For most kids, a trip to the emergency room can be terrifying but pretty straightforward. A parent might bring in a crying child and say something like, “He fell off the swing and we heard his arm crack,” or, “She’s had a fever for 18 hours and hasn’t been able to hold down water.” These stories are scary, but they are things that a doctor or nurse will immediately understand.
However, if your child has a serious illness or a history of medical challenges, your story might be a little more complex. Many families with a chronically ill child feel tied to their primary care physician, specialists and hospital facilities just because this team knows their child’s history – how could anyone else possibly understand?
But while a care team may need to know every twist and turn of your child’s story (including copies of any records or diagnostic results!), your child’s teacher probably needs only about half as much information, and the parents of your child’s friend might only need the outline.
When you’re stressed or hurried or unsure, it can be so hard to craft these stories! Instead, find time to shape these stories now. And because you already have enough to keep track of in your mind, consider writing down these three versions of your child’s story – you’d be surprised at how often you will end up emailing or printing written versions anyway. And can you imagine how good it will feel next time you meet a new specialist to be able to hand over a typed version of your child’s medical story, knowing that all the important information is included?
Start with the short version. Consider trying to keep it as short as your child’s condition and his or her limitations – something like, “My child had surgery to correct chiari malformation and shouldn’t do things like heading a soccer ball.” This gives casual acquaintances enough to search for more information if they want, while taking care of any immediate concerns about how to treat your child. If your child has a condition that requires care, this short version of the story can be on the tip of your tongue when you meet new people.
Then for the medium version, think about a concerned friend or teacher. Consider adding details like your child’s history of major procedures, prognosis and upcoming events like a biopsy, scan or surgery. Knowing this can help people be aware when you child might need a little extra TLC.
Then the long version of the story can include absolutely everything, from your child’s early symptoms, to the steps that led to diagnosis, to all interventions (with your opinion of how successful they were!), and a detailed description of any ongoing care.
Writing these things down seems like a lot of work, but think of it like insurance: You’re paying a little bit now for peace of mind later. Having these three versions of your child’s story will allow you to easily give people the information they need, without worrying that you gave too much or too little.