2 PANS kids fighting lyme and coinfections, our journey to healing

They call me warrior.

They Call Me A Warrior Mom

In Facebook groups and chat sessions, parents of children with neuroimmune challenges refer to each other as warriors. After all, we found our way to these groups while fighting for our children’s health, looking for answers to restore their well-being. Each day thousands of parents are exchanging information, collecting recommendations about doctors, finding the latest treatment protocols, discussing the latest studies and deciding where to go and who to see next.

I know this word is meant as a compliment, I know it is said with love. These are words of encouragement used by those of us fighting for our kids. This phrase was coined and adopted and so now we are “warrior moms”. However, in my case, I am a fraud. These mothers are wrong, very wrong about me. Truth be told, I am no warrior. The past 12 years have happened, not because I am a warrior but because I am scared stiff of this being my life forever. I am scared that my children will not make it. I am scared that I will have to live in a powder keg for the entire 18 years my children live with me. I am scared my children will need disability forever. I am scared they will not have productive employment, I am terrified they will not find a functioning relationship and most of all, I am petrified that they will choose to exit life before we have a real chance to treat what ails them. I am tired of the anger and tired of the rages. I am tired of the cursing and the stress, the derogatory statements. I am tired of the doctor appointments. I am tired of nightly bed checks. I am tired of worrying about self-harming and self-abusive behaviors. I am tired of organizing supplement trays and begging my kids to take them. I am tired of keeping journals and tracking behaviors. I am tired of spending summer away from home for treatment. I am exhausted knowing that at our age, we have to rebuild our retirement fund. It is all of THESE things that drive me to keep throwing money, we no longer have, at both useful and useless treatments with expensive alternative doctors.

So there you have it, it’s pure fear that drives me not my undying strength or my warrior disposition. Truth be told, my fight left a long time ago, I truly am exhausted and all I feel these days is a strong urge for flight. My autonomic nervous system was shot, shaken, rattled and rolled a long time ago. I fight, not to treat my kids with the latest cutting edge treatment, I fight because I am terrified this is always going to be my life.

As an aside, I too have Lyme. The debilitating joint pains, migraines, vertigo, insomnia, have plagued me for many years, but now new symptom – a dislocating thumb/wrist thing that keeps me a little bit more shaky than I should be. So, I am just tired. I put my hands up and say – I surrender, take away my membership to the warrior club, my warrior persona is flawed. Don’t call me that, don’t call me something that sounds like I have it together, don’t call me something that makes me sound like I am altruistic. I am the opposite of this. My selfishness drives me not my hidden warrior ego. When people say warrior, I feel flawed. When people think warrior, they think I have it together, I don’t. Blessed be all those nonwarriors out there, I am with YOU my friends because that’s what brings me support.

 

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