Secret confessions

Three weeks ago, a dear friend of mine from when I was in my doctoral program had his first baby. Unexpectedly, baby boy – and mom – had some complications and baby ended up in the NICU for two weeks. Fortunately, everything is fine now and both are healthy and strong. So, I breathed a sigh of relief, sent them a care package that included my favorite local coffee beans, a stuffy, and some baby blankets and then didn’t think much more about it. Until I did. I started thinking about my internal experience (or “inner weather” as Tara Brach, my favorite meditation teacher, calls it) during the two weeks when things were a little bit dicey with the baby’s health. I was worried and I sent my friend and his wife love and light on a daily basis. Not one cell of my being was glad or relieved about the complications or difficult experience of the parents. I kept hoping it would be easy, smooth, and uneventful for them. You might this this seems a normal and appropriate response. You might ask, "Why wouldn’t you want an easy and smooth parenting experience for someone you care about, Casey?" This would be a reasonable question. And I will answer with a confession. For years after my PDA son’s birth, whenever a friend would get pregnant, I would feel a pang of hope that they might have a similar experience to me, and that we might connect on that shared experience of babies that didn’t sleep and screamed with their backs arched, faces red the majority of the time. I was waiting to not be alone and isolated anymore in my initial parental experience, to not feel like it was something innately wrong with me or my son. But it never happened. I would watch friends have babies and even the “hard” or “colicky” ones didn’t produce the same sort of experience I lived through. Everyone seemed to be handling bringing another human into the world without missing a beat, and to my utter surprise, sometimes joyfully. I avoided moms groups and conversations about birth and babies when I realized that I was a stark outlier. And then the toddler times hit and I thought, “oh, maybe this is when they will also experience this feeling that I am holding back a tidal wave of my son’s defiant nature,” that they would be able to understand the feeling that sometimes their toddler was *actually* (not figuratively) a demon. That sometimes they didn’t want to be a parent because it was so so so hard.   But again, it was just me. And increasingly, I realized, I was simply alone in my experience. It was only when I began to learn about PDA and my son’s nervous system that I realized that while my experience was indeed the outlier, it wasn’t my fault. That my son had a nervous system disability and that all the things I ascribed to me being a shitty mom and him being “defiant” and not a good kid, actually had nothing to do with that. And when I started meeting other families with PDA children and teens – and doing the work I do now – I realized that I was no longer a population of one. And it was with that sense of clarity and belonging that I began to heal. That I stopped wishing for someone I knew to have the same experience I did with a 4-year-old who would cower in corners, break lamps, and tear things off walls when I came near him. I started to be able to hold space for my experience AND for others’ because I finally felt seen, validated, and not “wrong” as a human. And now, I truly don’t want moms to have hard births, or disassociate after 48 hours of labor and an emergency C-section, or parents to learn what it feels like to have a child that *actually* doesn’t eat or sleep. It’s finally ok for me to know that many people will never fully understand my experience as a parent of a PDA child because there are now many who will. And that is enough. And this feels like peace to me. This is why I am so passionate about supporting parents with PDA children and teens. I believe that we are the catalyst for so much healing and progress with our children, and beyond. And often the transformation is internal and doesn’t lend itself to a “before” or “after” picture. My face looks the same (with more lines and wrinkles) as it did ten years ago, but my inner experience of my life is so much more expansive and regulated. I can actually breath deeper now.