Parenting a child who is actively sick or living with a chronic disease is hard. There is no "exact" or "right" way to do everything. You are managing a lot, more than anyone should have to, so try and be kind to yourself.
Here you will find some helpful reminders to get you through some of the toughest moments.
When your child is suffering, it may feel as if all of your care goes to them. But it’s important to give yourself the compassion and love that you would a good friend, too. As you become more mindful, notice what your attitude toward yourself is like. Are you holding yourself up to impossible standards or ignoring your own grief? If so, give yourself permission to treat yourself kindly. Kristen Neff, a self-compassion researcher, explains how self-compassion can benefit you in this interview.
It may feel strange to shift your attention to your own experience, especially if you are used to giving all of your attention to your child. Some caregivers express guilt for paying attention to their own feelings, when they are not the one who is sick. But it’s important to remember that the purpose of mindful parenting is not only to make more space for you to cope with what is happening - it also helps your child by creating a space where you can be truly present with their needs, listening deeply and connecting in a way that makes them feel safe.
Mindful parenting also offers your child a role model for how to react in a healthy way to what is happening - children are very perceptive and can “catch” our fear and stress if we don’t address it.
There may be times when you feel so overwhelmed or agitated with a painful emotion that you are not able to bring kind attention to it. Or you may have your own mental health challenges that make it difficult to practice mindfulness in the way that you would like. That’s okay - mindfulness not be right for you now. There are other ways to take good care of yourself and your child in the moment, such as seeking the support of a good friend or family member, resting, shifting your attention to something that makes you happy, or finding comfort in an old routine, such as going for a walk or giving your dog a belly scratch.
It's okay to miss the past or the future you have imagined. While mindfulness is about staying present with what is happening now, it is normal and healthy to imagine or hope for what might happen next, or to think about losses in the past. The trick is to simply notice how it feels and not get stuck there - and seek help from someone you trust, such as a good friend, a social worker, therapist, or chaplain when you do get stuck.