Advocating for Your Child

Caring for a seriously ill child can be a difficult and often overwhelming experience. It can be hard to know how best to support your child and make sure their voice is heard. Ultimately, you know your child best and are their best advocate during this difficult time. Here are few things to remember about advocating for your child. 

Be with them. As much as possible, be present with your child. Your presence can provide comfort and ease anxiety. You can also help answer any care management questions and ask for more information as it’s needed. For times when you’re unable to be with your child, rely on your support system of family members, friends, and other trusted adults to spend time with them as well. 

Listen to their wishes. Having conversations with your child about the end of life can be difficult, but it’s important to understand their wishes as much as possible. The Conversation Project recommends asking your child what you can do to make them feel safe and comfortable. You can also ask what they’d like their doctors and nurses to know.

Take notes. When your child receives a diagnosis or as their condition changes, it can sometimes be difficult to understand the medical language being used. Try taking notes during important conversations so that you can remember everything that’s being discussed. This can help you do additional research later or make it easier to ask follow-up questions. 

Ask questions. If there’s something you or your child has a question about, don’t be afraid to talk with your care team. Whether it’s about the course of your child’s illness or the potential side effects of a medication, it’s OK to speak up and get the information you need.

Take care of yourself. You are your child’s best advocate, but you also need to look out for your own needs. Remember to get enough rest, give yourself grace, and make time for self-care. It’s also OK to ask for help and lean on your support network. By taking a few moments for yourself, you can recharge your batteries and continue to support your child during this difficult time.