Reliving

TW: this will not be a positive post..and that’s okay sometimes.

As I go back over my manuscript to add more important detail and information, I find myself going back to those times: Relentless weeks of a child screaming at me that this is My Fault. The waking during the night in a panic, soaked in sweat and feeling as if I was just transported from my comfortable bed to the middle of a war zone in a snap. The task of protecting my other children from my oldest child, the loneliness of it all.. it was all difficult to say the least. The hardest part of this story, however, is loving and trying to heal someone who tore me down daily. Who constantly drilled into my head that our struggles are My Fault. Who I could sometimes see physically trying not to hurt me when angry, sometimes failing. A child who saved all his negative feelings just for me.

I tried so hard not to believe the words he spat at me daily, but after many years of daily repetition, it still hasn’t left my head. I am still bleeding from these wounds even 3 years later. Taking care of, protecting and advocating for a child who was ultimately by definition also my abuser, took a toll on my self-esteem and brain.

I have not been able to find the path back to the person I was before, someone without sensitivity to noise and fear of crowds and inability to handle the slightest bit of stress without physical repercussions.

This is raw but real – the consequences of a long-term undiagnosed case of PANS. It’s not just the child who loses their childhood, it’s also the family that loses bits of themselves every day as they make themselves smaller to be less likely a target.

So small they forget who they are outside of the carnage.

Once it goes on so long due to misdiagnosis or being complicated to treat, it’s hard to remember that they don’t mean these things. They aren’t choosing the behaviors. They often feel terribly for their actions once they come out of the flare or episode, in our experience. Unfortunately for caregivers, “I’m sorry” starts to lose meaning after hearing it hundreds of times over a week. If you’re lucky enough to get that.

If you’re currently struggling with the flaring child, please keep reminding yourself that this isn’t your child speaking. Treat yourself well, put back in everything they take out of you. Even if it’s small things. Practice lots and lots of positive affirmations and praise for yourself. We have to keep bandaging ourselves DURING the battle, not waiting until the end to sop up the blood and hope for the best. Take it from me.

It’s so much harder when you wait.

🖤🖤