BY BARBARA SWOYER

 Ask any mother of a child with complex medical needs about practicing self care and she’s likely to answer, “what self care?” Understandably, it is all too easy for parents of children with special needs to put their own well being on the back burner. With limitations on our time, resources, and energy, self care can even been seen as simply “one more thing to do.”

Self care does not come instinctively to many parents, especially mothers. It sounds good in theory, and we recognize its importance, but all too often we tend to put ourselves last, behind the needs of our families and in particular the needs of our complex children. However, if we can take small steps to nurture ourselves emotionally and physically, in the long run we will be that much more resilient, happier, and able to care for others, especially the children who depend on us and whose needs are so unrelenting.

There are many ways to practice self-care and there is no one-size-fits-all. The concept of self care means different things to different people. Self care comes in many forms and is unique to each person’s needs. It can be physical, mental, or spiritual. The important thing is to develop an awareness of your needs, and to strive to fulfill them in whatever way is doable, manageable and attainable for you.

A fellow parent described her self care in the following way:

“I think the best thing I did to care for myself was to allow myself to be ‘all in’ and not burden myself with expectations from the outside.  If I had another child I am sure this experience would have been drastically different. Because I only had one to care for, I often spent all day and night on the couch or in bed with him. Along the way, I developed little rituals that I felt were self care. The night before our weekly hospital visit, I would stay up late and watch all the bad TV I had saved up throughout the week. I painted my nails that night every week. It was just a silly little thing I did that became a habit. I gave myself permission to turn everything else off. No dishes or laundry or research. On hospital day I treated myself to a fancy coffee to get through the day. I tried yoga, but it didn’t last long. It was more beneficial for me to sit alone in a coffee shop and write. WRITING was my BIGGEST savior.”

The goal is to find simple and easy ways to incorporate self care into your day to day routine, which don’t require a tremendous amount of effort, but that will, over time, contribute toward your well being and ability to cope. Sometimes it’s the simplest act that gives us renewed energy. Reading, dancing, talking a walk, exercising, meditating, starting a hobby, taking an uninterrupted bath or shower, gardening, napping when your child does, calling a girlfriend, having a good cry, or even just getting showered and dressed for the day are all small, simple activities that can make a big difference.

Until recently, like many others, I had put self care on the back burner. By nature, I am an active and busy person, and I felt like I was managing my role as wife and mother pretty well, despite and inclusive of my complex child, who has been living with serious, chronic disease for almost twenty years. I made small attempts at self care when I could, but often my needs came last, by circumstance, default and admittedly, mostly by my own lack of priority.

My son’s medical needs seem endless, and the stability of his health varies constantly. Like other parents in this situation, I face unpredictable days and am somewhat of a slave to my child’s disease. I like to think that I hold it together pretty well on the outside, but there is no denying that there is an undercurrent of very real, very debilitating, chronic stress that is ever present, and that over time, left unaddressed, is bound to have a negative impact.

Not long ago, I discovered a class that offers a blend of meditation, yoga and healing exercises. The class is small, personal, and meets three times a week for one hour. It’s also pretty out of my comfort zone and I am clearly a novice. I get there when I can, without creating undue pressure on myself, though it has had such a positive effect that I find myself wanting and needing to go. Unexpectedly, this class has been transformative for me. It forces me to slow down, and to rest, reflect and replenish. It quiets my ever-busy mind. I’ve discovered how restorative it is to simply and quietly focus on myself for a change. I return home relaxed and refreshed, feel calmer, am sleeping better, and feel more aware and in charge of my well being. It feels good, for a change. The healing methods I am learning can be practiced anywhere and anytime, which makes them accessible and doable, even and especially when life feels out control and free time is scarce.

Practicing self-care should be something that replenishes you. It should not cause more stress, nor should it feel like something you “have” to do or will judge yourself for not doing if you don’t have the time, interest or energy on any given day. Do it when you can and when and however it feels right for you.

What do YOU do for self-care? We’d love to hear from you. connect@preprodapi.courageousparentsnetwork.org