Letter to a New School

Having your child diagnosed with a chronic health condition is a little like being dropped in the middle of a foreign country. There seem to be unknown dangers around every corner. The signposts you normally rely on are nowhere to be seen. Even the language is different. It can be scary and disorienting, and it’s only normal to feel lost and homesick for the way things were. Over time, though, you get to know the new neighborhood. You learn your way around and you know better what to expect. There are can even be some good things about it. It becomes your ‘new normal.’ At the same time, there will be people who care about you who haven’t traveled the same path. What should you tell them? How can you explain what to worry about and what not to? How can they help? These questions came up for us when our daughter’s new kindergarten teacher gently suggested that we send a note to the school’s faculty and parents. Kids were “wondering” why our daughter looked different. Was there anything they could, or should, do? We thought it would be useful to share the letter below. The wonderful thing is that now the school has become part of our extended family and has shared in our travels.

“Dear Kindergarten Parents and School Staff,

We are looking forward to getting to know all of you and to sharing our wonderful daughter Julia with the school. We know we’re biased :), but she is an amazing girl, full of creativity and moxie. Some of you and your kids may have wondered about Julia’s appearance and we thought it best to fill you in. One of the things that makes Julia special is that she has a chronic kidney condition. We’re largely able to keep it in remission through medications, but the steroids she takes have several side effects. They tend to suppress growth, promote weight gain, and redistribute fat to her face, belly and back of the neck. Depending on the dose, these effects vary over the course of the year.

From time to time, Julia has relapses, particularly in the winter during cold and flu season. (We try to ward off viruses by having her use hand sanitizer often and steering clear of those with sniffles and coughs, but there’s only so much one can do…) A relapse lowers the amount of protein in her blood which in turn leads to the accumulation of fluid (“edema”) in her body and requires higher steroid doses. For several weeks, she gets puffy and tends to be less energetic until the higher doses kick in. She goes on a low-salt diet. It isn’t fun, but she’s a trooper and carries on at home and school, pretty much as usual. Pending medical advances, this is a pattern we’ll probably be dealing with for many years.

We would appreciate your help in reinforcing the positive, holistic approach we’ve taken to Julia’s condition. We see it as a part of her overall health rather than a disease to be lamented or pitied. We emphasize to Julia that we all have our ups and downs and need different things to keep our bodies healthy. It’s important for Julia to understand that the medicines she takes help keep her healthy (rather than to see them as the things that make her shorter and chubbier.)

It can be hard to know how to handle these issues at first, especially for kids. If your kids ask, we suggest telling them that “Julia needs to take special medicine to keep her healthy. It helps make her feel better and keeps her strong, but it makes her shaped a little differently.” You might remind them that they get help from doctors and take medicine sometimes, too. Over time, they will see that Julia’s condition is just part of who she is. Please don’t hesitate to call us if you have questions about this. We truly appreciate your understanding and hope that addressing these issues can be a source of insight and connection for your kids, as it has been for us. We know that the school community will be a warm, positive environment for Julia and are looking forward to getting to know all of you!”