A couple of weeks ago, Jessi and I were talking as I was firing up the Frankenkindle. She very graciously sits with Tony a few minutes after each session while he watches a video on this near ancient relic so that I can use the bathroom before starting our drive home. Currently Tony is only willing to enter a restroom if he has to use it. I was mentioning the airbrushed appearance of the actress modeling for the anti-wrinkle cream on the opening screen advertisement, and this ignited a commentary about how curated social media can be.
As I was reflecting on this, I realized sometimes there can be a fine line between curation and a curtain. Both control what you allow others to see, but whereas the first one intends to improve the appearance of things, the latter is meant to afford a measure of privacy when needed.
I try to keep things as real as I can, but there are times when I put up a whole bunch of curtains. You may be thinking that everything I write about is more than enough to be going through, and surely it is. But the universe and life certainly haven’t given us a pass on other aversive experiences simply because there is so much going on with our son.
This past year has had healthy portions of difficult happenings just off the blog homepage stage. I remember once, when I was still buying most of our things from Amazon, writing a review for a book on PRT and commenting that I wished to hop on a plane and give the authors a hug for acknowledging some difficult truths that many other authors in the field seemed to ignore in their writings. What I write now seeks to walk the fine line between privacy, the feelings of others, being true to my own emotional needs, and validating the realities of others. Because other moms walking similar paths need to hear that I don’t just bounce unfazed from one therapy strategy to another- some days, I am just trying to keep my head above water.
When I decided to start writing for this blog, part of what motivated me was the frustration I felt as a mom purchasing resources on the market and realizing that much of the content was aimed at helping kiddos with less severe symptoms. We were going into debt in some cases to pay for items and resources to do therapy work with our son, only to find afterwards that some of them didn’t even come close to addressing what we were dealing with, and I felt like it was a gift I wanted to give back to other parents walking a similar path to make what we have been doing available for free for those who needed that. However, as part of that, I have also chosen to not describe everything I am going through at the time it happens so that I can give myself a bit of breathing room to address the matter in a way that is both meaningful and respectful to everyone involved.
In dealing with some of the more challenging behind the scenes themes of the past several months, I needed to up my self-care game as much as possible. And, as you may have noticed if you have been reading with us for a while, I don’t have a lot of wiggle room with spare time to do that in. I believe it is important for me to acknowledge that there have been many days where I have felt far from happy and I wasn’t pushing forward on anything, I was just holding my ground and making sure the essentials got done. That is ok for me, and it is ok for you.
As a parent of special children, we know that on top of all of the other things we are dealing with, we can face many layers of isolation, which can amplify the effects of everything else. The birthday party and play-date invites dry up. For Tony, they actually never even materialized for the most part because things started being noticeably dramatic shortly after his twelfth month. Our neighbors might be unhappy with meltdown noisiness or the yard we’ve neglected to take care of the more important needs of our family. And in general, our new life circumstances frequently become incompatible with that sported by many of the people around us, making get togethers of any kind hard to manage. The cumulative effect of all that can be brutal. And sometimes we decided to add to all of that with choices we feel need to be made for our own personal well-being that can unfortunately further reshape a fragile social circle.
I made such a choice several months ago. Having heard about this, someone I hadn’t seen in a couple of years reached out to me in May to offer support and make sure I was holding up OK. She mentioned how much I had going on, and that it was a pretty difficult time in my life to have taken that stand because of the potential fallout. I honestly didn’t see a better time approaching any time within the next few years, if ever.
I chose what I did and the timing because I believe it to have been the right thing to do, regardless of the short-term difficulties. I knew being true to my beliefs in this way would lead to greater long-term happiness. I am being deliberately vague, because there are many things that can put a person in a similar space, and I want you to be able to see yourself in these circumstances without getting hung up on the details of mine.
I committed to the most respectful handling of that situation as I could, but as they say, “it’s been real,” and I had some distinctly dark moments. Despite that, as Taylor Swift says, “I’d do it over and over and over again” because standing firm for what I believe in matters a great deal to me. And having moved past the emotional whiplash from the harder social parts, I’ve finally been getting to live more fully in that emotional promised land of inner peace that comes when your outer circumstances are more closely aligned with your inner convictions. Holding on to the life-line of incremental expansions to my self-care is what I did to move forward out of the darkness and still hold up the necessary pieces of Hannah and Tony’s worlds I was involved in.
What qualifies as self-care is highly individual and personalized. Most of what I do revolves around creative processes. I don’t drink. Having grown up in a home that was shaped by both drug and alcohol addiction, as a young adult more than 20 years ago I chose the sober life as being the most relaxing for me. So I tend to look towards other things to work through my emotions. Spending just a couple of extra minutes on my eye shadow so that it becomes something less basic and more artistic, playing piano, taking a few minutes each day to teach myself how to play my mother-in-law’s guitar, or spending a tiny bit more time on meditation and prayer are things that help spark my inner sense of healing and joy right now. Learning something new is often most beneficial to me, because it commands my full attention and breaks up rumination far better than tasks I know well enough to allow parts of my mind to wander.
I also have to acknowledge with gratitude that Andy provides support for Tony so that I can go on early morning walks on those days where the temperatures are too high to take our little man on a community safety walk. I really find the sunshine and the movement restorative in a necessary way. And Gena, who has been such a solid and consistent support through all of this, is another person who has made working through the stuff behind the curtains easier.
Our family has needed some of those curtains over the past several months to provide the safest place possible for each person, and undoubtedly I will hang others up over the years as the needs dictate. But I want you to know, those curtains definitely aren’t trying to frame a masterpiece. I will always be very much a work in progress, and even when my posts and therapy strategies are marching on, there are some days where I’d just rather pull the curtains closed and crawl back into bed. Probably thankfully for me, Tony’s circumstances would never let me indulge in doing that.
