When Trauma Catches Up With You as the Parent of a Child With a Rare Disease

Laying next to my sleeping son, I hear his labored breathing and persistent, barky cough. I check in with my body, because lately, it’s the only way I can measure my anxiety. I notice a sudden thickness in my chest, like a dark cloud of pressure sits directly on my heart. “What if there’s something more to all of this?” I ask myself.

It’s an hour before I have to bring my son in to get a blood draw. It’s something he’s done a hundred times before, but on the other side of it — the side where results lie — awaits a potential answer to a nagging feeling I’m having. The nagging feeling is familiar. It’s what I call a “mother’s intuition.” But it also feels so familiar because it feels so much like anxiety. Which is confusing, because it begs the question: Is this anxiety or should I be pushing harder? As the time ticks down, I notice that my breath is heavy, making it hard to keep up with conversation without feeling like I’ve just run a half marathon. Again, a check-in with my body tells me I’m anxious. I follow that up with gentle curiosity. “Why is this making you so anxious?” I ask myself. And it’s there I find the answer.

I glance at my son, whose eyes look hollow, red, and glossy. His skin is paler than usual, though he always looks a little sickly. He looks so tired. So damn tired. And it makes me want to hold him. It makes me want to rock him in my arms and into a world in which we know; into a world where I don’t have to constantly ask myself, “What am I missing?” It feels like someone is scooping out my insides.

A stranger near me is holding a wide-eyed, beautiful little baby. The baby drinks. The baby coughs. My body responds as if someone pulled down on a fire alarm, the noise pulsing through my chest and alerting me to danger. I force myself to breathe, to not jump up from my chair and sit that child up myself to be sure she isn’t choking. The sounds of coughing so easily arouse memories I pretend do not exist for me. I try to rationalize, count back how many years it’s been since we had to worry about choking, tell myself that part of our journey is over. But it’s futile. My body doesn’t care how long it’s been. It keeps no record. “Get. It. Together,” I say to myself for the tenth time this week.

The world moves on. The active trauma becomes dormant. But it doesn’t go away. The wondering never ceases. It’s something I constantly have to corral. And I am so tired. My body is tired. My mind is tired. My soul is tired. Some days, weeks, and months are easier. But some are so much more difficult. My body tells me the story, and often I don’t want to hear it. I feel fine, but if I only listened, I would know the truth. The truth is that I force myself into the setting of “fine” without decision. I have to work hard — incredibly hard — to give myself permission to even be curious about what’s beneath.

The past month has been one of those hard months — a time where I don’t know what to think, whether to trust my body, whether to prescribe my anxiety as productive or hysterical, whether to trust the nagging feeling that I need to push harder or surrender to the reality that is. For everything that the world sees, there’s this hidden reality that comes with parenting a child with a rare disease that just cannot be explained or equated or justified in any way. Even if you aren’t smack dab in the middle of any active trauma, you’re drowning in the trauma that couldn’t be processed at the time — because you were too busy surviving.

Be gentle with yourself, regardless of whether you’re fighting active demons or old demons. Be gentle with each other because there is so much you do not know. Be curious about your body, because it knows so much more than your mind grants you access to. And allow yourself to be sad, mad, scared, angry, hurt, or anything otherwise because those things are real. They won’t swallow you whole unless you pretend they’re not there. The world will tell you that you need to paint every experience with a broad stroke of positivity, to find the meaning and then the silver lining and to push out the rest. That’s bullshit. Perhaps it’s part of the end game, but you can’t get there without allowing access to it all. Believe me, I’ve tried. There are no shortcuts. The things that feel most like shortcuts are the most toxic to your well-being. Feel it.