Health looks different for everyone and we want to open the conversation about awareness. What do we know about our health and what do we need to know? Are we asking ourselves and teaching our kids to check in about our current state of being? We can start by asking questions and empowering ourselves to be curious about health.
Kidney disease adds more layers to this health conversation, as some symptoms need discussion with the medical team or may signify kidney-related issues. Many parents receive a kidney disease diagnosis for their child with limited information about these issues or how to best interact with their child’s health condition. As a parent of a kidney kid, you likely have gathered more information than you ever imagined about kidney function, blood content levels, medication uses and side effects and all sorts of other health-related topics. If your child is newly diagnosed, you may be learning a ton of new information about your child’s condition and general health. We won’t get into specifics about chronic kidney disease (CKD) here, but want to invite attention to general health and things we can do in the here and now.
For example, reminding our kids (and ourselves) to regularly notice their bodies and state of being. How am I feeling today? Am I tired, hungry, achy, energized, focused, foggy, lethargic, etc? Have I eaten today, moved my body, dressed myself? What other questions do you use to check your status?
We hope to first bring attention back to general health, as a reminder that we are an integrated complex system and increased health in one area can lead to increased health in other areas, and we know the opposite is also true. Tending to our basic needs can help us understand where we’re at and what we can influence through basic care like nutrition and exercise. We may also think about how CKD is influencing other aspects of our health through deeper questions, depending on where you and your child are at on this health journey.
Children who’ve received a CKD diagnosis may have varying levels of understanding about their own health and how to best care for their condition. Evaluating your child’s level of understanding about their condition and what information may be helpful for them will be unique to each person, but considering involving your child in their health and increasing their awareness can be an important part of growing their independence toward adulthood. Engaging in these conversations throughout your child’s CKD experience will increase their understanding about the importance of their care and attention to their health and may reinforce parent knowledge as well. Talking about health may also help to identify gaps in understanding so that child and parent can seek additional information, as necessary.
You may start this deeper exploration by asking your child what they know about their health and answering questions they may have. A conversation such as this would be a great time to create a list of questions together to take to an upcoming medical appointment. There may be questions your child has that you are unable to confidently answer, and that is okay.
Sometimes health information can be a lot to take in, and it’s okay to be wherever you are in that process. The body is a complex system and kidneys are one important part of how everything functions. We can continue to educate ourselves and support each other through this learning process. We’re here to help. Join our parent mentor and support group to meet other parents who are learning too. We will be happy to listen to your unique questions and direct you to someone who can best provide you with the information you need. Your child can join our support groups, too, to connect with other kids with similar needs. You are not alone. We care about your family’s health!
Take a listen to our Podcast, "Let's Talk About Kidney Kids"