My son had pneumonia. Actual pneumonia with the crackly sounds in his lungs and the hacking cough that made him sound like a little old man and the fevers that wouldn’t go away and the sickly sheen to his skin. When we finally took him to the doctor seven days after off-and-on fevers (cue the mom guilt), I held his gangly body on my lap while the doctor held the stethoscope to his back for a long two minutes. I lived a lifetime in those two minutes.
My son is not unfamiliar with the doctor’s office or any clinical environment. He’s done his time in the NICU, the ER, the ambulances, the PICU, the operating rooms, the recovery rooms, the patient rooms, and the specialists’ offices. They all still give me the heebie-jeebies. My memory is longer and deeper and clearer, like peering all the way to the bottom of a well. One squirt of the wall-mounted hand sanitizer with its particular smell yanks me back to sleepless nights and beeping monitors. That’s okay, I tell myself, because it all had to happen to get us here, in the sunshine on the other side. But in those two minutes in the pediatrician’s office, I felt the security of our current lives slipping down the well. We could be back in the hospital at any moment. Why don’t I always keep a packed bag in the car? Why didn’t I take him to the doctor sooner? Why does he have pneumonia in April?
We left with a prescription for antibiotics and no return appointment. One swing by the pharmacy on the way home and we were back in the sun.
So this is where I find myself, acknowledging the fact that I'm still not over everything that happened. The wounds have not healed over. The memories are still scabby and oozing with fear. They talk about post-traumatic stress disorders mostly in reference to war zones, but if there were ever a domestic war zone, it would be the NICU. Studies have shown that PTSD has been reported in 21 to 23 percent of parents of children who have been in the NICU or PICU and the numbers trend higher in mothers than fathers. People joke about their children’s infancy giving them PTSD, but in parents of children with special needs, it’s no laughing matter.
Despite not always being able to voice my emotions in the middle of the darkness, I go back to my husband when I can and try to give voice to the moment in the re-telling. He knows, via dire warnings from me, that I do not expect him to “fix it.” Find someone that can be your touchstone, someone you can confide in and who will not expect magical healing, but who can support you in the storm or its aftermath.
Sometimes family and friends are not enough. After my son, I had twins who were born prematurely, and was thrown back into the world of oxygen saturations and heart rates and minute-to-minute living. The anxiety was extreme. It was NICU redux. I made an appointment with my general practitioner. We talked. She put me on anti-anxiety medication. I trusted her and it got me through. Seek professional help, whether it be your primary care physician or a psychologist or psychiatrist. It is worth it.
I know what is happening to me when I have these episodes. I can voice the fact that I am re-living and/or reacting to past trauma. Naming it gives you power over it. It also distances you from it enough to get you through, like re-writing the episode in the third person versus the first. Acknowledging the situation for what it is can put your emotions in context and let you glimpse something past the intensity of the moment.
Self-care is hard, especially when you are struggling with the guilt that comes with all you did or did not do. You cannot re-write history. Understanding that can help you begin to let go. Pick a few empowering phrases, statements you can make in those moments to remind yourself that you are: 1) only human 2) a pretty great human 3) the best parent your child could ask for. Something in you is the perfect fit for them. They know it. It’s time for you to know it too.
If you recognize yourself in any of these symptoms, if the smell of hospital hand sanitizer or the sound of your child’s cough can send you back to the worst of it, then name it for what it is – the PTSD of the special needs parent – and begin the steps to heal. You’d do it for your kid. It’s time to take care of you too.
It takes a village!
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