This morning my daughter called me from her hospital bed to go over her plan for surgery tomorrow morning. She is twenty-eight and chronically ill and this is a surgery that she has had before . Even though she is anxious and scared, she has armed herself with knowledge.

It’s been a long journey helping her grow up. Throughout the journey I have empowered her to be her own advocate.

We were both lucky enough to have big mouths, good communications skills, and dogged determination.

If your child is chronically ill, here are some things that you can teach them.

  1. If you have a question, ask it.
  2. If you don’t like the answer, ask another question.
  3. If you don’t understand the answer, ask for more clarification.
  4. If a nurse hands you a pill to take, ask what it is,and what is it for. Ask the side effects of taking it, and of not taking it. If the nurse doesn’t know, ask the doctor.
  5. If your child is in the hospital alone, and they are not able to get a nurse to help them and they are in pain, ask them to call the nurse supervisor to help. If she can’t help and parents are not at the hospital, have them call the administration office and ask for help.
  6. Make friends with the person that brings your food. Extra cookies are valuable when you have nausea.
  7. Some healthcare workers are angels and some are the spawns of the devil. That’s life. Be polite to them all.
  8. If your child is panicked, scared, filled with anxiety teach them tools like meditation, or having their favorite music with them or breathing exercises. They need tools to calm themselves. .

You are not always going to be able to be at the hospital with your child. That’s life. Give them the tools that they will carry with them .If you have any more tools to add, please leave them in the comment box.

Carri Levy is the producer behind Lifetime TV’s “The Balancing Act” and “Behind the Mystery: Rare and Genetic,” as well as a rare disease advocate, speaker, and blogger.

March 30, 2018