When I described our first meeting with J.N. a couple of weeks ago, I kept the cover firmly closed on the subject of my own self-care. This is I think an incredibly important subject when it comes to families of individuals with extensive needs, but experiences can vary widely and there are the rights and feelings of many that need to be acknowledged and respected. Often the burdens felt and shared in a single person’s perspective fail to do justice to the highest motives of others. As I write about our experiences, it is always foremost in my mind that I wish to create understanding rather than wounds.

I don’t ever make the mistake of thinking anyone owes me any kind of assistance. And probably that is for the best, because despite what some well-known authors in the field of special needs have indicated in their writings, when your child has certain challenges it can be extremely difficult to find coverage for a parent to have what most people consider adequate self-care in our country. Over the past nearly seven years, I have had differing challenges to experiencing meaningful self-care. For this week, I’m going to address current events and the types of things I do to help keep the sparkly in my crayon.

Currently, Tony has progressed to the point where a few very special people feel more comfortable providing support to him for me to step away for a couple of hours, but his schedule is so packed with medically necessary therapy hours there aren’t really many opportunities to do that. So, the first place I always start these days is my expectations. If I don’t expect a lot, I can be happy with close to nothing. The next thing is that I always look to what I can do for myself first, because I have found that placing responsibility for my own happiness on another person’s involvement isn’t really fair to anyone. And I always keep a pulse on my situation to assess for when I might need to cut things out, and to carefully consider what I can add in that will create tiny pockets of joy in my daily experiences.

What I noticed heading into the beginning of last month was that I was feeling stretched so thin, Oscar the Grouch was becoming my Spirit Muppet. A lot of times it feels like I’m on an ever speeding treadmill of burning coals that doesn’t have an “off” button. However, sometimes I do get to cool things down a bit by controlling the extra activities I have chosen to pick up and carry along with me. Sometimes I just can’t do it all, y’all, and be the kind of person I want to be both for myself or my loved ones.

With that in mind, I decided to put my own classes on hold until Hannah herself returns to a more traditional schooling environment. Activity cut, sanity and an extra dollop of patience added back into my dealings with others in a single decision. While I have reasons for all of the choices I make, I always try to recognize that some situations are of more immediate importance than others and I choose to prioritize what matters most to our family at any given time.

I am also headed into a period of time where I am going to be once again carrying more of the responsibility for public therapy for a while. Miss Emily has had surgery this past week (and as always has our best wishes for a fabulously easy recovery), and won’t be able to help with that for a few weeks. I am constantly having to put my hair up with a combination of pins and ponytail holders that far too often leave my scalp feeling tortured because of the more active nature of what I do. My hair is thick, and sadly gives new meaning to the phrase “furnace of affliction” during the summer if I wear it down. So, after looking at pictures and getting feedback from my mate about what he would still find attractive on me, I headed into my local Ulta where I was able to cut out headaches, neck roastings, and styling time with a series of well-placed snips. My scalp and I both have been relishing in the freedom. This cut does make me look very different (though the stylist did a great job), and I honestly prefer longer hair for my personal aesthetic, but the added discomfort and stress wasn’t worth it. Hannah was also super supportive about it and assured me I look beautiful…Best. Daughter. Ever.

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Definitely this qualifies as my “overwhelmed mom” cut. I also feel like it drives me to be a bit less casual about wearing makeup to avoid looking more boyish than I prefer (picture one is right after scrubbing my face down for the night). I have so much square in my face (jaw, cheeks, chin…lots of square all the way around) I find that adding a bit of “poof” helps pull this cut off also. However, I do love how short the back is because I don’t have to waste time straightening it to keep from looking like I was electrocuted.

I always take time to add some sort of workout to my day, because it has magical stress canceling powers, though that is mostly a topic for next week. And, I must admit to milking it for everything I can by adding in reading while I hula hoop and use my exercise bike.

Reading has always been part of how I process life’s challenges. Sometimes, although I find some amount of alone time necessary each day, I cannot be left alone with my thoughts because living with them is like being surrounded by the edges of razors when difficult things are happening. My internal monologue is ever opining a constant cacophony of cascading words that is difficult to shush, even in meditation. Hence, it can feel incredibly restorative for me to have the words of another to focus on.

At one point, before I left my parent’s house, I would go to a local library, max out the number of allowable checkouts, read through them with the intensity of a chain-smoker, and return to repeat the process all over again. I don’t have nearly so much spare time these days, but I find that if I make sure and add a bit of reading to answer a curiosity, enhance my understanding, or transport me away from my own problems, I am a much more pleasant person to be around and life just feels dramatically better.

In addition to playing some piano to recoup, I also make time for adding in listening to music that uplifts me. Primarily I fall solidly into the rock camp (Hannah and I were listening to “Thunderstuck” as we pulled into Ulta’s parking lot), however I overall have a pretty eclectic musical palate and right now I’ve been enjoying songs that help improve my Spanish and remind me of the spirituality that is one of the most important sources of joy in my life. I find myself listening over and over again to Lilly Goodman’s “Alma En Libertad,” “Cúbreme,” and “La Feunte Eres Tu.” She has a richness of emotion in her singing that resonates with me and brings plenty of sparkle to my day. I am also a big fan of the more extended version of Romero and Gandara’s “Tu Estas Aqui” found on Alabanzas Hacia El Trono.

Sometimes I feel like that weed that gets gallon after gallon of Round Up dumped on it and just won’t die. What I have found in my current circumstances is that I don’t need a whole lot to be OK and continue growing as a person. As long as what little bits of self-care I do get are highly meaningful to me, that can be enough. The specifics I mentioned evolved from what I find enjoyable…other people may fill in those blanks differently. Sometimes adequate self-care can be a balancing of perspectives, cuts, and modest additions –always with a heavy dose of prioritizing what matters most.