'."

"My parents had to go home because of my two little brothers, and I was scared. My room mate had gone home, too. You let me help you instead of making me stay alone in my room. I hope all kids get to have you for their nurse. "

"I needed to get an x-ray, and I was afraid that my Daddy wouldn't find me when he came to visit. You told me that you would put a big sign on my door that he wouldn't miss to tell him where I was. That was great, because he saw it, and he didn't worry about me!"

"If you can't get an IV in my vein in one stick, just forget about it! My Mom said that my arm looks like a pincushion!"

"Well, here's a tip. My nurse took me on a fantasy trip when my back was hurting a lot. We went on a magic carpet ride, and visited wonderful calm places. I had never done that before, and it made me feel so much better. Please take everybody in the hospital on fantasy trips when they're not feeling good!"

"When I had to get stitches taken out, you stayed with me and helped me blow bubbles. What a strange thing to do in a hospital. I think that this is the greatest tip, though. It really helped me!"

The website provides a peek at the incredible resilience of children in the face of serious illness. As such, it reminds us to cherish the children we care for and to better appreciate our lives:

"This kid called me the human bowling ball when I came back to school without hair. I just told her that I sold my hair for a million dollars. I told her that I was going to buy a kangaroo with the money, and of course a zoo to keep it in."